How many of us have wanted a reliable, evidence-based guide to aging that explains how our bodies and minds change as we grow older and how to adapt to those differences?

Creating a work of this kind is challenging. For one thing, aging gradually alters people over decades, a long period shaped by individuals’ economic and social circumstances, their behaviors, their neighborhoods, and other factors. Also, while people experience common physiological issues in later life, they don’t follow a well-charted, developmentally predetermined path.

“Predictable changes occur, but not necessarily at the same time or in the same sequence,” said Rosanne Leipzig, vice chair for education at the Brookdale Department of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai in New York. “There’s no more heterogeneous a group than older people.”

I called Leipzig, 72, who works full time teaching medical residents and fellows and seeing patients, after reading her new 400-plus-page, information-packed book, “Honest Aging: An Insider’s Guide to the Second Half of Life.” It’s the most comprehensive examination of what to expect in later life I’ve come across in a dozen years covering aging.

Leipzig told me she had two goals in writing this guide: “to overcome all the negatives that are out there about growing older” and “to help people understand that there are lots of things that you can do to adapt to your new normal as you age and have an enjoyable, engaged, meaningful life.”

Why call it “Honest Aging”? “Because so much of what’s out there is dishonest, claiming to teach people how to age backwards,” Leipzig said. “I think it’s time we say, ‘This is it; this is who we are,’ and admit how lucky we are to have all these years of extra time.”

The doctor was referring to extraordinary gains in life expectancy achieved in the modern era. Because of medical advances, people over age 60 live far longer than people at the dawn of the 20th century. Still, most of us lack a good understanding of what happens to our bodies during this extended period after middle age.

Several months ago, a medical student asked Leipzig whether references to age should be left out of a patient’s written medical history, as references to race have been eliminated. “I told her no; with medicine, age is always relevant,” Leipzig said. “It gives you a sense of where people are in their life, what they’ve lived through, and the disorders they might have, which are different than those in younger people.”

What questions do older adults tend to ask most often? Leipzig rattled off a list: What can I do about this potbelly? How can I improve my sleep? I’m having trouble remembering names; is this dementia? Do I really need that colonoscopy or mammogram? What should I do to get back into shape? Do I really need to stop driving?

Underlying these is a poor understanding of what’s normal in later life and the physical and mental alterations aging brings.

Can the stages of aging be broken down, roughly, by decade? No, said Leipzig, noting that people in their 60s and 70s vary significantly in health and functioning. Typically, predictable changes associated with aging “start to happen much more between the ages of 75 and 85,” she told me. Here are a few of the age-related issues she highlights in her book:

• Older adults often present with different symptoms when they become ill. For instance, a senior having a heart attack may be short of breath or confused, rather than report chest pain. Similarly, an older person with pneumonia may fall or have little appetite instead of having a fever and cough.
• Older adults react differently to medications. Because of changes in body composition and liver, kidney, and gut function, older adults are more sensitive to medications than younger people and often need lower doses. This includes medications that someone may have taken for years. It also applies to alcohol.
• Older adults have reduced energy reserves. With advancing age, hearts become less efficient, lungs transfer less oxygen to the blood, more protein is needed for muscle synthesis, and muscle mass and strength decrease. The result: Older people generate less energy even as they need more energy to perform everyday tasks.
• Hunger and thirst decline. People’s senses of taste and smell diminish, lessening food’s appeal. Loss of appetite becomes more common, and seniors tend to feel full after eating less food. The risk of dehydration increases.
• Cognition slows. Older adults process information more slowly and work harder to learn new information. Multitasking becomes more difficult, and reaction times grow slower. Problems finding words, especially nouns, are typical. Cognitive changes related to medications and illness are more frequent.
• The musculoskeletal system is less flexible. Spines shorten as the discs that separate the vertebrae become harder and more compressed; older adults typically lose 1 to 3 inches in height as this happens. Balance is compromised because of changes in the inner ear, the brain, and the vestibular system (a complex system that regulates balance and a person’s sense of orientation in space). Muscles weaken in the legs, hips and buttocks, and range of motion in joints contracts. Tendons and ligaments aren’t as strong, and falls and fractures are more frequent as bones become more brittle.
• Eyesight and hearing change. Older adults need much more light to read than younger people. It’s harder for them to see the outlines of objects or distinguish between similar colors as color and contrast perception diminishes. With changes to the cornea, lens and fluid within the eye, it takes longer to adjust to sunlight as well as darkness.
• Because of accumulated damage to hair cells in the inner ear, it’s harder to hear, especially at high frequencies. It’s also harder to understand speech that’s rapid and loaded with information or that occurs in noisy environments.
• Sleep becomes fragmented. It takes longer for older adults to fall asleep, and they sleep more lightly, awakening more in the night.

This is by no means a complete list of physiological changes that occur as we grow older. And it leaves out the many ways people can adapt to their new normal, something Leipzig spends a great deal of time discussing.

A partial list of what she suggests, organized roughly by the topics above: Don’t ignore sudden changes in functioning; seek medical attention. At every doctor’s visit, ask why you’re taking medications, whether doses are appropriate, and whether medications can be stopped. Be physically active. Make sure you eat enough protein. Drink liquids even when you aren’t thirsty. Cut down on multitasking and work at your own pace. Do balance and resistance exercises. Have your eyes checked every year. Get hearing aids. Don’t exercise, drink alcohol, or eat a heavy meal within two to three hours of bedtime.

“Never say never,” Leipzig said. “There is almost always something that can be done to improve your situation as you grow older, if you’re willing to do it.”

____

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit kffhealthnews.org/columnists to submit your requests or tips.

___

(KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2023 KFF Health News. Distributed by Tribune Content Agency, LLC.

Why spend the time and expense to get a second opinion if your doctor recommends surgery or they diagnose a serious disease? After all, you’ve been examined, tested and evaluated by an expert with many years of training.

But the harsh reality is that misdiagnosis happens a lot — and sometimes with the gravest consequences. Each year, approximately 371,000 people in the U.S. die because of diagnostic error, according to a July 2023 study in the medical journal BMJ Quality & Safety.

A medical second opinion can increase the chances that you get the correct treatment from the start, saving money, distress and maybe your life.

“Second opinions are probably the single fastest way to address diagnostic errors today,” says Dr. David Newman-Toker, director of Johns Hopkins Medicine’s Center for Diagnostic Excellence.

Seeing the right specialist or subspecialist can make all the difference. “We know [from research] that if a patient with sarcoma is seen at a sarcoma center, their survival is longer,” says Kristen Ganjoo, a medical oncologist who teaches at Stanford University’s School of Medicine.

What is a second opinion, and why is it valuable to you?

Second opinions — whether to review a surgery recommendation or a cancer diagnosis — typically require a step-by-step reexamination of a patient’s case.

The first step is to review the existing diagnosis, according to Ganjoo. For example, patients may need a pathology review at an institution that has experts in sarcomas, she says. “We have a hundred different types of sarcoma, and they’re all treated differently. If a pathologist is not familiar with sarcomas, they may make a mistake in diagnosing patients.”

Next, Ganjoo determines whether the patient needs more tests, such as a scan or an assessment of a tissue sample for genetic mutations.

Finally, she reviews the treatment plan and makes any necessary changes to it, based on all test results and her diagnosis.

But second opinions aren’t only about coming to the correct diagnosis. They can be about “what’s the best possible treatment for this particular patient at this point in their life,” says Caitlin Donovan, a senior director at the nonprofit Patient Advocate Foundation, which works to educate and empower health care consumers.

“How can you incorporate quality-of-life concerns and still get the result you want?” says Donovan. “Physicians may differ on that.”

What does a second opinion cost, and does insurance cover it?

Charges for a second opinion vary widely, as does insurance coverage.

Some major medical centers offer a second opinion service at a fixed price. A virtual second opinion at the Cleveland Clinic costs $1,850. Stanford Medicine charges $700 for an online second opinion. The package of services provided — and the medical staff’s knowledge of particular specialties — vary by institution.

If you are insured by an employer or through a state or federal health insurance marketplace, contact your insurer to ask about your coverage for second opinions for people with your diagnosis.

Medicare may pay at least some of the cost of a second opinion when surgery is recommended. Medicaid offers some coverage of second opinions; call your state’s Medicaid office for details.

You may be able to pay any out-of-pocket costs of a second opinion through your health savings account (HSA) or flexible spending account (FSA).

Financial assistance for second-opinion expenses for certain diagnoses may be available through a variety of organizations, including the Patient Advocate Foundation and the Sarcoma Alliance.

If you are shy about asking for a second opinion

Some patients are embarrassed to let their doctor know that they’d like to get a second opinion. But if you do encounter resistance, know that you’re pursuing a reasonable course of action.

“Any good physician is going to encourage you to explore your treatment options,” says Donovan.

“Sometimes you just have the wrong clinician,” says Newman-Toker. “They’re overconfident or they’re not interested in asking deeper questions or hearing your concerns as a patient. Then, you just need a new doctor.”

Avoiding misdiagnosis

Newman-Toker offers these tips:

• Come to your appointments prepared with a simple, printed summary of your timeline of symptoms and problems, to leave more time for discussion and questions.
• Ask hard questions, such as, “What’s the worst thing that this could be, and why is my condition not that,” says Newman-Toker. If the doctor bristles, consider going to another. “You have to rely on asking probing questions to see if your physician is committed to getting it right.”
• After treatment begins, remain vigilant, Newman-Toker says. “Don’t assume that if you don’t get a good result, your treatment needs to be adjusted, rather than your diagnosis reevaluated. Maybe it’s time for a second opinion.”

The article Getting a Second Opinion Can Help Ward Off Misdiagnosis originally appeared on NerdWallet.

Cardiovascular-related deaths due to extreme heat are expected to nearly triple in the U.S. by mid-century as climate change raises the frequency of very hot days, according to a new study. Older and Black adults are likely to be the most affected.

The study, supported by the National Institutes of Health and published Monday in the journal Circulation, predicts that the number of heat-related cardiovascular deaths in the contiguous U.S. will increase from an annual average of 1,651 recorded in recent years to 4,320 by mid-century (defined as from 2036 to 2065).

Although extreme heat poses a universal threat to health, older and Black adults are expected to be disproportionately impacted because of chronic illness and socio-economic challenges, such as living without air conditioning.

Exposure to high temperatures stresses the cardiovascular system, forcing the heart to work harder. That, in turn, increases the odds of having a heart attack, stroke or other life-threatening episode, especially for people with heart disease.

“The health burdens from extreme heat will continue to grow within the next several decades,” Sameed Khatana, the study’s co-author and an assistant professor of medicine at the University of Pennsylvania, said in a statement. “Due to the unequal impact of extreme heat on different populations, this is also a matter of health equity and could exacerbate health disparities that already exist.”

Khatana and his co-authors made their projection by first evaluating county-level data from the contiguous 48 U.S. states during summer months from 2008 to 2019 to set a baseline. They also examined the connection between extreme heat — days with a heat index of 90F (32.2C) or higher — and cardiovascular mortality. Humidity levels, which can influence body temperatures, were also taken into consideration, as well as projected population changes.

The team modeled how heat would increase using a middle-of-the-road climate emissions projection and calculated how that would affect mortality. The death toll could rise further to 5,491 people if emissions rise sharply, the authors note.

Khatana and his co-authors call for infrastructure upgrades to help communities adapt to a hotter future. Their paper is the latest of a series of warnings from medical professionals about how excessive heat can trigger a variety of health problems and amplify existing inequalities. Last summer, the record-breaking temperatures in Europe caused more than 60,000 premature deaths, according to a study published in July.

_____

©2023 Bloomberg L.P. Visit bloomberg.com. Distributed by Tribune Content Agency, LLC.

The world is entering a new era of vaccines. Following the success of COVID-19 mRNA shots, scientists have a far greater capacity to tailor shots to a virus’s structure, putting a host of new vaccines on the horizon.

The most recent arrivals — as anyone on the airwaves or social media knows — are several new immunizations against respiratory syncytial virus, or RSV.

These shots are welcome since RSV can be dangerous, even deadly, in the very old and very young. But the shots are also expensive — about $300 for those directed at adults, and up to $1,000 for one of the shots, a monoclonal antibody rather than a traditional vaccine, intended for babies. Many older vaccines cost pennies.

So their advent is forcing the United States to face anew questions it has long sidestepped: How much should an immunization that will possibly be given — maybe yearly — to millions of Americans cost to be truly valuable? Also, given the U.S. is one of two countries that permit direct advertising to consumers: How can we ensure the shots get into the arms of people who will truly benefit and not be given, at great expense, to those who will not?

Already, ads on televisions and social media show active retirees playing pickleball or going to art galleries whose lives are “cut short by RSV.” This explains the lines for the shot at my local pharmacy.

But indiscriminate use of expensive shots could strain both public and private insurers’ already tight budgets.

Other developed countries have deliberate strategies for deciding which vulnerable groups need a particular vaccine and how much to pay for it. The U.S. does not, and as specialized vaccines proliferate, public programs and private insurers will need to grapple with how to use and finance shots that can be hugely beneficial for some but will waste precious health dollars if taken by all.

A seasonal viral illness, RSV can cause hospitalization or, in rare cases, death in babies and in people age 75 or older, as well as those with serious underlying medical conditions such as heart disease or cancer. For most people who get RSV, it plays out as a cold; you’ve likely had RSV without knowing it.

But RSV puts about 2% of babies under age 1 in the hospital and kills between 100 and 300 of those under 6 months, because their immune systems are immature and their airways too narrow to tolerate the inflammation. Merely having a bad case of RSV in young childhood increases the risk of long-term asthma.

That’s why Barney Graham, the scientist who spent decades at the government’s National Institutes for Health perfecting the basic science that led to the current shots, said: “The most obvious use is in infants,” not adults.

That’s also why European countries trying to figure out how best to use these vaccines without breaking the bank focused first on babies and determining a sensible price. Though more of the very old may die of RSV, the years of life lost are much greater for the very young. (Babies can get the monoclonal antibody shot or gain protection through a traditional vaccine given to the mother near the end of pregnancy, conferring immunity through the womb.)

A consortium of European experts led by Philippe Beutels, a professor in health economics at the University of Antwerp in Belgium, calculated that the shots would only be “worth it” in terms of the lives saved and hospitalizations averted in infants if the price were under about $80, he said in a phone interview. That’s because almost all babies make it through RSV with supportive care.

The calculation will be used by countries such as Belgium, England, Denmark, Finland, and the Netherlands to negotiate a set price for the two infant shots, followed by decisions on which version should be offered, depending partly on which is more affordable.

They have not yet considered how to distribute the vaccines to adults — considered less pressing — because studies show that RSV rarely causes severe disease in adults who live outside of care settings, such as a nursing home.

Why did the United States and Europe approach the problem from opposite directions?

In the U.S., there was a financial incentive: Roughly 3.7 million babies are born each year, while there are about 75 million Americans age 60 and older — the group for whom the two adult vaccines were approved. And about half of children get their vaccines through the Vaccines for Children program, which negotiates discounted prices.

Also, babies can get vaccinated only by their clinicians. Adults can walk into pharmacies for vaccinations, and pharmacies are only too happy to have the business.

But which older adults truly benefit from the shot? The two manufacturers of the adult vaccines, GSK and Pfizer, conducted their studies presented to the FDA for approval in a population of generally healthy people 60 and older, so that’s the group to whom they may be marketed. And marketed they are, even though the studies didn’t show the shots staved off hospitalization or death in people ages 60 to 75.

That led to what some have called a “narrow” endorsement from the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices for people 60 to 75: Patients in that age range could get the shot after “shared clinical decision-making” with a health provider.

It is likely that because of this fuzzy recommendation, some Americans 60 and over with commercial insurance are finding that their insurers won’t cover it. Under Obamacare, insurers are generally required to cover at no cost vaccines that are recommended by the ACIP; however, if a provider recommends vaccination, then it must be covered by insurance.

(In late September, the ACIP recommended immunization of all babies with either the antibody or the maternal vaccine. Insurers have a year to commence coverage and many have been dragging their feet because of the high price.)

There are better and more equitable ways to steer the shots into the arms of those who need it, rather than simply administering it to those who have the “right” insurance or, swayed by advertising, can pay. For example, insurers, including Medicare, could be required to cover only those ages 60 to 75 who have a prescription from a doctor, indicating shared decision-making has occurred.

Finally, during the pandemic emergency, the federal government purchased all COVID-19 vaccines in bulk at a negotiated price, initially below $20 a shot, and distributed them nationally. If, to protect public health, we want vaccines to get into the arms of all who benefit, that’s a more cohesive strategy than the patchwork one used now.

Vaccines are miraculous, and it’s great news that they now exist to prevent serious illness and death from RSV. But using such novel vaccines wisely — directing them to the people who need them at a price they can afford — will be key. Otherwise, the cost to the health system, and to patients, could undermine this big medical win.

___

(KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2023 KFF Health News. Distributed by Tribune Content Agency, LLC.

The results — whether the men are cured or not after the one-time intravenous infusions this year — have not yet been disclosed by the San Francisco biotech company that created the technology based on Nobel Prize-winning research by UC Berkeley’s Jennifer Doudna.

But the potential treatment, called EBT-101, is safe and caused no major side effects, Excision BioTherapeutics reported at a meeting in Brussels.

Six more men will be treated, perhaps some at UC San Francisco, with higher doses. Participating in the research program is potentially risky: Participants stop their protective anti-HIV drugs for 12 weeks after gene-editing treatment to see if the virus is gone. Data will be presented at a medical conference next year, according to the company.

“We are opening the door for how this new drug will work and what potential it has for people living with HIV,” said Dr. William Kennedy, Excision senior vice president of clinical development. “Ultimately, we see this as a fundamentally new approach.”

The novel strategy could potentially treat other chronic infections where the virus hides latent, such as hepatitis and herpes, he said. It leaves human DNA intact.

“We were super excited about this, and to get the chance to be among the first to do human studies of gene editing for a cure,” said Dr. Priscilla Hsue, professor of medicine and principal investigator for the study’s clinical trial site at UCSF. “If we can permanently remove viral DNA, the thought is, people would get this infusion and then be done.”

EBT-101 is designed to find the specific viral sequences so that it doesn’t cut human DNA. The CRISPR-based therapy uses an empty virus to deliver the “guide RNA” that marks where to cut. An enzyme called Cas9 acts like scissors. The therapeutic solution is given intravenously.

It received the FDA’s “fast track” designation last July after experiments showed success in animals. A single injection safely and efficiently removed SIV, a virus related to HIV, from the genomes of rhesus monkeys. In earlier work, it removed HIV from nine of 23 mice.

But there is a big leap from promising results in mice to success in humans. In addition to UCSF, patients will be recruited at Quest Clinical Research in San Francisco, Washington University in St. Louis and Cooper University in Camden, New Jersey.

In the four decades since the AIDS virus was isolated, treatment has transformed its care. If taken every day, powerful antiretroviral drugs can suppress the virus, controlling illness. Medicine can also prevent infection.

But a cure is needed to end the pandemic. Worldwide, nearly 39 million people are living with HIV. About 77% of them are receiving treatment.

There have only been three known cases of an HIV cure so far. Two were men who received bone marrow transplants from donors who carried a mutation that blocks HIV infection. The third was a woman who received a transplant of umbilical cord blood. But all three treatments were targeting cancer, so this is not a practical option for the average HIV patient.

“The future of so many lives depends on another breakthrough,” said Mark S. King, an Atlanta-based HIV/AIDS activist and author of the book My Fabulous Disease who has lived with the virus for nearly 40 years.

“A lot of people think that this was all rectified when we got successful treatments,” he said. “But the difference between a treatment and a cure, or a vaccine, is profound.”

Excision BioTherapeutics was founded on work in the lab of Kamel Khalili, a professor at Temple University in Philadelphia and director of its Center for NeuroVirology and Gene Editing.

Its research is supported, in part, by the taxpayer-supported California Institute of Regenerative Medicine. The early results of its study were presented at the European Society of Gene and Cell Therapy on Wednesday.

Scientists wondered: Could CRISPR cure HIV by cutting the virus’s DNA? Excision’s approach cuts the virus in two places, removing genes that are essential to replication.

“This is an exceptionally ambitious and important trial,” said Fyodor Urnov, professor of molecular and cell biology at UC-Berkeley and a gene editor at IGI, in an email. “It would be good to know sooner than later” if it works, he said, “including, potentially, no effect.”

Initial research in Khalili’s lab showed that CRISPR could find and destroy the HIV genes in cells.

The results were welcomed with caution by long-term survivors such as King. “Am I intrigued? Yes. Wary? Absolutely. We have been here before, many times. We’ve heard of a lot of promising developments over the years, only to have the rug pulled out from us — because of the vexing nature of how HIV operates in the body.”

The reason that HIV has been so tough to eradicate is that it hides in our cells, said Dr. Jyoti Gupta of the PACE Clinic at Santa Clara Valley Medical Center, which specializes in HIV care.

“The virus is very smart,” she said. “It integrates into the host genome of our immune cells, which are supposed to protect us from infection. It just lies there, hiding.”

“As soon as someone stops the therapy, the latent virus starts replicating again, within days,” said Gupta. “Then there’s virus everywhere.”

Patients in Excision’s trials will be monitored for 15 years, said Kennedy.

Even if it just stops replication for awhile, that’s a benefit, said Gupta. “Less is more. So if a patient can come in for an infusion once a year, for instance, and the virus won’t resurface for a year, that’s reasonable.”

The hope is that Excision’s therapy could become a lifelong cure, freeing patients from daily pill-popping

“Scientists tell me that this is going to be part of a cure some day,” said Berkeley-based AIDS activist Matt Sharp, 68, who has lived with the virus for 38 years. “And I shrug my shoulders and say, ‘Here we go again.’ “

“Now we just have to get the research done,” he said.  “We’ve got to have hope, because the epidemic isn’t over.”

He’s seen the Shrine’s good works. The faith, the women’s clinic, the food pantry, counseling services, and respite offered to CEOs to the downtrodden.

“They do so much for people,” he said of his neighbor. “They have dedicated their life to others.”

He likened them to “first responders” for the soul.

Druker is president of the Druker Company, known for the mixed-use developments throughout the city, from Heritage on the Garden, The Colonnade Hotel and Residencies on Huntington Avenue and Atelier/505 in the South End, bios declare. He also helped found the Downtown Crossing Business Improvement District.

He’s long been quietly behind the city’s arts and cultural life scenes, too, and now he’s the recipient of the Shrine’s Pope Francis Award.

The Pope Francis Award is presented to an individual whose lifework “mirrors the charism and mission of St. Francis of Assisi, lover of the poor and the alienated. It honors one who embodies the Franciscan values of humility, compassion, respect and dignity of all people, and lives out the Gospel,” the Shrine states.

Druker joins the fraternity of Boston’s big-hearted donors who help keep the doors open at the Shrine. It’s a group that gives back for what makes this city unlike any other around.

The gala is Wednesday night at the Museum of Fine Arts in Boston. For those who can’t attend, the Shrine takes donations by phone or online.

The friars at the Shrine work in the shadows of all the skyscrapers.

Br. Paul O’Keeffe runs the counseling center for couples, families or anyone struggling with relationship or mental health issues.

There’s more: the Emmaus Ministry for Grieving Parents, the Father Mychal Judge Recovery Center, Haitian Ministry, Franciscan Spiritual Companionship, the Seniors Program and the Lazarus Ministry — a special service that provides funerals and burial for the homeless and abandoned, “the poorest of the poor.”

It’s an oasis of faith just off Downtown Crossing. Now, Ronald Druker is part of that family. But, he says, he’s always been a charter member.

“St. Anthony’s can turn people’s bad news into better news,” he said. “They work very hard and all are welcome” in this downtown.

Heather Avant always dresses up when she goes to the emergency room.

“I’ve been conditioned to act and behave in a very specific way,” said Avant. “I try to do my hair. I make sure I shower, have nice clothes. Sometimes I put on my University of Michigan shirt.”

It’s a strategy to combat discrimination the 42-year-old photographer in Mesquite, Texas, has developed over a lifetime of managing her sickle cell disease, a rare blood disorder that affects an estimated 100,000 Americans. The hereditary condition can affect a person of any race or ethnicity, but Black patients, like Avant, make up the majority of those afflicted in the U.S.

For people living with the disease, a sickle cell crisis can happen at any time. When it does, their rigid, sickle-shaped red blood cells become stuck in their blood vessels, blocking flow and causing extreme pain or breathing difficulties. A crisis can escalate into life-threatening complications such as strokes, seizures, and sepsis.

When a pain crisis can’t be managed at home, patients head to the ER to get the high dosage of opioids they need, in addition to IVs to help with dehydration or even blood transfusions. Yet staffers in emergency departments — already overextended and grappling with nursing shortages — don’t always have experience in treating the rare disease. Doctors, amid a still-raging opioid crisis, remain resistant to prescribing the painkillers necessary to treat sickle cell crises. So, patients say, they face long delays before receiving essential care, plus discrimination and suspicion that they are seeking drugs to get high.

“I have to look like I’m not coming in here off the street looking for medication,” said Avant. “I have to put on an entire show to get you to believe that I need care.”

Years of research have documented the delays. A study published in 2013 found that patients seeking care from 2003 through 2008 at an ER for their sickle cell crises waited 50% longer than patients who arrived with broken legs or arms. A study published in 2021 found that 50% of sickle cell patients reported having to wait at least two hours before their pain was treated, despite medical guidelines recommending such patients in crisis receive their first dose of pain medication no more than 60 minutes after arriving at the ER.

Medical associations such as the American Society of Hematology, the National Heart, Lung, and Blood Institute, and the Emergency Nurses Association have established guidelines for emergency department-based care of sickle cell pain. And, in 2021, the Emergency Department Sickle Cell Care Coalition, a national collaboration of hematologists, pharmacists, and nurses, helped launch a point-of-care tool to help medical professionals manage the disease in the ER.

But patients and sickle cell experts said those best practices haven’t been widely adopted. A 2020 survey of nearly 250 emergency medicine providers found that 75% of them were unaware of the NHLBI’s recommendations, first published in 2014, yet 98% felt confident in their ability to treat patients with sickle cell disease.

Still, ER horror stories abound among adults with sickle cell disease. For Lesly Chavez, 29, a Houston hairstylist, her worst experience occurred a few years ago. She said she spent four hours in a waiting room before getting seen.

“And when they finally got to me, they told me they could help with ‘my addiction,’ but they decided that there was nothing that they could do for me,” Chavez said. “They just flat-out said no and sent me home while I was in crisis.”

Chavez said she has since avoided that hospital even though it’s 10 minutes from her home. Now she drives to an ER 30 minutes away.

Chavez, who is Hispanic, said she confronts “doubt everywhere I go” because sickle cell disease primarily affects Black Americans. (Those who are Hispanic can be of any race.)

Paula Tanabe, a professor of nursing at Duke University who has spent decades researching ways to improve care for sickle cell patients, said a confluence of factors adds to the racial bias patients may face.

“Emergency rooms are incredibly overcrowded, at rates that we have never seen before, and that’s for everyone,” said Tanabe.

Legislators are trying to help. A federal bill introduced in June would allocate $8.2 million annually for five years to a program that trains doctors on best practices for caring for sickle cell patients. Another, introduced this spring, would provide funding for community organizations working to spread awareness about the condition and give student loan relief to medical providers who commit to working on the disease. Some state legislatures have established sickle cell task forces to improve physician education and care coordination.

Advocates for sickle cell patients said investment in data collection to track the disease is also important. Although the Centers for Disease Control and Prevention estimates that some 100,000 Americans have it, the true number is unknown. That’s because no national system exists to collect data on sickle cell, unlike other conditions such as diabetes, cancer, and Alzheimer’s.

“I’m 32 and we’ve been saying it’s 100,000 my entire life,” said Quannecia McCruse, who co-founded the Sickle Cell Association of Houston. “I know there’s more. I know people are going uncounted.”

Eleven state-led data collection programs currently exist and, in February, the CDC opened a new grant application for additional states. Improved data would allow funding to be allocated toward the areas with the greatest need, sickle cell patient advocates said.

Texas had an opportunity to join those efforts. This spring, the state legislature passed a bill with broad bipartisan support to create a sickle cell patient registry, but Republican Gov. Greg Abbott vetoed it, saying it would compromise patient privacy.

“That was a bad excuse,” said McCruse. “We have a cancer registry already, and everyone’s information is safe. That registry would have gone a long way to help.”

While progress grinds slowly, patients like McCruse say they’re forced to balance advocating for themselves during bouts of excruciating pain against the need not to irritate or alienate hospital staffers.

“It feels like someone is taking a Taser and shocking the crap out of me. Or when it’s really bad, and it feels like shards of glass are just moving through my veins,” said the mother of two. “It’s very, very painful. And you’re telling somebody whose body is torturing them that it’s not that bad?”

Alexis Thompson, a hematologist who treats sickle cell patients at the Children’s Hospital of Philadelphia, said she works with her pediatric patients to develop self-advocacy skills. But sometimes that backfires.

“The great irony is patients who are well informed and capable of self-advocating are being accused of being manipulative, because they are capable of articulating very clearly what’s effective for them down to the name of the medication or the absolute dose,” Thompson said.

Sickle cell experts recommend that doctors adhere to a patient’s individual pain plan, if available. Thompson said those plans, which document patients’ diagnoses alongside a recommended medication and dosage, can be uploaded to online portals that patients can pull up on their cellphones when visiting an ER to verify what they need.

Patients such as Avant hope such steps can help decrease their ER waits while easing their anxiety about seeking emergency care.

“I don’t fear dying,” said Avant, “but I do fear dying in the hospital.”

___

(KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2023 KFF Health News. Distributed by Tribune Content Agency, LLC.

If you or someone you know may be experiencing a mental health crisis, contact the 988 Suicide & Crisis Lifeline by dialing “988,” or the Crisis Text Line by texting “HOME” to 741741.

HELENA, Mont. — Mike Hossfeld unlocked a heavy black steel door to his home’s gun safe, unveiling both modern and antique firearms, some dating from the early 1900s.

“Most of this is mine. There are a few weapons in here that belong to other folks,” he said.

Hossfeld regularly stores firearms for others who are going through a mental health crisis or a rough period. That puts time and space between them and their guns, which can significantly reduce suicide risk.

Hossfeld first stored a firearm, for his National Guard commander, in the 1980s, after the commander talked about suicide.

“We carried our sidearms in a shoulder holster. So I just walked over and took the strap off and said I was going to store his weapon for him in my toolbox,” Hossfeld recalled.

His commander recovered and was very happy to get his weapon back, Hossfeld said. And that’s the whole premise, Hossfeld said, of a Montana law passed earlier this year: to make it easier to help a friend get through a mental health crisis and alleviate the immediate risk of suicide until they get better.

The law protects people who store firearms for others from legal liability if someone self-harms after picking up their gun.

Public health officials hope that will encourage more people like Hossfeld to store firearms for family and friends. They also want to encourage gun shops and shooting ranges to offer storage for the public.

Montana public health officials are creating a map of locations that store firearms, similar to other states’ so-called safe storage maps.

Montana has the second-highest suicide rate across the country, after Wyoming, according to the Centers for Disease Control and Prevention. About 85% of Montana’s gun deaths are suicides, according to state data. That’s much higher than the national average of 60%.

Tough conversations

At a local gun show this spring, Lewis and Clark County Suicide Prevention Coordinator Jess Hegstrom set up a booth amid a sea of camo and pro-gun T-shirts.

“I have, like, little guns on my earrings. I’m cool, I’m friendly. I’m not here to waggle my finger at you,” she said.

Instead, Hegstrom talks to people about how to bring up a tough topic like suicide, and safe storage of firearms for anyone at risk, with friends and family.

Sometimes her message is well received, but in other cases people shy away, which Hegstrom said is a sign there’s still a lot of work to do to normalize conversations about firearms and suicide.

Hegstrom is working on a local “safe storage map” identifying gun shops and other locations willing to store guns for the public. She hopes it will become a statewide resource and a tool for suicide hotline operators.

Colorado, Washington, Louisiana and other states have implemented some version of a safe firearm storage map or public messaging campaign encouraging people to store firearms outside the home while at increased risk for suicide.

Legal barriers

Background check requirements and variation in state and federal gun laws give some gun shop owners pause when it comes to storing firearms for at-risk people or having their stores on a public safe storage map.

“I’m not really sure that firearms dealers doing hold agreements is really the best idea,” said Ed Beal, owner of Capital Sports in Helena.

Hegstrom asked Beal to participate in the safe storage map for Lewis and Clark County, but Beal said he has a lot of questions about what is legally required under federal law when it comes to storing firearms temporarily, particularly about what background checks his shop would have to do to return a person’s gun to them after they participate in the safe storage program.

Some gun shop owners participating in safe storage programs in other states say federal background check laws can also deter people from using the storage program in the first place.

Hammer Down Firearms, a gun shop outside Denver, is on the safe storage map for Colorado.

The idea of storing guns for the public is fine in theory, said co-owner Chris Jandro. However, he said, only two people have used the shop’s service.

Many customers back out once they hear that they’ll need to pass a background check when they come back to get their gun, Jandro said.

That background check includes questions about mental health treatment.

Having gotten treatment doesn’t necessarily disqualify someone from getting a gun back, but the questions can be confusing, especially for someone in crisis.

NPR and KFF Health News requested an interview with the Bureau of Alcohol, Tobacco, Firearms and Explosives, which regulates gun shops, but did not receive a response.

Federal law doesn’t prohibit a person from storing guns for another person.

But in some places, like New York and Massachusetts, state laws can make doing so legally almost impossible, according to Harvard public health researcher Cathy Barber.

“In New York state, you might be a licensed gun owner, but you’re still not supposed to hold on to somebody’s guns, because you’re supposed to register each individual gun,” she explained.

The only workaround is to formally transfer ownership of a weapon at a gun shop. Ownership would have to be transferred again before the gun could be returned, Barber said.

In New York, that includes filing paperwork with the state for each gun.

Other states allow immediate family members to hold on to a relative’s guns without transfer paperwork, but they prohibit extended family members or friends from doing so.

These legal hurdles just take too long to navigate during a crisis, said emergency room physician and University of Colorado professor Emmy Betz, who helped set up Colorado’s safe storage map.

Betz suggested that gun transfer and background check laws include exceptions for suicide prevention. “It would make it easier to give your gun to your cousin, for example,” she said.

That’s what lawmakers did in Washington state. A recent law change now allows friends and extended family members, rather than just immediate family, to store a gun — if suicide is a risk.

Support from public health officials and gun enthusiasts

It will take time to address the legal barriers and patchwork regulatory landscape, but that shouldn’t deter health officials in the face of a growing crisis, said Betz. The number of suicides involving firearms pushed the national suicide rate to an all-time high in 2022, according to a KFF analysis of preliminary mortality data.

Betz said there is still a place for red flag or extreme risk laws that allow courts to legally seize firearms from someone who poses a risk to themselves or others.

But that should be a last resort, she said.

Gun rights advocates are coming around to the idea of voluntary safe storage. Jason Swant was chairman of the board of Prickly Pear Sportsmen’s Association for 13 years. The association operates a shooting range in Helena.

Swant said he overcame his initial reluctance and started working with Lewis and Clark County health officials after hearing the stories of people who loaned their guns or held someone else’s guns to avert a crisis. “That made a difference,” he said.

There isn’t a lot of data on how often people use public safe storage options or ask friends or family to hold on to their guns to reduce suicide risk.

According to a survey of Colorado and Washington state gun owners, a little over a quarter of respondents had stored a firearm away from home in the last five years. However, they could have been storing guns for reasons beyond suicide risk, like during a long vacation or visit from grandchildren.

Researchers in Colorado are planning a study to gather more information on how often people store guns outside their homes to prevent suicide.

Making it normal to ask for help

It’s going to take repeated and widespread messaging campaigns to truly change people’s behavior, said Barber, the Harvard researcher.

“You need the kind of message saturation that we’ve got with designated drivers and ‘friends don’t let friends drive drunk,’ where you’re seeing it in TV shows, on movies, you’re seeing it in PSAs,” she said.

Some gun enthusiasts want to help.

Peter Wakem, a North Carolina-based custom gun case designer, said he has periodically gone into crisis over the years. When that happens, his friends take his firearms and change the code for the safe at his shop.

He started talking about his experiences on various gun-oriented podcasts to promote the idea of safe storage. He has a list of people to call “when things start going dark.” He also keeps a note to himself in his gun safe in case he needs to be pulled back from the brink.

“Time to reach out, things will get better, you’re not weak. You’re doing the right thing. Make the phone call. Signed, Future Pete,” the note reads.

____

This article is from a partnership that includes MTPR , NPR and KFF Health News.

___

(KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2023 KFF Health News. Distributed by Tribune Content Agency, LLC.

For the first time, people worried about their risk of Alzheimer’s disease can go online, order a blood test, and receive results in the privacy of their homes.

This might seem appealing on the surface, but the development has Alzheimer’s researchers and clinicians up in arms.

The Quest Diagnostics blood test, AD-Detect, measures elevated levels of amyloid-beta proteins, a signature characteristic of Alzheimer’s. Introduced in late July, the test is targeted primarily at people 50 and older who suspect their memory and thinking might be impaired and people with a family history of Alzheimer’s or genetic risks for the condition.

Given Alzheimer’s is among the most feared of all medical conditions, along with cancer, this could be a sizable market indeed. Nearly 7 million older adults in the U.S. have Alzheimer’s, and that number is expected to double by 2060 if medical breakthroughs don’t occur.

But Alzheimer’s researchers and clinicians aren’t convinced the Quest test is backed by sound scientific research. The possibility of false-positive results is high, as is the likelihood that older adults won’t understand the significance of their results, they say. The test should be taken only under a physician’s supervision, if at all, they advise. And, priced originally at $399 (recently discounted to $299) and not covered by insurance, it isn’t cheap.

Though blood tests for Alzheimer’s are likely to become common in the years ahead, the Alzheimer’s Association said it’s premature to offer a test of this kind directly to consumers.

For its part, Quest, which also sells direct-to-consumer tests for sexually transmitted diseases and various other conditions, suggests older adults can be trusted to respond responsibly to AD-Detect results. The test is not meant to diagnose Alzheimer’s, the company stressed; instead, it’s meant to help assess an individual’s risk of developing the condition. But under a new proposed biological definition of Alzheimer’s, excess amyloid could automatically trigger a diagnosis of “preclinical” Alzheimer’s.

Michael Racke, Quest’s medical director of neurology, said individuals who test positive might be inspired to talk to their physicians about cognitive symptoms and seek comprehensive evaluations from dementia specialists. Others may just want to adopt behaviors associated with brain health, such as exercising more and maintaining healthy blood pressure, blood sugar and cholesterol levels.

“People who do consumer-initiated testing are often very motivated to figure out what they can do to help reduce the risk of disease,” he said.

To get the test, a person first needs to go to the AD-Detect test’s website and report that they’re experiencing mild cognitive decline and have at least one other risk factor. (Self-reported complaints of this kind are often unreliable, experts note.) The order then goes automatically to a doctor paid by Quest, who will order a blood test to be drawn at a Quest laboratory.

Results classifying a person as low, medium or high risk will be provided on a secure patient portal. Post-test counseling isn’t mandatory, but individuals can speak to a physician paid by Quest, if they like. (There is a separate $13 “physician service fee.”)

A new poll from the University of Michigan confirms that older adults will take results seriously: 97% of seniors said they would take steps to improve brain health upon receiving a positive result from a blood test, while 77% said they would consider changes to financial or end-of-life plans.

But research scientists and clinicians worry that Quest hasn’t published any peer-reviewed studies documenting the test’s validity. The company’s preliminary data released at the 2022 Alzheimer’s Association International Conference in San Diego suggests there’s a relatively high chance of false-positive results, said Suzanne Schindler, an associate professor of neurology at Washington University School of Medicine in St. Louis.

That’s a significant problem because telling someone they have biological changes associated with Alzheimer’s disease is a “big deal and you want to be as accurate as possible,” Schindler noted.

Racke said at least three scientific studies giving more details about the AD-Detect test have been submitted to medical journals and might be published by the end of this year.

Experts also question the usefulness of the test since a positive result (indicating abnormal levels of amyloid in the blood) doesn’t mean an individual will definitely develop Alzheimer’s disease. Amyloid in the brain accumulates slowly over the course of decades, typically beginning in middle age, and becomes more common as people age.

“This test gives you a fuzzy answer. We don’t know whether you’re going to get dementia, or when symptoms might begin or, really, how high the risk is for any individual,” said Meera Sheffrin, medical director of the Senior Care clinic at Stanford Healthcare.

Also, cognitive symptoms that prompt someone to take the test might be due to a wide variety of other causes, including mini-strokes, sleep apnea, thyroid problems, vitamin B12 deficiency, or medication interactions. If an older adult becomes anxious, depressed or hopeless upon learning they’re at risk for Alzheimer’s — another source of concern — “they may not go for further evaluation and seek appropriate care,” said Rebecca Edelmayer, senior director of scientific engagement at the Alzheimer’s Association.

The University of Michigan poll confirms the potential for misunderstanding. Upon receiving a positive result from a blood test, 74% of seniors said they would believe they were likely to develop Alzheimer’s and 64% said they would be likely to experience significant distress.

Because the science behind blood tests for Alzheimer’s is still developing and because “patients may not really understand the uncertainty of test results,” Edelmayer said, the Alzheimer’s Association “does not endorse the use of the AD-Detect test by consumers.”

Quest’s blood test is one of several developments altering the landscape of Alzheimer’s care in the United States. In early July, the FDA granted full approval to Leqembi, an anti-amyloid therapy that slightly slows cognitive decline in people with mild cognitive impairment and early-stage Alzheimer’s. Early detection of cognitive symptoms and diagnosis of cognitive dysfunction have assumed greater importance now that this disease-modifying drug is available.

Also in July, a work group convened by the National Institute on Aging and the Alzheimer’s Association proposed a new definition of Alzheimer’s disease to be used in clinical practice.

Previously, Alzheimer’s could be diagnosed only when there was evidence of underlying brain pathology (amyloid plaques and tau tangles) as well as cognitive symptoms (memory loss, poor judgment, disorientation, among others) and accompanying impairments (difficulty with managing finances, wandering, problems with self-care and more). Under the new definition, Alzheimer’s would be defined purely on a biological basis, as a “continuum that is first evident with the appearance of brain pathologic changes” including amyloid accumulation, according to a draft of the work group’s report.

That would mean “you can get a positive result from the Quest test and be diagnosed with Alzheimer’s disease if these guidelines are adopted, even if you’re cognitively normal,” cautioned Eric Widera, a professor of medicine at the University of California-San Francisco.

Demand for follow-up evaluations by dementia specialists is likely to be high and contribute to already-long waits for care, he suggested.

Additional concerns about the test relate to safeguarding privacy and the potential for discrimination. No federal laws protect people who receive Alzheimer’s biomarker results from discriminatory practices, such as employment discrimination or the denial of life, disability or long-term care insurance. (The Genetic Information Nondiscrimination Act applies only to genetic tests.) And “laws that normally protect the privacy of health information do not apply in this space,” said Emily Largent, an assistant professor of medical ethics and health policy at the University of Pennsylvania’s Perelman School of Medicine.

Notably, HIPAA, the Health Insurance Portability and Accountability Act, doesn’t extend to laboratory tests marketed directly to consumers.

The bottom line: Before taking a test, “older adults need to ask themselves, ‘Why do I want to know this? What will I do with the information? How will I react? What would I change in the future?’” said C. Munro Cullum, a neuropsychologist and distinguished professor of clinical psychology at the University of Texas Southwestern Medical Center. “This test needs to be used very cautiously and with great forethought.”

____

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit kffhealthnews.org/columnists to submit your requests or tips.

___

(KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2023 KFF Health News. Distributed by Tribune Content Agency, LLC.

My old dog, 14, is nearing the end of his life. Less than a week ago, I sensed something was wrong and took him to a veterinary hospital where blood tests showed that his kidney values were getting very bad. My dog had values of BUN 92, Creat 5.6, and Phosphorous of 7.7. They admitted my dog and gave him fluids and anti-nausea medication. The next day the bloodwork was repeated, and the same values were 111, 7.3, and 9.5 respectively. I was told my dog had a poor prognosis and that I could take him home for hospice and to give him fluids and more medication for nausea. I brought my dog home to be comfortable.

Yesterday, my own vet repeated the bloodwork, and the same values were 158, 7.2, and 9.6. In July, the values were 29, 1.4, and 3.6. What should I do? My dog is eating a low protein diet and doesn’t seem to act that weak or abnormal. Is kidney failure reversible? S.B.

Dear S.B.,

The typical treatment regimen for all forms of renal failure is infusing the patient with fluids to flush the kidneys, low protein diets to help lower the workload of the kidneys, and various supplements to improve kidney function if applicable. What you should do is exactly what you are doing in giving fluids presumably subcutaneously, anti-nausea medication, and a low protein diet. Keep him happy and comfortable. Normal BUN is 6-30, Creat 0.5-1.5, and Phosphorous 2.5-5.6.

Renal failure can be reversible depending on the cause, age of the dog, how long it has persisted, and many other factors. In his case, it appears quite clear that the key indicator values are going in the wrong direction day by day and that things are only getting worse.

No veterinarian, myself included, can give you a timeline but I suspect that, given the values, your dog’s lifetime is very limited. Clearly you have done all that you can for him so enjoy this time together. You will know when his time is up as he will likely become weak and lethargic, seem uncoordinated or disoriented, lose his appetite, have pale gums, and fail to thrive. Good luck at this difficult time.

Dr. John de Jong owns and operates the Boston Mobile Veterinary Clinic. He can be reached at 781-899-9994.

LAS VEGAS — When Andria Peterson began working as a clinical pharmacist in the pediatric and neonatal intensive care units at St. Rose Dominican Hospital in Henderson, Nevada, in 2009, she witnessed the devastating effects the opioid crisis had on the hospital’s youngest patients.

She recalled vividly one baby who stayed in the NICU for 90 days with neonatal abstinence syndrome, a form of withdrawal, because his mother had used substances while pregnant.

The mother came in every day, Peterson said. She took three buses to get to the hospital to see her baby. Peterson watched her sing to him some days and read to him on others.

“I saw in the NICU the love that she had for that baby,” Peterson said. “When it came down to it, she lost custody.”

At the time, Peterson said, she felt more could be done to help people like that mother. That’s why, in 2018, she founded Empowered, a program that provides services for pregnant and postpartum women who have a history of opioid or stimulant use or are currently using drugs.

The program helps about 100 women at any given time, Peterson said. Pregnancy often motivates people to seek treatment for substance use, she said. Yet significant barriers stand in the way of those who want care, even as national rates of fatal drug overdoses during and shortly after pregnancy continue to rise. In addition to the risk of overdose, substance use during pregnancy can result in premature birth, low birth weight and sudden infant death syndrome.

A federal initiative seeking to combat those overdoses is distributing millions of dollars to states to help fund and expand programs like Empowered. Six states will receive grant funding from the Substance Abuse and Mental Health Services Administration to increase access to treatment during and after pregnancy. The Nevada Health and Human Services Department is distributing the state’s portion of that funding, about $900,000 annually for up to three years, to help the Empowered program expand into northern Nevada, including by establishing an office in Reno and sending mobile staff into nearby rural communities.

Other states are trying to spread the federal funds to maximize reach. State officials in Montana have awarded their state’s latest $900,000 grant to a handful of organizations since first receiving a pool of funding in 2020. Connecticut, Iowa, Maryland, and South Carolina will also receive $900,000 each.

Officials hope the financial boosts will help tamp down the rise in overdoses.

Deaths from drug overdoses hit record highs in 2021, according to the Centers for Disease Control and Prevention. More recent preliminary data shows that the rates of fatal drug overdoses have continued to rise since.

Deaths in pregnant and postpartum people have also increased. Homicides, suicides and drug overdoses are the leading causes of pregnancy-related death.

Fatal overdoses among pregnant and postpartum people increased by approximately 81% from 2017 to 2020, according to a 2022 study. Of 7,642 reported deaths related to pregnancy during those years, 1,249 were overdoses. Rates of pregnancy-related opioid overdose deaths had already more than doubled from 2007 to 2016.

Meanwhile, mothers and mothers-to-be in rural parts of the country, some of the hardest hit by the opioid crisis, face greater barriers to care because of fewer treatment facilities specializing in pregnant and postpartum people in their communities and fewer providers who can prescribe buprenorphine, a medication used to treat opioid addiction.

Data distinguishing the rates of overdose mortality among pregnant and postpartum people in urban and rural areas is hard to come by, but studies have found higher rates of neonatal opioid withdrawal syndrome in rural parts of the country. Women in rural areas also died at higher rates from drug overdoses in 2020 compared with women in urban areas, while the overall rate and the rate among men were greater in urban areas.

In Nevada, a 2022 maternal mortality and severe maternal morbidity report found that most of the state’s pregnancy-related deaths, 78%, happened in Clark County, home to Las Vegas and two-thirds of the state’s population. However, the state’s rural counties had the highest pregnancy-related death rate — 179.5 per 100,000 live births — while Clark County’s was 123 per 100,000 live births.

During a recent event hosted by Empowered, four mothers recounted their struggles with addiction while pregnant. “It was never my intention to actually have a drug addiction,” said a mother named Amani. “I’ve always wanted to get out of the cycle of relapsing and drug usage.”

Amani, who asked to be identified only by her first name for fear of stigma associated with using drugs while pregnant or after giving birth, said she found the support she needed to treat her addiction in 2021. That’s when she began seeking help at Empowered.

Substance use while pregnant or postpartum is “incredibly stigmatizing,” said Emilie Bruzelius, a postdoctoral fellow in the Department of Epidemiology at Columbia University’s Mailman School of Public Health and author of a study of trends in drug overdose mortality during and after pregnancy. The stigma and fear of interacting with child welfare or law enforcement agencies prevents people from seeking help, she said.

A Rand Corporation study found that states with punitive policies toward mothers with substance use disorders have more cases of neonatal abstinence syndrome. Nevada was among them.

Researchers have found that, in addition to facing fear of punishment, many women don’t have access to treatment during and after pregnancy because few outpatient centers specialize in treating mothers.

Both Nevada and Montana had fewer than one treatment facility with specialized programs for pregnant and postpartum women per 1,000 reproductive-age women with substance use disorders, with Montana ranking in the lowest quintile.

One Health, a community health center covering Montana’s sprawling southeastern plains, is using the newly awarded federal money to train peer support specialists as doulas, professionals specialized in childbirth who can provide support throughout pregnancy and after.

Megkian Doyle, who directs the center’s community-based work, said in one case a survivor of sex trafficking who was drugged by her abusers worked with a recovery doula to prepare for the potential triggers of being exposed to medical workers or needing an IV. In another, a mom in stable recovery from addiction was able to keep her baby when hospital staffers called child protective services because she already had a safety plan with her doula and the agency.

After birth, recovery doulas visit families daily for two weeks, “the window when overdose, relapse, and suicide is happening,” Doyle said. The workers, in their peer support role, can continue helping clients for years.

While doula care, rarely covered by insurance, is unaffordable for many, Medicaid typically covers peer support care. As of late September, 37 states and Washington, D.C., had extended Medicaid benefits to cover care for 12 months postpartum. Montana and Nevada have approved plans to do so. Health centers in similarly rural states have taken note. The program’s latest cohort of recovery doulas includes five peer support specialists from Utah.

With its trauma-informed approach, the Nevada-based Empowered program takes a different tack.

The program focuses on meeting its participants’ most pressing need, which varies depending on the person. Some people need help getting government-issued identification so they can access other social services, including aid from food pantries, said Peterson, the founder and executive director. Others may need safe housing above all.

Empowered is not abstinence-based, meaning its participants do not lose access to services if they relapse or use substances while seeking help. Because some participants may be actively using drugs, the Empowered office is also a distribution site for the overdose reversal medication naloxone and test strips that detect fentanyl, a powerful synthetic opioid that has contributed to jumps in fatal overdose rates in recent years. The program’s staff also provide education about the effects drugs have on an unborn baby during pregnancy.

Being able to be honest with Empowered staff made a difference for Amani.

“I can’t tell you how many times I’ve tripped and fallen but tried to get back up and fallen again,” she said.

The goal is not only to stabilize participants’ lives but to make them resilient — whatever that may look like for each individual. For many, that includes having stable housing, food security, job security, and custody of their children.

To her, Amani said, the Empowered program means love, support, and not being alone.

“I wouldn’t be here, literally, without them,” she said.

___

(KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2023 KFF Health News. Distributed by Tribune Content Agency, LLC.

If you are in need of support, call or text the National Maternal Mental Health Hotline at 1-833-TLC-MAMA (1-833-852-6262) for free, confidential and 24/7 support, or dial 988 for the Suicide & Crisis Lifeline.

____

More than a dozen states now have near-total abortion bans following the overturning of Roe v. Wade, with limited medical exceptions meant to protect the patient’s health or life.

But among those states, only Alabama explicitly includes “serious mental illness” as an allowable exception. Meanwhile, 10 states with near-total abortion bans (Florida, Georgia, Idaho, Iowa, Kentucky, Louisiana, Ohio, Tennessee, West Virginia and Wyoming) explicitly exclude mental health conditions as legal exceptions, according to an analysis from KFF, a health policy research organization.

Abortion rights advocates and mental health experts say those laws could put women’s lives at risk. A report released last year by the federal Centers for Disease Control and Prevention analyzing maternal deaths between 2017 and 2019 found that that pregnant women and new mothers were more likely to die from mental health-related issues, including suicides and overdoses from substance use disorders, than any other cause. Mental health conditions in total accounted for 23% of maternal deaths with an identified cause.

The Alabama exception, which requires a diagnosis from a psychiatrist in practice for at least three years, doesn’t define “mental illness.” However, it specifies a diagnosis can only be used as an exception “if there is reasonable medical judgment” that the patient might engage in something that could result in her death or loss of the pregnancy.

Florida’s medical exception requires two physicians to certify an abortion is necessary to save the pregnant woman’s life or avoid “serious risk” of substantial impairment to a “major bodily function of the pregnant woman other than a psychological condition.”

Similarly, Tennessee’s law reads, “No abortion shall be deemed authorized … on the basis of a claim or a diagnosis that the woman will engage in conduct that would result in her death or substantial and irreversible impairment of a major bodily function or for any reason relating to her mental health.”

During a special legislative session on abortion in July, Iowa Republican state Rep. Shannon Lundgren defended the exclusion of mental health exceptions during a floor debate, after Rep. Austin Baeth, a Democrat and physician, cited the maternal mental health-related death statistics, the Iowa Capital Dispatch reported.

“I would like to recognize that abortion isn’t a treatment for mental illness,” Lundgren said. “Obviously if we have someone whose life is in danger, a doctor should take an approach to make sure they immediately refer them to inpatient care.”

The National Right to Life Committee, whose model state legislation on abortion bans explicitly exempts abortions “performed on the basis of a claim or a diagnosis that the woman will engage in conduct that would result in her death,” considers mental health exceptions to be untenable because conditions such as anxiety and depression can be treated.

But policies that dismiss mental health as less important than physical health endanger patients, said Dr. Paul Appelbaum, a Columbia University psychiatrist and former president of the American Psychiatric Association and the American Academy of Psychiatry and the Law.

“You can’t take into account a 90% possibility of postpartum psychosis. That clearly should be changed,” Appelbaum said.

“Psychiatric disorders are as real and as treatable as any other medical disorder,” he added. “And to discriminate against people with a vulnerability to disorders developing during or after the partum area is simply unacceptable and unjustifiable.”

Inequities, lack of safety net

When Cindy Herrick of Phoenix became pregnant and gave birth to her son 11 years ago, she felt crushed by intense anxiety.

Thoughts of failure plagued her. “Everyone else looks happy,” she recalled thinking. Meanwhile, “I was scared to touch the baby.”

Herrick suffered depression and anxiety before pregnancy, but they became worse.

“Mental illness wasn’t new to me. The severity of it was new to me,” she said. It took months to find a new combination of psychiatric medications to give her relief. She recalled her husband saying, “I was really worried you weren’t going to make it.”

One in 5 women suffer mental health conditions during pregnancy or postpartum, including depression, anxiety, obsessive-compulsive disorder and, although rare, postpartum psychosis, according to the Maternal Mental Health Leadership Alliance, an organization that advocates for improved mental health care.

Awareness of maternal mental health conditions as crises is critical, said Herrick, a peer support specialist certified in perinatal mental health.

“We have one child because of that,” she said of her own mental health crisis. “I do not want to get pregnant again. And I’m not alone in that.”

Even before the U.S. Supreme Court’s decision in Dobbs v. Jackson Women’s Health Organization last year overturning the federal right to abortion, women with mental health problems faced disproportionate barriers to getting an abortion, said Sarah Roberts, a researcher with the University of California, San Francisco’s Advancing New Standards in Reproductive Health program.

As mental health care remains elusive for many people, experts worry those barriers will be exacerbated.

Fewer than 20 states have state-funded perinatal psychiatry access programs. Thirty-eight states and Washington, D.C., have extended Medicaid coverage for 12 months postpartum, but fewer mental health practitioners accept Medicaid or private insurance compared with other specialties, making it harder for patients to get care.

“People who reported using more substances or having more mental health conditions were more likely to report a policy-related barrier to obtaining an abortion,” Roberts said. In the aftermath of Dobbs, she said, “There’s no reason to believe that things would have become easier.”

Low-income women are disproportionately affected by bans, making cost and travel burdens to get abortions elsewhere. Additionally, the Hyde Amendment, a federal rule renewed annually since 1976, restricts use of federal dollars, including federal Medicaid funds, for most abortions. While 17 states have state-only abortion funds, Hyde affects about 7.8 million reproductive-aged women across more than 30 states where it has effect, according to reproductive health research organization the Guttmacher Institute. Half of those affected are women of color.

Joy Burkhard, the founder and executive director of the Policy Center for Maternal Mental Health, a California-based national nonprofit and think tank where Herrick is a project manager, said the issue should be a bipartisan opportunity to “put systems in place to support women’s mental health delivery.”

Burkhard also stressed that an already taxed health care workforce will be further stressed as more women give birth post-Roe and need care. A report by inequities research organization Mathematica estimated untreated maternal mental health conditions cost $14.2 billion for births in 2017, or $32,000 on average for every untreated mother and her child.

“Everyone’s going to be waiting longer, struggling to access care — and no one’s talking about that,” she said.

Already, an estimated three-quarters of women with mental health conditions are untreated, according to the nonprofit advocacy group Maternal Mental Health Leadership Alliance.

“They need to be offered [mental health care] in a way that a birthing person doesn’t have to scramble to find those services,” said Isha Weerasinghe, a senior mental health policy analyst at the Center for Law and Social Policy, a national nonprofit based in Washington, D.C., focused on addressing poverty barriers.

She said policymakers need to define “medical necessity” for abortions more broadly, by considering what a pregnancy and birth will mean for a woman’s mental health.

Many of the states with strict abortion bans have large communities of color, and Black women are three times as likely and Indigenous women twice as likely as white women to die of pregnancy-related causes.

The CDC’s analysis found mental health-related conditions were the top cause of maternal deaths among Hispanic, white, and American Indian and Alaska Native mothers.

Black women also face disproportionate risk — twice as likely as white moms to suffer from a maternal mental health condition but half as likely to get treatment, according to the Maternal Mental Health Leadership Alliance.

The CDC’s analysis also included a specific report on maternal deaths for American Indian and Alaska Native people, who are more than twice as likely as white mothers to die of pregnancy-related causes but often undercounted in health data due to misclassification. More than 90% of these mothers’ deaths were preventable, the CDC analysis found, with most of their total deaths due to mental health conditions, followed by hemorrhage.

Dr. Allison Kelliher, who is Koyukon Athabascan, Dena, from Nome, Alaska, is a family medicine physician and a researcher at Johns Hopkins School of Nursing and Bloomberg School of Public Health Center for Indigenous Health. She’s practiced and taught medical students in North Dakota, and said the strict abortion bans ignore the disproportionate illnesses and lack of access to care Indigenous people in rural areas already face. Indian Health Service-run clinics are allowed to provide abortions only in rare circumstances, and patients are often forced to cross state lines or drive hours for care.

But, Kelliher said, many young Indigenous people may not have “the privilege of money, of a vehicle, of a provider who knows them.” In addition to disproportionate poverty rates, tribal women are at higher risk of violence and assault, all of which contribute to increased risk of mental health burdens, she added.

“When you couple that with the very stressful experience of pregnancy … you can see why we’re so vulnerable during that time, when we might be suffering from increased risk of mental illness,” she said.

Higher risk, opportunities for prevention

Clinicians, advocates and policy experts fear that abortion bans will cause even more pregnant women and new mothers to need mental health care.

“There’s no question that there’s going to be increased demand for mental health services, both during pregnancy, for women with unwanted pregnancies … and after delivery,” Applebaum, of Columbia University, said.

UC San Francisco’s landmark, oft-referenced Turnaway Study, which followed women for more than a decade who were denied abortions because their pregnancies were past the gestational age limits, found these women were more likely to suffer anxiety and poverty and to stay tethered to an abusive partner.

Pregnancies as a result of rape and incest often need law enforcement involvement to allow for an abortion, and can have chronic, traumatic repercussions on a woman.

Women with previous mental health conditions are at higher risk of developing depression during pregnancy or postpartum according to the National Institutes of Health, and if a woman experienced postpartum depression previously, she’s at higher risk of developing it again. While postpartum psychosis is rare, women with a history or family history of bipolar disorder or psychosis are at higher risk, but many women may develop it for the first time in their life postpartum, said Dr. Adjoa Smalls-Mantey, a psychiatrist at New York-Presbyterian Brooklyn Methodist Hospital.

Some medications to treat psychosis or bipolar disorder, particularly lithium and valproic acid, may cause severe birth defects, especially during the first trimester, she said. Women on these medications are strictly placed on contraception.

But unexpected pregnancies may still occur.

“Say you do have a pregnancy that is unexpected, and you end up having a fetus that has a severe defect that for some may not result in a viable pregnancy, or if it does, can be extremely challenging and devastating,” Smalls-Mantey said. “A lot of options are restricted, and then the child, the mom, have a lot of challenges in their life going forward.”

“I just really fear for the people that don’t even have the resources, what options they’re turning to, and if even more women are becoming suicidal or attempting suicide as a result of this very sentinel event in their lives that they’re not ready for,” she said. “How desperate they could become that they would try to end their life.”

Stateline is part of States Newsroom, a national nonprofit news organization focused on state policy.

©2023 States Newsroom. Visit at stateline.org. Distributed by Tribune Content Agency, LLC.

When several representatives from private health insurance companies called on him a few years ago to offer Medicare Advantage plan contracts so their enrollees could use his hospital, Bleak sent them away.

“Come back to the table with a better offer,” the chief executive recalled telling them. The representatives haven’t returned.

Battle Mountain is in north-central Nevada about a three-hour drive from Reno, and four hours from Salt Lake City. Bleak suspects insurance companies simply haven’t enrolled enough of the area’s seniors to need his hospital in their network.

Medicare Advantage insurers are private companies that contract with the federal government to provide Medicare benefits to seniors in place of traditional Medicare. The plans have become dubious payers for many large and small hospitals, which report the insurers are often slow to pay or don’t pay.

Private plans now cover more than half of all those eligible for Medicare. And while enrollment is highest in metropolitan areas, it has increased fourfold in rural areas since 2010. Meanwhile, more than 150 rural hospitals have closed since 2010, according to the Cecil G. Sheps Center for Health Services Research at the University of North Carolina. Largely rural states such as Texas, Tennessee, and Georgia have had the most closures.

Medicare Advantage growth has had an outsize impact on the finances of small, rural hospitals that Medicare has designated as “ critical access.” Under the designation, government-administered Medicare pays extra to those hospitals to compensate for low patient volumes. Medicare Advantage plans, on the other hand, offer negotiated rates that hospital operators say often don’t match those of traditional Medicare.

“It’s happening across the country,” said Carrie Cochran-McClain, chief policy officer of the National Rural Health Association, whose members include small-town hospitals.

“Depending on the level of Medicare Advantage penetration in individual communities, some facilities are seeing a significant portion of their traditional Medicare patient or beneficiary move into Medicare Advantage,” Cochran-McClain said.

Kelly Adams is the CEO of Mesa View Regional Hospital, another rural hospital in Nevada. He said he applauds Battle Mountain’s Bleak for keeping Medicare Advantage plans out of his hospital “as long as he has.”

Mesa View, which is a little more than an hour’s drive east of Las Vegas, has a high percentage of patients enrolled in Medicare Advantage plans.

“Am I going to say I’m not going to take care of 40% of our patients at the hospital or the clinic?” Adams said, adding that it would be a “tough deal” to be forced to reject patients because they didn’t have traditional Medicare.

Mesa View has 21 Medicare Advantage contracts with multiple insurance companies. Adams said he has trouble getting the plans to pay for care the hospital has provided. They are either “slow pay or no pay,” he said.

In all, the plans owe Mesa View more than $800,000 for care already provided. Mesa View lost about $1.3 million taking care of patients, according to its most recent annual cost report.

NRHA’s Cochran-McClain said the growth in the plans also narrows options for patients because “the contracting that is happening under Medicare Advantage frequently has an influence on steering patients to specific types of providers.” If a hospital or provider does not contract with a Medicare Advantage plan, then a patient may have to pay for out-of-network care. That generally wouldn’t happen with traditional Medicare, which is widely accepted.

At Mesa View, patients must drive to Utah to find nursing homes and rehabilitation facilities covered by their Medicare Advantage plans.

“Our local nursing homes are not taking Medicare Advantage patients because they don’t get paid. But if you’re straight Medicare, they’d be happy to take that patient,” Adams said.

David Allen, a spokesperson for AHIP, an industry trade group formerly known as America’s Health Insurance Plans, declined to respond to Bleak’s and Adams’ specific concerns. Instead, he said enrollees are signing on because the plans “are more efficient, more cost-effective, and deliver better value than original Medicare.”

Centers for Medicare & Medicaid Services press secretary Sara Lonardo said CMS has acted to ensure “that private insurance companies are held accountable for providing quality coverage and care.”

The reach of private Medicare Advantage plans varies widely in rural areas, said Keith Mueller, director of the Rural Policy Research Institute at the University of Iowa College of Public Health. If recent trends continue, enrollment could tip to 50% of all rural Medicare beneficiaries in about three years — with some regions like the Upper Midwest already higher than 50% and others lower, such as Nevada and the Mountain States, but trending upward.

In June, a bipartisan group of Congress members, led by Sen. Sherrod Brown (D-Ohio), sent a letter urging federal agencies to do more to force Medicare Advantage insurers to pay health systems what they owe for patient care.

In an August response, CMS Administrator Chiquita Brooks-LaSure wrote that a final rule issued in April made “impactful changes” to speed up care and address concerns about prior authorization — when a hospital and patient must get advance permission for care to ensure it will be covered by an insurer. Brooks-LaSure noted another proposed rule that, once finalized, could mandate that insurers provide specific reasons for denying care within seven days.

Hospital operators Adams and Bleak also want more federal action, and fast.

Bleak at Battle Mountain said he knows Medicare Advantage plans will eventually move into his area and he will have to contract with them.

“The question is,” Bleak said, “how can we match the reimbursement so that we can sustain and keep our hospitals in these rural areas viable and strong?”

(KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2023 KFF Health News. Distributed by Tribune Content Agency, LLC.

Born with a deadly blood disease, the Finlayson’s daughters — Ada, 9, and Lily, 12 — are the first patients on the West Coast to receive a new gene therapy offered by UCSF Benioff Children’s Hospital Oakland.

Already, Ada is already feeling better 10 weeks after receiving her stem cell transplant. Lily started treatment last week. Both have 90% chance of a permanent cure.

“It’s science, and it’s a miracle,” said their mother Alissa, sitting in the small yard of their guest home in downtown Oakland, far from their small mountain town of Kalispell, Montana.

The children were born with beta thalassemia, a common hereditary red blood cell diseases in China. Unable to create normal blood cells, they’ve needed six-hour-long blood transfusions every 21 days, an intense treatment that carries risk and requires constant monitoring.

Because Chinese orphanages can’t provide treatment, both girls were destined to live short lives.

Then the family found that UCSF’s Oakland hospital is one of three sites in the U.S. to offer the initial test of the therapy, Zynteglo. Now that Zynteglo is FDA approved, the hospital is among 15 in the nation authorized to provide care. Stanford’s Lucile Packard Children’s Hospital, Loma Linda University Children Hospital and Seattle Children’s Hospital will also offer the treatment.

The therapy is a one-time treatment that works by using an engineered virus to deliver a healthy gene into patient cells. It’s not the same as CRISPR, which uses gene editing to fix existing genes. That process is still under review and has not received FDA approval.

“The point of the treatment is to stop those transfusions,” said Dr. Mark Walters, a hematologist and director of the hospital’s Pediatric Blood and Marrow Transplant Program. Walters will follow the girls and other patients for 15 years to see if there are long-term complications, or if they remain free of disease and can be considered truly cured. Other patients are in the hospital’s pipeline.

Beta thalassemia is caused by a single mutation on the gene for hemoglobin, the protein in red blood cells that carries oxygen to tissues. Children develop life-threatening anemia. They can’t gain weight or grow properly.  They suffer organ damage.

By fixing the underlying genetic problem, the new treatment buoys hopes for an estimated 1,300 to 1,500 patients — and opens up the possibility of treating other simple inherited disorders.

Scientists say this approach will be a crucial part of 21st century medicine. An estimated 400 million people worldwide are affected by one of the 7,000 diseases caused by mutations in a single gene. ‌

“This is just one disease we’re treating with the gene therapy,” he said. “There are lots and lots of others to work on. All the lessons we’ve learned about genetics are coming to fruition.”

These customized treatments remain challenging to build and are profoundly expensive. Zynteglo, made by Massachusetts-based biotech company bluebird bio, costs $2.8 million for a single-use vial, making it one of the most expensive drugs in the world.

But money is saved by a lifetime without ongoing care, which can cost many millions of dollars.

Devout Christians, the Finlaysons married in their early 20s and soon bore two biological children in the picturesque 1800s-era town near Glacier National Park, with mountains, alpine trails and lakes filled with trout. Clint, 41, is an engineer; Alissa, 38, is a music teacher who homeschools their children.

Seeking to grow their family, they shared a dream of adoption. They agreed to welcome a child with any medical condition.

“It’s just something that you figure out,” said Alissa. “We have very strong faith that God is going to put the child in our path that he wants us to adopt.”

Charmed by Lily’s cherubic photo, they brought her home.  About a year later, they received a call asking if they would consider adopting a second girl, Ada, with the same medical condition. Their answer was a definitive “Yes.”

They’re now inseparable. Lily is quiet, thoughtful and strong. Ada is an impish ball of energy.

To keep them healthy, “it’s like a weight you put on,” said Clint. “But after awhile, you forget it’s there.”

When the couple learned of the promise of gene therapy, they rushed to put their names on the hospital’s wait list. Friends’ daughters, also adopted from China, had completed the clinical trial and were thriving.

The call came as Alissa was sitting on the family couch, teaching her brood. “I recognized the 510 area code,” she said. “I didn’t hesitate. I said: ‘Yes. When can we come?’ “

“We believe that God has paved a way for us to be here,” she said, pausing for the roar of a passing BART train. “We miss home, but we love how knowledgeable the people here are, and how they treat us as a family.”

Ada went first. From start to finish, the process took four months.

First, her stem cells were collected from her blood. Using a virus, healthy copies of the hemaglobin gene were inserted into these collected cells, then grown for three months.

Chemotherapy killed off the bad stem cells in her bone marrow to make room for the new healthy cells. Her hair fell out. The cells were infused into her body, and found their home in her marrow. They are now beginning to pump out normal hemoglobin.

The beauty of this approach is that patients don’t reject their own bone marrow. And there’s no risk of a dangerous complication caused when foreign cells attack the body’s own tissues.

“You just do the next thing, and the next thing leads you to something else,” said Clint. “Then eventually, holy cow, you’re on the other side of it.”

For the first time in her life, Ada needs no transfusions. While her hemoglobin levels won’t fully stabilize for a year, her spunk is emerging as the disease departs.

Lily’s treatment, delayed by a cell manufacturing error, has now started. It was a major disappointment, because the girls could not be treated together. And instead of staying in Oakland for four months, the family must be here for eight.

The Finlaysons also struggled to gain insurance coverage, and feared medical debt. After two months of daily phone calls with Aetna, coverage is now guaranteed.

“You feel these painful moments and you just want to give up sometimes,” said Alissa. “But we’re blessed to be here. We have an army of family, friends and our church praying for our entire family.”

Impatient with her family’s tale, Ada bounced over, announcing “This is boring to listen to!”

“I don’t really think the magnitude of this has hit them,” Alissa said, offering a hug. “They think getting cured is totally normal.”

That’s normal!

As cold, flu and COVID season sets in, we chatted with Chapman University’s Patricia Lopes, an assistant professor of biology, who studies how sick individuals impact those around them. It’s not as clear-cut as it may seem. Turns out that simply observing a sick individual triggers not only that familiar behavioral response — get away! — but a complex biological response as well.

“The really interesting aspect is, it also changes your physiology,” she said.

Her own experiments and reviews of scientific studies find that, when healthy animals interact with animals showing symptoms of illness, molecular pathways related to immune responses activate. Egg composition changes. And all without those animals actually being sick themselves, as if their bodies are prepping for a fight.

Consider one of the experiments that galvanized Lopes’ curiosity: People watched a slideshow. Their blood composition was measured before and after. After folks saw images of sickness — coughing, sneezing, blisters on the skin, etc. — their blood showed an increased level of molecules that could help respond to infection.

The slideshow was repeated with threatening images of a different sort — such as guns pointed at the viewer — and the blood did not show elevated levels of infection-fighting molecules after viewing.

“So I became really interested and I started reading and trying to understand how generalized this is,” Lopes said. “Is it just in humans? Throughout animal kingdom? I did find that, for a lot of species, from fruit flies to birds to other mammals, we see examples of this.”

When female mice were exposed to sick mice during pregnancy, their babies rebounded from the same sickness more quickly down the line.

But the physiological response to nearby sickness might not always be a positive one. Female Japanese quail housed with sickly-looking animals laid eggs containing more stress hormones, which could have an impact on their offspring.

Lopes has a three-year, $600,000 grant from the National Science Foundation to probe this under-studied phenomenon.

“The objective for this proposal is to study how exposure to disease risk affects the physiology and reproductive investment of uninfected animals, as well as their own responses upon infection,” her abstract for the NSF says. “To accomplish this goal, a host-parasite system (canary – Mycoplasma gallisepticum) will be used, where responses to disease risk have already been demonstrated to occur.

“To quantify how observation of infected symptomatic birds … relative to observation of healthy birds affects animals, the project will 1) use a transcriptomic approach (studying all RNA molecules) to address how multiple organs respond to disease risk over time, 2) evaluate whether and how disease risk information modifies the damage and the time course imposed by a subsequent infection, and 3) quantify changes in reproductive behavior and investment imposed by the presence of disease risk.”

Lopes hopes to have some results starting next summer.

“The interesting thing to me is that it really shows the mind-body connection,” Lopes said. “You’re receiving this signal — watching, smelling, hearing sickness symptoms — and then your immune system changes. This nervous system changing the immune system is a very interesting avenue of research — that your nervous system has this power to change your immune cells and immune response.”

It’s not at all clear how long these responses last, so folks shouldn’t count on them to ward off illness. Vaccination is the way to go as we enter peak cold, flu and COVID season, she said.

This makes me recall with agonizing clarity that episode when my eldest was barely 2, feverish, coughing, runny nose, the whole shebang. I was changing her diaper, standing her up on the dressing table to pull up her jammy pants, when she Exorcist-vomited into my face.

I had managed to escape sickness until then, but was certain my luck had finally run out. Miraculously, though, I didn’t get sick. Maybe this helps explain why.

Lopes says her research aims to unveil the hidden ripple effects of infections. When one individual falls ill, it’s not just their problem — it’s a complex story that can impact the health and behavior of many others.

The total number of abortions provided in the U.S. rose slightly in the 12 months after states began implementing bans on them throughout pregnancy, a new survey finds.

The report out this week from the Society of Family Planning, which advocates for abortion access, shows the number fell to nearly zero in states with the strictest bans — but rose elsewhere, especially in states close to those with the bans. The monthly averages overall from July 2022 through June 2023 were about 200 higher than in May and June 2022.

The changes reflect major shifts after the U.S. Supreme Court in June 2022 handed down its Dobbs v. Jackson Women’s Health Organization ruling, overturning Roe v. Wade, the 1973 ruling that had made abortion legal nationally. Since last year, most Republican-controlled states have enacted restrictions, while most Democrat-controlled states have extended protections for those from out of state seeking abortion.

“The Dobbs decision turned abortion access in this country upside down,” Alison Norris, a co-chair for the study, known as WeCount, and a professor at The Ohio State University’s College of Public Health, said in a statement. “The fact that abortions increased overall in the past year shows what happens when abortion access is improved, and some previously unmet need for abortion is met.” But she noted that bans make access harder — and sometimes impossible — for some people.

Meanwhile, an anti-abortion group celebrated that the number of abortions in states with the tightest restrictions declined by nearly 115,000. “WeCount’s report confirms pro-life protections in states are having a positive impact,” Tessa Longbons, a senior researcher for the Charlotte Lozier Institute, said in a statement.

Abortion bans and restrictions are consistently met with court challenges, and judges have put some of them on hold. Currently, laws are being enforced in 14 states that bar abortion throughout pregnancy, with limited exceptions, and two more that ban it after cardiac activity can be detected — usually around six weeks of gestational age and before many women realize they’re pregnant.

In all, abortions provided by clinics, hospitals, medical offices and virtual-only clinics rose by nearly 200 a month nationally from July 2022 through June 2023 compared with May and June 2022. The numbers do not reflect abortion obtained outside the medical system — such as by getting pills from a friend. The data also do not account for seasonal variation in abortion, which tends to happen most often in the spring.

The states with big increases include Illinois, California and New Mexico, where state government is controlled by Democrats. But also among them are Florida and North Carolina, where restrictions have been put into place since the Dobbs ruling. In Florida, abortions are banned after 15 weeks of pregnancy — and it could go to six weeks under a new law that won’t be enforced unless a judge’s ruling clears the way. And in North Carolina, a ban on abortion after 12 weeks kicked in in July. The states still have more legal access than most in the Southeast.

The researchers pointed to several factors for the numbers rising, including more funding and organization to help women in states with bans travel to those where abortion is legal, an increase in medication abortion through online-only clinics, more capacity in states where abortion remains legal later in pregnancy and possibly less stigma associated with ending pregnancies.

Nationally, the number of abortions has also been rising since 2017.

Just 48 hours after her birth in a Seattle-area hospital in 2021, Layla Babayev was undergoing surgery for a bowel obstruction.

Two weeks later, she had another emergency surgery, and then developed meningitis. Layla spent more than a month in neonatal intensive care in three hospitals as doctors searched for the cause of her illness.

Her parents enrolled her in a clinical trial to check for a genetic condition. Unlike genetic tests focused on a few disease-causing variants that can take months to produce results, the study at Seattle Children’s Hospital would sequence Layla’s entire genome, looking for a broad range of abnormalities — and potentially offer answers in under a week.

The test found Layla had a rare genetic disorder that caused gastrointestinal defects and compromised her immune system. The findings led doctors to isolate her, give her weekly infusions of antibiotics, and contact other hospitals that had treated the same condition, said her father, Dmitry Babayev.

Today, Babayev credits the test, known as rapid whole-genome sequencing, for saving his daughter’s life. “It is why we believe Layla is still with us today,” he said.

Like her disorder, Layla’s experience is rare.

Few hospitalized babies with an undiagnosed illness undergo whole-genome sequencing — a diagnostic tool that allows scientists to quickly identify genetic disorders and guide clinicians’ treatment decisions by analyzing a patient’s complete DNA makeup. That’s largely because many private and public health insurers won’t cover the $4,000-to-$8,000 expense.

But an alliance of genetic testing companies, drugmakers, children’s hospitals and doctors have lobbied states to increase coverage under Medicaid — and their efforts have begun to pay off.

Since 2021, eight state Medicaid programs have added rapid whole-genome sequencing to their coverage or will soon cover it, according to GeneDX, a provider of the test. That includes Florida, where the Republican-controlled legislature has resisted expanding Medicaid under the Affordable Care Act.

The test is also under consideration for coverage in Georgia, Massachusetts, New York and North Carolina, according to the nonprofit Rady Children’s Institute for Genomic Medicine, another major provider of the test.

Medicaid coverage of the test can significantly expand access for infants; the state-federal program that insures low-income families covers more than 40% of children in their first year of life.

“This is an extraordinary, powerful test that can change the trajectory of these children’s diseases and our own understanding,” said Jill Maron, chief of pediatrics at Women & Infants Hospital in Providence, Rhode Island, who has conducted research on the test.

“The only thing interfering with more widespread use is insurance payment,” she said.

Proponents of whole-genome sequencing, which has been commercially available for about six years, say it can help sick infants with potentially rare diseases avoid a months- or years-long odyssey of tests and hospitalizations without a clear diagnosis — and increase survival.

They also point to studies showing rapid whole-genome testing may lower overall health costs by reducing unnecessary hospitalizations, testing and care.

But the test may have its limits. While it is better at identifying rare disorders than older genetic tests, whole-genome sequencing detects a mutation only about half of the time — whether because the test misses something or the patient does not have a genetic disorder at all.

And the test raises ethical questions because it can also reveal that babies — and their parents — have genes that put them at increased risk for adult-onset conditions such as breast and ovarian cancer.

Even so, some doctors say sequencing offers the best chance to make a diagnosis when more routine testing doesn’t provide an answer. Pankaj Agrawal, chief of neonatology at the University of Miami Miller School of Medicine, said only about 10% of babies who could benefit from whole-genome sequencing are getting it.

“It is super frustrating to have sick babies and with no explanation what is causing their symptoms,” he said.

Some private insurers now cover the test with certain limitations, including UnitedHealthcare and Cigna, but others do not.

Even in states that have adopted the test, coverage varies. Florida will add the benefit to Medicaid later this year for patients up to age 20 who are in hospital intensive care units.

Florida state Rep. Adam Anderson, a Republican whose 4-year-old son died in 2019 after being diagnosed with Tay-Sachs disease, a rare genetic disorder, led the push for Medicaid to cover sequencing. The new state Medicaid benefit is named for his son, Andrew.

Anderson said persuading his GOP colleagues was challenging, given they typically oppose any increase in Medicaid spending.

“As soon as they heard the term ‘Medicaid mandate,’ they shut down,” he said. “As a state, we are fiscally conservative, and our Medicaid program is already a huge program as it is, and we want to see Medicaid smaller.”

Anderson said it took doctors more than a year to diagnose his son — an emotionally difficult time for the family as Andrew endured numerous tests and trips to specialists in several states.

“I know what it’s like to not get those answers as doctors try to figure out what is wrong, and without genetic testing it’s almost impossible,” he said.

A Florida House analysis estimated that if 5% of babies in the state’s neonatal intensive care units got the test each year, it would cost the Medicaid program about $3.3 million annually.

Florida’s legislative leaders were persuaded in part by a 2020 study called Project Baby Manatee, in which Nicklaus Children’s Hospital in Miami sequenced the genomes of 50 patients. As a result, 20 patients — about 40% — received a diagnosis, leading to changes in care for 19 of them.

The estimated savings exceeded $3.7 million — a nearly $2.9 million return on investment, after the cost of the tests, according to the final report.

“We have shown that we can justify this as a good investment,” said Parul Jayakar, director of the hospital’s Division of Clinical Genetics and Metabolism, who worked on the study.

___

(KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2023 KFF Health News. Distributed by Tribune Content Agency, LLC.

Since losing her first pregnancy four months ago, 32-year-old Lulu has struggled to return to her body’s old rhythms. Lulu, who asked to be identified by her first name to protect her privacy, bled for six full weeks after her miscarriage and hasn’t had a normal menstrual cycle since.

Such disruptions aren’t uncommon after miscarriage, which affects roughly 1 in 10 known pregnancies. But for Lulu, they’ve also served as a persistent reminder that she couldn’t access the drug mifepristone — her preferred method of care — to help her body pass the miscarriage. Instead, her doctor prescribed a drug called misoprostol, which on its own is less effective.

“I recall clarifying with her about the kind of medication I would get,” Lulu said. “When she said misoprostol … I was really shocked. I made her repeat herself.”

Patients like Lulu are, experts say, a little-recognized casualty of America’s fractious abortion wars. In other contexts, both mifepristone and misoprostol are used to voluntarily terminate pregnancies, and both medications are often called “abortion pills.”

But while misoprostol is indicated for a wide range of medical uses, including labor induction and ulcer treatment, mifepristone is taken almost exclusively to induce abortions and manage miscarriages, the latter of which is an off-label use. The federal government regulates it tightly, as do most state governments. The drug remains widely unavailable to patients experiencing pregnancy loss — even in states that do not otherwise restrict abortion, for a variety of regulatory, cultural and political reasons.

“There’s been this conflation of abortion and miscarriage management,” said Dr. Elise Boos, an assistant professor of obstetrics and gynecology at Vanderbilt University and a practicing OB-GYN. “There’s so much stigma and worry about the optics — and as a result, patients get suboptimal care for miscarriage.”

Miscarriage patients have three options for passing pregnancy tissue, which can cause hemorrhage or infection if not removed: medication, minor surgery or “expectant management” — waiting for the body to complete the process on its own. Since 2018, the American College of Obstetricians and Gynecologists has recommended a two-drug protocol of mifepristone and misoprostol for patients who elect the medication route. Mifepristone is taken first, to “loosen” pregnancy tissue from the uterine wall. This is followed by misoprostol to expel the tissue.

A study published in July in the Journal of the American Medical Association found that between 2016 and 2020, just 1% of more than 22,000 patients nationwide who took medicine to help pass their miscarriages received the recommended two-drug protocol.

That leaves tens of thousands of patients like Lulu to face longer miscarriage processes and potential medical complications, doctors say. While misoprostol also is a safe and effective treatment on its own, physicians stress, it is markedly less effective than the two-drug combination — requiring follow-up surgery to complete the miscarriage in roughly 1 in 4 cases.

“It felt like that was the reason my miscarriage was dragging on and the reason I bled for so long,” Lulu said in private messages with Stateline on the discussion site Reddit, where she has chronicled her experience with miscarriage. “Of course, [it’s] hard to know … but I’m convinced I would have healed much faster” with mifepristone.

Policy, stigma limit care

Doctors and reproductive health advocates blame a thicket of overlapping cultural, political and regulatory factors for limiting patient access to mifepristone.

Decades of federal data show that the drug only rarely causes serious side effects and is responsible for fewer deaths than Tylenol. The two-drug combination is just as safe as misoprostol alone.

More than 90 countries have approved mifepristone since the late 1980s — including Canada, which since 2017 has permitted any physician or nurse practitioner to prescribe mifepristone and any pharmacist to dispense it.

In the United States, however, mifepristone is typically only available at hospitals, health clinics and doctors’ offices that routinely provide abortions or that employ specialists in “complex family planning,” a branch of gynecology focused on abortion, contraception and miscarriage management.

Some retail pharmacies also have begun to stock the drug since January of this year, when the Food and Drug Administration loosened some long-standing restrictions, said Abby Long, a spokesperson for Danco Laboratories, which manufactures mifepristone under the name brand Mifeprex.

But the names of those pharmacies are confidential, and few have chosen to publicize the fact that they carry the drug, Long said. Both CVS and Walgreens, the country’s largest pharmacy chains, have applied for permission to dispense mifepristone, but neither has been certified yet.

Clinics that stock mifepristone also represent a small and seldom advertised subset of health care providers, said Dr. Michael Belmonte, a practicing OB-GYN in Washington, D.C., and a fellow at the American College of Obstetricians and Gynecologists. Such facilities may be inaccessible to patients living in rural or low-income communities. There also is no publicly available list of clinics, offices or pharmacies that provide mifepristone, said Belmonte.

“Typically, it’s on the individual physician to understand their community,” Belmonte said. “Even for me as a complex family planning specialist, I understand how complicated that is — and it’s only more complicated, unnecessarily so, for a general OB-GYN or someone in family practice.”

Some miscarriage patients also may balk at turning to a clinic or health center better known for performing abortions. Federal law further requires that all patients who receive mifepristone sign a form acknowledging their desire to end their pregnancy, even if they’ve experienced a miscarriage.

“It did feel kind of cruel to send me to what was effectively an abortion clinic for care of the loss of my wanted pregnancy,” said Erika, a Pennsylvania woman whose OB-GYN referred her to a complex family planning clinic for a mifepristone prescription.

For more than a decade, the FDA has regulated mifepristone under a special framework — called a “Risk Evaluation and Mitigation Strategy,” or REMS — used for drugs that the FDA maintains could pose extra risks to patients. The framework requires providers to register with a drug’s manufacturer before prescribing or dispensing it.

While not complicated, especially for independent clinics and pharmacies, the certification process can dissuade providers who don’t frequently dispense mifepristone, particularly those who don’t provide abortions, Belmonte said. Obtaining certification has also proved time-consuming for the major pharmacy chains, which face additional hurdles related to their large geographic footprints and companywide databases.

At least 15 states place additional restrictions on prescribing and dispensing mifepristone, according to the nonprofit health care policy research organization KFF.

Typically, these restrictions bar nurse practitioners or physician assistants from prescribing abortion medications or require that patients receive mifepristone directly from a physician. Such rules will prevent pharmacies from supplying the medication in much of the country, Long said, even after the change to federal regulations.

State abortion bans also impede miscarriage care, medical groups have said. Since the Supreme Court overturned Roe v. Wade last year, 14 states have banned abortion, some with explicit allowances for treatment that saves the life of the person giving birth or that eases miscarriage. But not all state laws make that distinction, said Alina Salganicoff, the director for women’s health policy at KFF, and many are written in confusing, nonmedical language that doctors struggle to interpret in real-life situations.

In Louisiana, for instance, doctors asked the state Department of Health to clarify whether the state’s near-total abortion ban extends to the treatment of miscarriages, ectopic pregnancies and other pregnancy complications. As currently written, state law requires physicians to confirm a miscarriage by ultrasound before beginning treatment. Republican legislators voted down a proposed bill in May that would have granted physicians more discretion when making care decisions.

“There’s a difference between the legal status of mifepristone for miscarriage care in states that are extremely hostile to abortion and the understandable concerns that providers might have given the hostility of that climate,” said Julia Kaye, a senior staff attorney with the American Civil Liberty Union’s Reproductive Freedom Project.

Kaye points, in particular, to letters that more than 20 Republican state attorneys general sent to major pharmacy chains earlier this year, threatening legal action against providers that dispensed or administered mifepristone, with no allowances for miscarriage care.

Legislation proposed in Alabama, Arizona and Iowa would have made it a felony to “manufacture, distribute, prescribe, dispense, sell or transfer” mifepristone for any reason.

In this political climate, stigma prevents many clinicians from prescribing mifepristone — even absent other legal or regulatory hurdles, said Dr. Debra Stulberg, the chair of the Department of Family Medicine at the University of Chicago. Stulberg leads a demonstration project aimed at helping community hospitals, federally qualified health centers and other primary care providers adopt mifepristone, which she called “the gold standard” for medically managing miscarriage.

“We see these vicious, reinforcing cycles where the culture at the local level is really responsive to policy and politics,” Stulberg said. “We’re both combating the stigma associated with abortion and overcoming unfounded but understandable fears about what it means to provide this medication.”

A lack of ‘empathy’

Abortion opponents dispute the notion that mifepristone restrictions disrupt or worsen care for early pregnancy loss. The American Association of Pro-Life Obstetricians and Gynecologists, a professional group, has argued that the adoption of mifepristone for miscarriage care is part of a larger campaign to make the drug more available for elective abortion.

Rules that require in-person appointments or bar pharmacies from shipping mifepristone in the mail help guarantee that patients receive adequate screening and follow-up care, said Dr. Kathleen Raviele, a retired OB-GYN and the former president of the Catholic Medical Association.

Misoprostol is also effective on its own, said Raviele, who argues that the two-drug regimen only serves to add cost and complication to the miscarriage management process and “confuse women” who associate mifepristone with elective abortion.

In her former practice, Raviele counseled patients to wait for their bodies to pass pregnancy tissue naturally, a process that can take up to eight weeks. She would later prescribe misoprostol or schedule a surgical procedure if the patient didn’t pass the miscarriage or related pregnancy tissue — an approach that she said requires a longer, more intensive engagement between provider and patient.

“I think that, because abortion is legal in this country, doctors and other health care workers don’t treat women having miscarriages with the empathy and sympathy they should,” Raviele said. “There’s this attitude of, ‘Well it’s early — you can always get pregnant again.’”

But physicians and reproductive health advocates say that approach ignores both the preferences and economic realities of many patients, who may lack the time, transportation or financial resources to undergo weeks of follow-up appointments. Patients who manage their pregnancy loss with medication may also have emotional reasons for making that choice: a desire to gain control, for instance, or to shorten the duration of a painful experience.

One 33-year-old woman in West Virginia, who asked to remain anonymous, told Stateline that she chose expectant management for a recent miscarriage because a clotting disorder makes surgery riskier for her — and her doctor never told her medication was an option.

For more than seven weeks, she wrote in a message on Reddit, she passed “golf ball-size clots” and reported for “agonizing” weekly follow-up appointments at her doctor’s office.

“I see all the happy pregnant women and hear babies’ heartbeats from the ultrasound room,” she said. “I would have given anything to not go through such a long process.”

Some lawmakers and advocates are seeking to make mifepristone more available to miscarriage patients — though their efforts run up against parallel, opposing campaigns from anti-abortion groups.

One such anti-abortion group, the Alliance for Hippocratic Medicine, sued the FDA last November to challenge the agency’s initial approval of mifepristone. In August, the 5th U.S. Circuit Court of Appeals ruled the FDA should place further restrictions on the drug — a decision that the Supreme Court has stayed and is expected to take up on appeal next term.

Elsewhere in the country, the ACLU and attorneys general in 12 states sued the FDA to overturn its existing restrictions on mifepristone, arguing that they conflict with the drug’s well-documented safety record. Those cases are ongoing in federal court.

Since October 2022, a coalition of almost 50 leading medical associations and health advocacy groups and eight Democratic senators have also petitioned the FDA and Danco Laboratories to make miscarriage management an official indication for mifepristone.

While drugs are routinely used for off-label purposes in the United States, adding the new indication could further legitimize the use of mifepristone in miscarriage care, advocates argue, and potentially keep the drug available in the face of abortion bans or restrictions.

Long, the Danco spokesperson, said the company is considering a future update to the mifepristone label, but has not started the process of revising it.

In the meantime, many doctors and researchers say they are working to further document and publicize the role of mifepristone in miscarriage care. Vanderbilt’s Dr. Boos, who has researched trends in the treatment of early pregnancy loss, said providers have a responsibility to educate patients and policymakers alike about the science behind different care options.

“These fights are being litigated by lawyers, not clinicians,” Boos said of mifepristone prescriptions and abortion bans. “They don’t seem to understand that if we lose mifepristone, we lose it for medication abortions, yes — but we also lose it for all these other patients.”

Stateline is part of States Newsroom, a national nonprofit news organization focused on state policy.

©2023 States Newsroom. Visit at stateline.org. Distributed by Tribune Content Agency, LLC.

WASHINGTON — The White House on Tuesday announced the release of roughly $3.7 billion in funding to help lower-income households afford their home heating costs.

The funding, according to a senior administration official, represents 90% of the allocated funding for the program known as the Low Income Home Energy Assistance Program for fiscal 2024, with the balance being held back in case there is a budgetary adjustment in the final full-year appropriation for the program, which is run by the Department of Health and Human Services.

“We’ve got news because the president worked so hard to get a bipartisan infrastructure law passed,” HHS Secretary Xavier Becerra said on a call with reporters. “We know that in the next several weeks — we’re beginning to figure out how people need to be able to stay warm.”

Six million families were reliant on LIHEAP for heating or cooling last year, the secretary said. The funding largely comes from regular appropriations through the current continuing resolution, with an additional $100 million from the Biden administration’s bipartisan infrastructure law. The funding released Tuesday (and the overall allocation) does not match last year’s level, however, because that included emergency supplemental funding.

“In addition, the Biden-Harris administration is looking at every avenue to increase support to the American people, and we’re also looking at opportunities to potentially increase LIHEAP funding as well,” a senior administration official said in response to a question about the allocation at this point last year being $4.5 billion.

In the Northeast, home heating oil prices are running 26% below levels at this time last year, according to data from the Massachusetts Department of Energy Resources, with retail propane down about 5%.

How to see if you’re eligible

In conjunction with the announcement, the administration released a new online tool to help people determine their eligibility for funds, which HHS Office of Community Services Director Lanikque Howard said was an important advancement because eligibility requirements vary.

“As a block grant, LIHEAP grant recipients have flexibility in establishing program eligibility requirements. And with varying income eligibility requirements all across the country, it can be difficult for individuals and households to determine if they might be eligible for the program and whether they should invest the time and energy to apply,” Howard said.

Mitch Landrieu, the White House infrastructure coordinator, put the funding in the context of President Joe Biden’s broader economic agenda.

“The purpose of this is to lower energy bills for households in all 50 states, in D.C. and the territories,” Landrieu said. “This funding is a lifeline for low-income communities, especially as winter approaches. It’s going to allow families to afford their home energy costs on top of the other essentials like food and medicine and housing.”

©2023 CQ-Roll Call, Inc., All Rights Reserved. Visit rollcall.com. Distributed by Tribune Content Agency, LLC.

About a quarter of large U.S. employers heavily restrict coverage of legal abortions or don’t cover them at all under health plans for their workers, according to the latest employer health benefits survey by KFF.

The findings demonstrate another realm, beyond state laws, in which access to abortion care varies widely across America since the Supreme Court overturned the constitutional right to abortion last year in Dobbs v. Jackson Women’s Health Organization.

More than ever, where someone works and the constraints of their health insurance can determine whether an abortion is possible. Workers without coverage are left to pay out-of-pocket for abortion care and related costs.

In 2021, the median costs for people paying out-of-pocket in the first trimester were $568 for a medication abortion and $625 for an abortion procedure, according to a report from Advancing New Standards in Reproductive Health at the University of California-San Francisco. By the second trimester, the cost increased to $775 for abortion procedures.

KFF’s 2023 annual survey found that 10% of large employers — defined as those with at least 200 workers — don’t cover legal abortion care under their largest job-based health plan. An additional 18% said legal abortions are covered only in limited circumstances, such as when a pregnancy is the result of rape or incest, or endangers a person’s life or health.

The share of employers that said they don’t cover abortion under any circumstances “is bigger than I would have expected,” said Matthew Rae, an associate director at KFF who helped conduct the survey.

So far, 14 states, mostly in the South and Midwest, have enacted near-total abortion bans, and an additional seven states have instituted gestational limits between six and 18 weeks. Abortion is legal in 24 states and the District of Columbia.

Sharply divergent state abortion laws solidified in the aftermath of the Dobbs decision compound the complexity for employers with workers across multiple states, Rae said. Many large companies employ people in places with vastly different abortion policies, and their health benefits are more likely to cover dependents who may live elsewhere.

“Those dependents can be college kids — and college kids can be anywhere — or any other type of dependent who could just spread out over an area much larger than where you just have actual physical establishments,” Rae said.

The KFF survey found that about a third of large companies said they cover legal abortions in most or all circumstances; the largest companies, with at least 5,000 employees, were more likely to offer the benefit compared with smaller firms. An additional 40% said they were unsure of their coverage — perhaps because employer policies are in flux, Rae said.

Employer health plans’ treatment of abortion has changed little since the Dobbs decision, the survey found. Among companies that said they did not cover legally provided abortion services or covered them in limited circumstances, 3% reduced or eliminated abortion coverage. By contrast, of the large companies that generally covered abortion, 12% added or significantly expanded coverage.

That’s in sharp contrast to the rapidly changing laws governing abortion access in the states. It’s unclear whether workers at companies that don’t cover abortion or heavily restrict coverage are located primarily in states that have outlawed the procedure.

The KFF survey includes information from more than 2,100 large and small companies on their health benefits and the related costs for workers. Annual premiums for family coverage rose 7% on average this year, to $23,968, with employees on average contributing $6,575 toward that cost. The jump in premiums represents a notable increase compared with that of the previous year, when there was virtually no growth in those costs. Average yearly deductibles for workers were $1,735 for single coverage, a cost that was relatively unchanged.

One tactic employers use is to provide separate benefits for abortion-related expenses. In response to increasingly restrictive state abortion laws and the Supreme Court’s decision, large companies — such as Amazon, Starbucks, Disney, Meta, and JPMorgan Chase, among others — announced they would pay for employees’ abortion-related travel expenses.

However, the KFF survey found that a small share of large employers said they provide or plan to provide workers with financial help to cover abortion-related travel expenses. Companies with at least 5,000 workers are the most likely to provide that assistance. Overall, 7% of large employers said they provide or plan to provide financial assistance to employees who must travel out of state for abortion care.

According to the Brigid Alliance, a New York-based nonprofit that helps people with logistics and defrays abortion-related costs, average travel costs now exceed $2,300. As restrictive laws proliferate, distances traveled have also increased since the Dobbs ruling, with each person on average traveling roughly 1,300 miles round trip in the first half of 2023.

Recent research published by job-search firm Indeed, the Institute of Labor Economics, and academics from the University of Southern California and the University of Maryland found that employers that announced abortion-related travel benefits saw an 8% increase in clicks on their job postings compared with similar jobs at comparable employers that did not announce such a policy.

However, job satisfaction among existing employees also dropped at those companies, with ratings of senior management dropping “8%, driven by workers in typically male-dominated jobs,” they wrote, “illustrating both the potential perks and pitfalls for companies that choose to wade into contentious political waters.”

KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.

©2023 KFF Health News. Distributed by Tribune Content Agency, LLC.

The Biden administration is making it easier for doctors and nurses to treat homeless people wherever they find them, from creekside encampments to freeway underpasses, marking a fundamental shift in how — and where — health care is delivered.

As of Oct. 1, the Centers for Medicare & Medicaid Services began allowing public and private insurers to pay “street medicine” providers for medical services they deliver anyplace homeless people might be staying.

Previously, these providers weren’t getting paid by most Medicaid programs, which serve low-income people, because the services weren’t delivered in traditional medical facilities, such as hospitals and clinics.

The change comes in response to the swelling number of homeless people across the country, and the skyrocketing number of people who need intensive addiction and mental health treatment — in addition to medical care for wounds, pregnancy, and chronic diseases like diabetes.

“It’s a game-changer. Before, this was really all done on a volunteer basis,” said Valerie Arkoosh, secretary of Pennsylvania’s Department of Human Services, which spearheaded a similar state-based billing change in July. “We are so excited. Instead of a doctor’s office, routine medical treatments and preventive care can now be done wherever unhoused people are.”

California led the nation when its state Medicaid director in late 2021 approved a new statewide billing mechanism for treating homeless people in the field, whether outdoors or indoors in a shelter or hotel. “Street medicine providers are our trusted partners on the ground, so their services should be paid for,” Jacey Cooper told KFF Health News.

Hawaii and Pennsylvania followed. And while street medicine teams already operate in cities like Boston and Fort Worth, Texas, the new government reimbursement rule will allow more health care providers and states to provide the services.

“It’s a bombshell,” said Dave Lettrich, executive director of the Pittsburgh-based nonprofit Bridge to the Mountains, which provides outreach services to street medicine teams in Pennsylvania. “Before, you could provide extensive primary care and even some specialty care under a bridge, but you couldn’t bill for it.”

Under the new rule, doctors, nurses, and other providers can get reimbursed to care for patients in a “non-permanent location on the street or found environment,” making it the first time the federal government has recognized the streets as a legitimate place to provide health care. This will primarily affect low-income, disabled, and older people on Medicaid and Medicare.

“The Biden-Harris administration has been focused on expanding access to health care across the country,” said CMS spokesperson Sara Lonardo, explaining that federal officials created a new reimbursement code at the request of street medicine providers who weren’t consistently getting reimbursed.

The White House unveiled an ambitious strategy this year to reduce homelessness in America 25% by 2025, in part by plowing health care money into better care for those living on the streets.

Legislation pending in Congress would further expand reimbursement for street medicine, taking aim at the mental health and addiction crisis on the streets. The bipartisan bill, introduced earlier this year, has not yet had a committee hearing.

Nearly 600,000 people are homeless in America, based on federal estimates from 2022, and on average they die younger than those who have stable housing. The life expectancy for homeless people is 48, compared with the overall life expectancy of 76 years in the U.S.

More than 150 street medicine programs operate across the country, according to street medicine experts. At least 50 are in California, up from 25 in 2022, said Brett Feldman, director of street medicine at the University of Southern California’s Keck School of Medicine.

Feldman spearheaded the state and national efforts to help street medicine providers get paid, alongside the Street Medicine Institute. They submitted a formal request to the Biden administration in January 2022 to ask for a new street medicine billing code.

In the letter, they argued that street medicine saves lives — and money.

“This is done via walking rounds with backpacks, usually working out of a pickup truck or car, but is also done via horseback, kayak, or any other means to reach hard-to-reach people,” they wrote. “The balance of power is shifted to the patient, with them as the lead of their medical team.”

Street medicine experts argue that by dramatically expanding primary and specialty care on the streets, they can interrupt the cycle of homelessness and reduce costly ambulance rides, hospitalizations, and repeated trips to the emergency room. Street medicine could help California save 300,000 ER trips annually, Feldman projected, based on Medicaid data. Some street medicine teams are even placing people into permanent housing.

Arkoosh said there’s already interest bubbling up across Pennsylvania to expand street medicine because of the federal change. In Hawaii, teams are plotting to go into remote encampments, some in rainforests, to expand primary and behavioral health care.

“We’re seeing a lot of substance abuse and mental health issues and a lot of chronic diseases like HIV,” said Heather Lusk, executive director of the Hawai’i Health & Harm Reduction Center, which provides street medicine services. “We’re hoping this can help people transition from the streets into permanent housing.”

But the federal change, undertaken quietly by the Biden administration, needs a major public messaging campaign to get other states on board and to entice more providers to participate, said Jim Withers, a longtime street medicine provider in Pittsburgh who founded the Street Medicine Institute.

“This is just the beginning, and it’s a wake-up call because so many people are left out of health care,” he said.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.

©2023 Kaiser Health News. Visit khn.org. Distributed by Tribune Content Agency, LLC.

Scientists from BU, the University of Glasgow and University of Sydney have found new evidence that links playing rugby union — either at the amateur or elite level — with developing the degenerative brain condition chronic traumatic encephalopathy.

Much of the focus around CTE has involved American football players, and their exposure to repeated head impacts and concussion head injuries. Researchers are only able to diagnose CTE in those who have died.

This latest study looked at the results of postmortem brain examinations of 31 former amateur and elite rugby union players whose brains were donated for research purposes in the U.S., United Kingdom, and Australia. CTE was found in 68% of the brains examined, and in both amateur and elite players.

The risk for developing CTE was tied with the length of a player’s rugby career — with each additional year of play adding 14% to CTE risk. Player position or level of participation, either amateur or elite, did not appear to influence CTE risk.

“CTE is a preventable disease,” said Ann McKee, director of the BU CTE Center and UNITE brain bank.

“There is an urgent need to reduce not only the number of head impacts, but the strength of those impacts, in rugby as well as the other contact sports, in order to protect and prevent CTE in these players,” added McKee, a co-author of the rugby CTE study.

Rugby union is known to have a high risk of concussions, with injury rates highest in the professional game.

In this study, the average rugby career length was around 18 years, with an equal number of forward and backs. Twenty-three (74%) played rugby exclusively as amateurs, with eight (26%) reaching elite level.

“These results provide new evidence regarding the association between rugby union participation and CTE,” said Willie Stewart, consultant neuropathologist and honorary professor at the University of Glasgow.

“Specifically, our data show risk is linked to length of rugby career, with every extra year of play increasing risk,” Stewart added. “Based on this it is imperative that the sport’s regulators reduce exposure to repeated head impacts in match play and in training to reduce risk of this otherwise preventable contact sport related neurodegenerative disease.”

Hitting the snooze button doesn’t hurt, and might even help one wake up, a new study has found.

While use of the snooze button tends to carry negative connotations, a study published Wednesday in the Journal of Sleep Research found otherwise. Lead researcher Tina Sundelin said in a statement, “Those who snooze on average sleep slightly shorter and feel more drowsy in the morning compared to those who never snooze.” However, they found “no negative effects of snoozing on cortisol release, morning tiredness, mood, or sleep quality throughout the night.”

Snoozing for an extra 30 minutes “improved or did not affect performance on cognitive tests directly upon rising compared with an abrupt awakening,” Sundelin and fellow researchers at the University of Stockholm said in the study. “A brief snooze period may thus help alleviate sleep inertia, without substantially disturbing sleep.”

They were even a little more quick-thinking when they did get up, she said.

“For those who usually snooze, it might even be helpful with waking,” Sundelin told NBC News.

In the two-pronged study, researchers looked at snoozing behavior in 1,732 respondents of different ages and walks of life. Tiredness and wanting to awaken slowly rather than be yanked into the day were snoozers’ two main motivations. In all, 69% of the respondents hit snooze or set several alarms at least occasionally, and 60% of those said they usually or always fall asleep between alarms.

Next, 31 regular snoozers spent two nights in a sleep lab, hitting snooze for 30 minutes one morning, and getting up at first alarm the next. Snoozers turned out to be calmer.

“In the snooze condition no one had to wake up from deep sleep, and the snoozers performed a bit better on cognitive tests right upon waking,” the researchers said.

_____

©2023 New York Daily News. Visit at nydailynews.com. Distributed by Tribune Content Agency, LLC.

When does a trickle sound like a waterfall? After you get hearing aids, according to Charlie Pierce.

“I spent so many years not hearing the things that I can hear now. I can hear the smallest noise in the next room,” he says. “It’s incredible.”

Charlie’s improved hearing has done more than amplify the sounds he hears ― it helped the 55-year-old start a new career.

Construction work and overcoming addiction

For over 40 years, Charlie worked in construction. But his career was beginning to take a toll on his body, and he felt drawn to a different path — working with the Transportation Security Administration (TSA).

“I started the application process to work for the TSA, but I talked myself out of it,” Charlie recalls, feeling that the timing wasn’t right.

Charlie continued his job as a construction superintendent in Tennessee. He also overcame a 38-year addiction to drugs and alcohol, thanks to attending two addiction recovery programs in 2019. He and wife, Amy Pierce, were married the following year.

“Amy and I agreed that we wouldn’t make any other major life changes until I was a year sober,” he says.

Making a change

In September 2022, the Pierces decided to relocate to Faribault, Minnesota, to be closer to family. When Charlie saw an advertisement for TSA positions at the Minneapolis-St. Paul International Airport, he knew just what to do.

“It seemed like a God moment that I was seeing it again, so I applied,” he says.

During the application screening and medical exam process, Charlie learned that years of construction and power tools had taken more than just a toll on his muscles and joints. He had hearing loss that could potentially exclude him from a TSA career.

Time was of the essence for Charlie in addressing his hearing issue. He knew that his application would be denied for medical reasons if he failed the hearing test.

“I knew I needed to see someone right away,” he says. “I wasn’t just going to give up at that point.”

Audiology, hearing aids to the rescue

A week later, Charlie’s hearing was evaluated by audiologist Dana McCray, Au.D., at Mayo Clinic Health System in Albert Lea, Minnesota.

“When Charlie arrived in my office, it was evident that it was extraordinarily important to him to get into TSA,” says Dr. McCray. “He shared some of his story with me and how he was really working hard to get on a better path.”

Dr. McCray thoroughly tested Charlie’s hearing and discovered that his damage was different in each ear.

“In most cases when hearing changes, it happens equally, left and right,” says Dr. McCray. “His loss is milder on the left and moderately severe on the right. We may never really know what caused the greater loss for Charlie in just one ear.”

Dr. McCray explained the degree of Charlie’s hearing loss to him and recommended hearing aids to improve it. Hearing aids digitally process incoming sounds. They make soft sounds more audible while keeping a limit on the overall output so that the volume isn’t too loud.

Charlie was fitted with hearing aids that have a small instrument behind the ear connected to a domed earpiece in each canal. Dr. McCray explains that this style is comfortable for people who wear glasses like Charlie. They are also well-suited for the field he wanted to enter.

“Charlie needed something that would help him hear as clearly as possible in difficult environments with background noise,” says Dr. McCray. “His hearing aids are the same model in each ear, but they are programmed differently based on his hearing loss.”

Dr. McCray explains that some professions — including construction — increase the risk of hearing loss due to loud noises from equipment or instruments used. Some other examples include mechanics, truck drivers, farmers, factory workers, surgeons and dentists.

“If your employer requires hearing protection on the job, use it. Noisy hobbies, like woodworking, hunting and engine repairs, should also include hearing protection when sound levels are high,” says Dr. McCray. “Hearing loss has an additive effect over a lifetime so preserving [hearing] early makes a difference.”

Moving forward

Two weeks after his initial appointment, Charlie got his new hearing aids. Dr. McCray completed the necessary paperwork and testing so he would clear the employment medical evaluation. He was hired by the TSA and began training.

In July, Charlie was selected to give the graduation address at the end of TSA training. He shared his speech with Dr. McCray at a follow-up appointment.

“It was really moving to know that all his effort and hard work had brought him to that grand conclusion,” says Dr. McCray. “I am really proud of him.”

Charlie says he is enjoying his new career at the airport and is grateful for the expertise of the Mayo Clinic Health System Audiology team.

“The work that Dr. McCray did was above and beyond to help make all this stuff come to fruition for me,” he says. “She is like a master of her craft and knew exactly what we needed to do.”

___

©2023 Mayo Clinic News Network. Visit newsnetwork.mayoclinic.org. Distributed by Tribune Content Agency, LLC.

Jodi Bobbitt, the school nurse at William Ramsay Elementary in Alexandria, Virginia, is always ready to see children with a wide range of injuries and illnesses. One day during the first week of school, the parade started before the first bell when a little girl walked in with red, irritated eyes.

Then it got busy.

A student fell from the monkey bars and another tripped while playing tag. Two kids hit each other’s heads with lunchboxes and needed ice packs. A young boy had a stomachache. Bobbitt also saw her regular kiddos: one who has special needs and uses a wheelchair and another who has diabetes and gets his blood sugar checked daily before lunch.

“Every day, I’m seeing more and more [youngsters],” Bobbitt, who is a certified nurse practitioner, said with a smile. “I saw more today than yesterday, so we just have to wait and see what the year has in store.”

As the only school nurse at this suburban Washington, D.C., elementary school, Bobbitt’s responsibilities extend beyond treating scraped knees and sniffles for the school’s 600 pupils. At her under-the-sea-themed clinic, she administers medications, teaches kids about health care, and conducts routine health screenings. As the school nurse, she also serves as a public health point person — tracking student vaccinations, linking parents to local health care resources, and communicating sometimes difficult messages to them, such as warnings about sexually transmitted diseases and signs of depression.

It’s a full plate, but Bobbitt considers herself lucky. In a previous school nursing job, she split her time between two buildings within the same school district — some years three. What hasn’t changed is that school nurses play a critical role in keeping students healthy and ready to learn, but it’s an often-unrecognized field for which schools struggle to attract and retain employees.

More than a third of schools nationwide don’t have a full-time nurse on-site, according to a 2021 survey by the National Association of School Nurses. The schools that don’t have a dedicated nurse either share one with other campuses, or don’t have one at all. Meanwhile, the nation is facing high rates of chronic illnesses among K-12 students, such as diabetes and asthma, along with an unprecedented mental health crisis among youth, and school nurses are at the front lines — often, alone.

School nurses’ roles were further complicated by covid-19. Since the pandemic took hold, they’ve been tasked with tracking cases and tracing exposures. An “extreme load of work was put on school nurses’ shoulders during the pandemic,” said Kate King, president of the NASN.

They got caught in the middle between anti-maskers and maskers and anti-vaccine and pro-vaccine parents, and were the point of contact whenever students had to quarantine. “School nurses are used to interacting with parents who are angry,” said King, but because of the pandemic “that anger just got to levels we had never seen before.”

In general, kids’ attendance and learning can suffer when students don’t have access to a school nurse. “You’re going to see more absences,” she said, citing a study from the Journal of School Nursing that found students with illnesses or injuries were sent home 18% of the time when evaluated by an unlicensed school employee while only 5% went home after being seen by a school nurse.

Teachers and administrators are shouldering some of the burden by learning how to handle injuries and illnesses themselves, but “it doesn’t take the place of having a school nurse who can respond immediately,” King said.

Though there is no federal law requiring schools to have nurses on staff, the Centers for Disease Control and Prevention recommends at least one full-time nurse for every 750 students enrolled — but most states are missing the mark by miles. School nurses in California have one of the heaviest workloads in the country with a student-to-school-nurse ratio of 2,410 students for every nurse, according to the Public Policy Institute of California.

According to research organization Child Trends, California, along with 34 other states and the District of Columbia, requires schools to employ school nurses. Of those, 12 set required nurse-to-student ratios. Seven states encourage schools to have nurses on staff. Eight states don’t have mandates on the books.

Still, schools were scrambling over the summer to hire nurses.

Jessica Sawko, director of education for Children Now, a California-based nonprofit organization, said schools struggle not only to retain nurses but also encourage aspiring nurses to consider working in schools. Districts can’t compete with the salaries and benefits hospitals offer. The national median salary for school nurses is nearly $55,000 a year, but a registered nurse could make nearly $30,000 more annually working at a hospital.

In some states, school nurses need special certification in addition to their nursing degrees.

The lack of school nurses is a byproduct of a larger issue: the nation’s overall nursing shortage. Health organizations in general — even those that offer healthy salaries — are facing difficulties hiring and keeping nurses. Around 40% of nurses who participated in a 2023 survey by McKinsey & Co. said they were considering leaving their position.

As a nurse for junior high students, King said she is keenly aware that school nurses sometimes serve as students’ only contact with a health care professional, especially at her campus.

World Language Middle School in Columbus, Ohio, where King works, has a diverse student body and takes in many students who are new to the country. “So that requires school nurses like myself to have a very broad range of knowledge of diseases and symptoms,” she said.

Robin Wallin, director of school health services for Alexandria City Public Schools, said that another layer of this issue is that school nursing “is an aging cohort.” The district has at least one school nurse in each of its 18 campuses — but this year it was a challenge to fill every spot. That’s partly because many school nurses are aging out, starting to retire, she said. “We need to start to replenish our cohorts.”

Bobbitt said the nursing students who shadow her almost never imagine themselves working in a school. “They want to work in the ER, they want to work in the hospital, they want to work in the NICU, or somewhere where they can have that adrenaline,” Bobbitt said. “This is a little different,” she said, adding that it is fast paced in its own way.

Robin Cogan is a clinical coordinator at Rutgers University’s School Nurse Specialty Program in New Jersey, and she said one of the biggest learning curves for nurses who opt to work in school settings is that they are “often an independent practitioner,” which involves juggling a lot of responsibilities.

Meanwhile, Bobbitt, working in her brightly colored clinic, stays focused on her daily mission: to address the students’ needs as quickly as possible. “We don’t want them to miss very much school or much class work,” Bobbit said. “That’s our goal, right?”

___

(KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2023 KFF Health News. Distributed by Tribune Content Agency, LLC.

Like so many people, I find myself devastated and depressed about the events in the Middle East that started with the invasion and atrocities brought about by Hamas in Israel. This has led to an escalation that seems to be having effects all over the entire region. As badly as I may feel, I realize how insignificant that is to the many people who have lost everything, including life.

I was struck by a video of the initial attack which showed a dog being shot and killed. I cannot imagine how many animals have been injured or killed in this war. Despite feeling helpless in all of this, can you direct me as to how I may send some money to help the animals that have been caught up in the conflict? I also wonder about animals that have lost legs through injury. Do prosthetics work as well on our four-legged friends as they now do on people? I.A.

Dear I.A.,

My column is about animals and asking the vet what I think. The one thing that does bond most of humanity is a love for animals and a desire to care for them even if we do not care well for one another. There is an abundance of well-intentioned animal welfare and care groups here and abroad and I would direct you to the internet to research those that you would like to support with your philanthropy. Most, if not all, are worthy of your generosity and all the animals deserve our love and help.

I chaired the American Veterinary Medical Foundation a few years ago and it supports these kinds of issues in making sure the financial aid actually reaches the animals. For example, they have already given over $500,000 to support animal care and welfare in Ukraine. They have not yet met to consider support to animals in Israel and Gaza as it is very recent. They would welcome any contribution. As for prosthetics, they have proven to be helpful in dogs and cats but not in larger species per se. The reason they are not seen often is the cost, which usually runs from $1,000-$1,500, and the simple fact that dogs and cats do very well on three legs when they lose one. Thanks for your concern for man and animals alike.

Dr. John de Jong owns and operates the Boston Mobile Veterinary Clinic. He can be reached at 781-899-9994.

Across the roughly 1,300 square miles of the White Earth Indian Reservation in northwest Minnesota, tribal members harvest wild rice in waters that have sustained them for generations. They’ve been working for decades to restore sturgeon, a culturally important fish, and they harvest minnows and leeches to supply bait for anglers across the country.

But the White Earth Band can no longer depend on the clean, abundant waters that make those activities possible. Droughts brought on by climate change and irrigation for agriculture have threatened the reservation’s rivers and lakes. Manure runoff from factory farms could poison the water that’s left.

Last year, the tribal government passed an ordinance to restrict withdrawals of water from the reservation and adjacent lands that share an aquifer. Under the statute, farms and other businesses seeking to withdraw more than 1 million gallons per year must obtain a permit from the tribe.

“White Earth firmly believes that if they did not take this action, the health and well-being of their members would be imminently harmed,” said Jamie Konopacky, the tribe’s environmental attorney. “Because of the growing concern about massive water appropriations, they passed this ordinance to give themselves independent permitting authority.”

The tribe’s action has not stopped the state from issuing water withdrawal permits on reservation land, a dispute currently being contested in tribal court. While the legal battle is with a farmer, not the state, Minnesota officials are examining the jurisdictional issues in play, and the tribe is urging them to recognize its sovereignty.

White Earth leaders are joining a growing effort by tribal nations to protect waters in Indian Country — asserting their sovereignty to target pollution that’s threatening wild rice in Minnesota, shellfish in Washington and salmon in California.

Some of the nations have passed tribal ordinances to regulate polluters on reservation lands. Others have sought authority under the federal Clean Water Act to establish their own water quality standards, giving them a legal mechanism to combat pollution coming from upstream.

“The tribe’s treaty right to harvest and consume shellfish and finfish is not a meaningful right if they’re not safe to eat,” said Hansi Hals, natural resources director for the Jamestown S’Klallam Tribe on Washington state’s Olympic Peninsula.

Last year, the U.S. Environmental Protection Agency gave the Jamestown S’Klallam Tribe approval to issue its own water quality standards under the Treatment as a State (TAS) program. That status essentially gives tribes the same regulatory power over certain water quality programs as states, once they have proven their jurisdiction on waters that run through or connect to reservation and tribal trust lands. The tribe plans to adopt standards under that authority sometime next year.

Meanwhile, the EPA is working to establish “baseline” water quality standards for tribes that have not yet adopted their own, ensuring that all Native lands receive Clean Water Act protections.

As tribes establish their own standards and permitting programs, some experts believe they could play a critical role in fighting pollution and ensuring that the resources they depend on for subsistence and cultural values are preserved.

But tribal leaders acknowledge that regulatory programs are expensive and time-consuming to establish, and some tribes can’t afford them. And many tribes that seek to assert their sovereignty risk costly legal battles with industry-friendly states, which are reluctant to give up their own permitting authority. Meanwhile, a new presidential administration could appoint EPA leaders hostile to tribal interests, undoing recent efforts.

Asserting sovereignty

In 1987, Congress passed a provision allowing tribes to set their own water quality standards in the same manner as states, recognizing that Native reservations had been left out of the powers delegated to states under the Clean Water Act.

“Clean Water Act standards don’t exist in Indian Country,” said Jim Grijalva, a professor at the University of North Dakota School of Law and a longtime advocate for tribal water programs. “The problem is a racist assumption that tribes shouldn’t have the governmental right to do anything.”

While the Treatment as a State program sought to correct that, its lengthy and complicated approval process has made it challenging for tribes to pursue that option. Only 84 of the nation’s 574 federally recognized tribes are recognized under the TAS program. And only 326 tribes have reservation land, further limiting the nations that can apply.

But momentum is growing. A 2016 EPA rule streamlined the application process, and 22 tribes — more than a quarter of those approved — have earned TAS status since 2020.

“The learning curve has been slow at times, but tribes are realizing the ability to use their sovereign authority under the Clean Water Act as part of their arsenal for protection,” said Ken Norton, chair of the National Tribal Water Council, a tribal advocacy group.

Norton also directs the Tribal Environmental Protection Agency for the Hoopa Valley Tribe in California, which was among the first tribes approved for TAS status in 1996. The tribe’s regulatory authority on the Klamath River enabled it to negotiate the extension of a state-run salmon hatchery that was slated to close under a dam-removal plan.

“Our voice at the table, not as a stakeholder but as a regulatory entity, was strengthened because we had these federally approved water quality standards,” Norton said.

Grijalva, the law professor, noted that tribal standards can take into account factors such as the dietary habits of Native people who harvest food from the landscape.

“Tribes have inherent rights to make value judgments that are different than their neighbors,” he said. “If you set a dioxin standard, mercury standard or selenium standard based on risk to the average white guy, you’re not accounting for the tenfold increase in exposure to an Indigenous person.”

In Michigan’s Upper Peninsula, members of the Keweenaw Bay Indian Community fish for lake trout, brook trout and walleye on the reservation’s lakes and rivers. The tribe earned TAS status in 2020 and is working to issue water quality standards by the end of the year.

“We’re a fishing community, so the protection of water quality is of utmost importance,” said Dione Price, the tribe’s environmental specialist and environmental health section lead. “This really does give the tribe a seat at the table in water protection.”

The Karuk Tribe in California also received TAS approval in 2020. Grant Johnson, the tribe’s water quality program manager, said that step came after years of securing funding, hiring staff and building proficiency to ensure it could craft detailed regulations, monitor its waters and enforce its standards.

The Keweenaw Bay and Karuk tribes are among the 37 nations that have received TAS authority but are still working to issue water quality standards or waiting on EPA approval of those thresholds. While many are well underway, the staffing levels and expertise required to run a water quality program remain a major hurdle for some tribes.

“It’s great to take advantage of the politically open moment, but many tribes don’t have the resources and support to make their own standards,” said Sibyl Diver, a lecturer at Stanford University’s Earth Systems Program who has published research on TAS.

Diver also noted that many reservations are within states that are hostile to tribal sovereignty and environmental regulations. Such tribes are likely to face lawsuits from state governments and conservative groups, and may not have the resources for expensive legal battles.

New authorities

While many tribes have set standards that are more stringent than their neighbors, experts say that even thresholds that only match federal minimums give tribes a major tool. Just by holding that authority, tribes can participate in permitting decisions on upstream waters.

For the Chehalis Tribe in Washington state, water quality standards allow it to protect the salmon that swim in the Chehalis River.

“The tribe having its own standards means that if there’s a project or an issue that’s happening upstream, the tribe now has a say in what’s happening rather than waiting for the federal government to act on it,” said Jeff Warnke, the tribe’s director of government and public relations.

While more tribes work toward that regulatory power, others have started by setting tribal ordinances for their own reservations. Some, like the White Earth Band in Minnesota, see the establishment of an internal program as a precursor for pursuing TAS authority. Norton, with the National Tribal Water Council, said more tribal nations have issued such regulations in recent years, although specific figures are hard to come by.

Meanwhile, more tribes may seek to create or expand water ordinances after the U.S. Supreme Court’s ruling earlier this year to remove millions of acres of wetlands from Clean Water Act jurisdiction, leaving their protection up to states and tribes.

As more tribes work to set up their own programs, the EPA has proposed a “baseline” water quality standard for tribal lands that are not yet covered under TAS. If the rule moves forward, it would provide protection for 76,000 miles of rivers and streams and 1.9 million acres of lakes and reservoirs that currently lack standards, the agency said.

“Some states like the fact that there’s no rules in Indian Country,” said Grijalva, the law professor. “But if a significant part of the country is not protected because it doesn’t have the most basic water quality standards, EPA isn’t doing its job.”

The federal agency did not make a spokesperson available for comment.

Stateline is part of States Newsroom, a national nonprofit news organization focused on state policy.

©2023 States Newsroom. Visit at stateline.org. Distributed by Tribune Content Agency, LLC.

Dr. Stacy Fischer, co-leader of cancer prevention and control at the University of Colorado Cancer Center, said several small studies have found that psychedelic drugs may help patients who are experiencing demoralization or despair because of their impending mortality. The study CU is part of will have a larger and more diverse group of people, which hopefully will produce more conclusive evidence of whether there’s a benefit, she said.

“There’s so much science that needs to be done in this space,” Fischer said.

Psilocybin, the active ingredient in magic mushrooms, is still a Schedule 1 drug, meaning the U.S. Drug Enforcement Administration determined it has high potential for misuse and no accepted medical use.

But the U.S. Food and Drug Administration also released guidance earlier this year for trials involving psilocybin and some other psychedelics, and designated it as a “breakthrough” therapy for some mental health conditions, which would ease the path to getting treatments approved.

If the data shows that psilocybin is helpful for at least some people dealing with existential despair, that information could be useful to the FDA, even though no drug companies are asking for the agency’s approval to market it for that condition, Fischer said.

Generally, doctors can prescribe FDA-approved drugs “off label” for any condition where they might be helpful, but the agency also has the option to limit how a drug can be used if it is concerned about risk, said Dr. Brian Anderson, a psychiatrist at University of California San Francisco who is also studying psilocybin.

That means that it’s important to have robust data justifying that it works for people nearing the end of life if patients are going to have that option, he said.

All of the participants in the CU study will receive six hours of therapy before taking the drug and eight hours afterward, spread across multiple sessions. Half will get a dose of psilocybin and the other half will get niacin, a vitamin that causes flushing and some physical symptoms meant to mimic the effects of the psychedelic.

“I think even those receiving the placebo are getting some benefit” from the therapy, Fischer said.

Jim Grisgby, a professor at CU’s Denver and Anschutz campuses and one of the participating therapists, said much of the initial therapy is about preparing for the experience, since people are more likely to benefit if they’re ready to release control and go where the drugs take them. Afterward, they process anything from the experience, as well as patients’ feelings about their cancer and the grief that comes with it, he said.

“Everybody’s got their own sense of loss,” Grisgby said.

Research is still trying to determine how important the drug itself is, versus the therapy to integrate the experience into patients’ lives, Grigsby said. It’s likely both matter, since people who took psychedelics at Phish and Grateful Dead concerts didn’t usually come away changed, he said.

“You’d have a lot more people having these profound experiences” if drugs were all that was needed, he said.

One weakness in psychedelic research is that most people figure out if they got the active drug or the placebo, Fischer said. They’ll attempt to account for that by asking people about their expectations beforehand, to see if a significant amount of any benefit from psilocybin is because people believe it will help them, she said.

The study is open to people who have stage 3 or 4 cancer and significant anxiety or depression, but no other major medical problems. The participants will have the option to receive psilocybin under a different protocol after they complete the six-month follow-up process in the initial study, Fischer said.

The study leaders also hope to answer whether the experience under psilocybin has to be especially spiritual or mystical to produce a benefit, Fischer said. They think a more mystical experience will prove helpful, and are encouraging participants to bring items that are significant to them to help put them in the right mindset, she said.

Anderson, who is working on a different study to see whether psilocybin reduces demoralization in people with a life expectancy of less than two years, said most research on psilocybin has involved relatively young, physically healthy people, so there’s a need to study how it would affect those who are older and more medically complex.

And of course, there’s no good information about what will happen if people take the drugs in “healing centers” like Colorado is creating, since the conditions may not be as carefully controlled, he said.

“It’s a bit of comparing apples and oranges,” Anderson said.

Sign up for our weekly newsletter to get health news sent straight to your inbox.

People who eat two servings of red meat a week may have a higher risk of developing type 2 diabetes compared to people who eat fewer servings, and the risk increases with greater consumption, according to a new study from Harvard T.H. Chan School of Public Health.

The Harvard researchers also found that replacing red meat with healthy plant-based protein sources — such as nuts and legumes — or modest amounts of dairy was tied with a lower risk of type 2 diabetes.

“Our findings strongly support dietary guidelines that recommend limiting the consumption of red meat, and this applies to both processed and unprocessed red meat,” said first author Xiao Gu, a postdoctoral research fellow in the Department of Nutrition.

Type 2 diabetes is a major risk factor for cardiovascular and kidney disease, cancer, and dementia.

While previous studies have found a link between red meat consumption and type 2 diabetes risk, this study now adds a greater level of certainty about the association.

The researchers analyzed health data from 216,695 participants from the Nurses’ Health Study (NHS), NHS II, and Health Professionals Follow-up Study. The participants were asked about their diet in food frequency questionnaires every two to four years, for up to 36 years. During this time, more than 22,000 participants developed type 2 diabetes.

The scientists found that consumption of red meat — including processed and unprocessed red meat — was strongly linked with increased risk of type 2 diabetes.

Participants who ate the most red meat had a 62% higher risk of developing type 2 diabetes compared to those who ate the least.

Every additional daily serving of processed red meat was linked with a 46% greater risk of developing type 2 diabetes, and every additional daily serving of unprocessed red meat was associated with a 24% greater risk.

The researchers also estimated the potential effects of substituting one daily serving of red meat for another protein source. They found that substituting a serving of nuts and legumes was linked with a 30% lower risk of type 2 diabetes, and substituting a serving of dairy products was associated with a 22% lower risk.

“Given our findings and previous work by others, a limit of about one serving per week of red meat would be reasonable for people wishing to optimize their health and wellbeing,” said senior author Walter Willett, a professor of epidemiology and nutrition.

The researchers also said swapping red meat for healthy plant protein sources would help reduce greenhouse gas emissions and climate change, and provide other environmental benefits.

The red meat and type 2 diabetes study was published on Thursday in The American Journal of Clinical Nutrition.