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Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.

On Alcohol Abuse: Seeing a Double Standard

I have done quite a bit of research on alcohol-related deaths and I track reports from the Centers for Disease Control and Prevention. Now, my No. 1 question is: Why are the government and the media not holding the alcohol industry accountable for the deaths that its products cause?! The tobacco industry was held accountable for its products and now pharmacies are being held accountable for the opioid crisis. It seems to me that there’s a double standard that’s been ongoing for years, especially since alcohol-related deaths far outnumber opioid deaths. Can anyone working for the government or the media explain why I see more articles about the possible dangers of opioids or marijuana (“Legal Pot Is More Potent Than Ever — And Still Largely Unregulated,” May 9) instead of alcohol-related deaths?

— Stephen Hubbard, Independence, Missouri

This kind of mainstream #cannabis coverage is ignorant and reminiscent of the 1980's. It oversimplifies an incredibly complex topic, demonizes #marijuana, and outright ignores health benefits for millions. I'd expect more from USA Today. @DavidHilzenrath https://t.co/AlOkAlM5ac

— John Schroyer (@Johnschroyer) May 8, 2023

— John Schroyer, Denver

Veterans Deserve Choice in How They Claim VA Disability Benefits

While I appreciate KFF Health News’ interest in the ongoing debate about private sector services helping veterans navigate the Department of Veterans Affairs’ disability claims process (“Some Private Companies Charge Hefty Fees to Help Veterans With Disability Claims,” April 28), your coverage left the impression that private benefit guides generally overcharge for their services and provide little value to veterans. That is an unfair characterization, and your readers deserve additional context.

Honorable companies like Veteran Benefits Guide, where I work, are providing a needed service to veterans, helping guide them through the complex claims process and ensure they receive the full benefits they earned from their service. As a company founded by a veteran and staffed by many veterans and family of veterans, we are proud that our clients receive an average increase to annual benefits of $13,200, benefits they would not receive without our help.

Veterans service organizations (VSOs) are intended to help free of charge, but too often they are understaffed and inadequately trained. In congressional testimony, the National Association of County Veterans Service Officers, which represents county VSOs nationwide, acknowledged that it does not have enough representatives nor funding to meet veterans’ demand for assistance.

Your article described $2,800 as a “hefty” fee being charged by one private benefit guide and quoted the National Organization of Veterans’ Advocates, a group representing accredited attorneys and agents, calling for tighter regulation of the industry, but then failed to mention that those attorneys and agents often charge veterans significantly more. In fact, accredited attorneys charge between 20% and 33% of a veteran’s backpay, which can exceed $50,000 on complicated cases. In nearly every scenario, an attorney will charge multiples more than a private benefit guide and take years longer to achieve the same result.

At Veteran Benefits Guide, our focus is on ensuring Veterans submit fully developed, accurate claims to the VA, which helps get the correct rating for the Veteran the first time, avoids the need for costly appeals and speeds up the final benefits decision. Attorneys, on the other hand, are only paid to assist Veterans during an appeals process. And they are incentivized to drag out appeals, since they are paid a percentage of the Veteran’s backpay. The longer an appeal takes, the more the attorney is paid.

Veteran Benefits Guide and other honorable companies have strongly supported efforts to establish guardrails and crack down on bad actors, such as the recently introduced PLUS for Veterans Act, which would impose criminal penalties on those seeking to take advantage of veterans, establish safeguards to prevent conflicts of interest, and institute caps to prevent unreasonable fees — while still preserving the right of veterans to seek assistance from the private sector. It would have been helpful context for your readers to know that such reasonable legislation has been introduced and is being considered in Congress right now.

— Michael Licari, chief legal officer of Veteran Benefits Guide, Las Vegas

This is unacceptable #SDoHwarriors!Veterans and members of the military already face a higher than expected incidence and prevalence of #SDoH, now this???RISE @tdahlborg @pauldvet Jenn Kerfoot @JoSchneier Toni Tashiro #m…https://t.co/ffbcLONGJf https://t.co/EyFCg3xByU

— Ellen Fink-Samnick (@epflcswccm) April 28, 2023

— Ellen Fink-Samnick, Burke, Virginia

Bracing for a Wave of Denials

Patients and physicians alike are shocked by the increasing number of absurd and sometimes dangerous barriers insurance companies put in place (“Denials of Health Insurance Claims Are Rising — And Getting Weirder,” May 26). Not only are coverage denials happening after the fact, but care is also disrupted before patients have a chance to get the drugs and services they need.

Through a process called prior authorization, insurance companies force doctors to submit requests for care, and the insurance company representatives, who are not necessarily specialists or even medical doctors, have the power to determine if care is necessary or not. At best, it delays care and can force patients to wait; at worst, medical care can be outright denied.

One egregious example is UnitedHealthcare’s unprecedented prior authorization policy for most endoscopies and colonoscopies, starting on June 1. Even if you have blood in your stool or suffer severe gastrointestinal pain, you will need to get preapproval before you can receive a procedure to diagnose or treat your condition. With colorectal cancer being the second-leading cause of cancer deaths in the U.S. and Crohn’s disease and colitis affecting more than a million Americans, time is of the essence to catch problems quickly. I fear that UnitedHealthcare’s prior authorization policy will deter Americans from getting timely care and exacerbate existing disparities.

The gastrointestinal community calls on UnitedHealthcare to honor its recent promise to slash prior authorization — and rescind this absurd policy before patients suffer real harm.

— Barbara Jung, president-elect of the American Gastroenterological Association, Seattle

Denials of #health insurance claims are more & more common, boosting company profits but often defying medical standards of care…and sheer logic. https://t.co/0oA6ZuPFan

— Lindsay Resnick (@ResnickLR) May 26, 2023

— Lindsay Resnick, Chicago

Aging Takes a Village

I applaud Judith Graham for her article “How to Grow Your Social Network as You Age” (April 28), which also published April 22 in The Washington Post. It aptly highlights the importance of social connections for older adults and emphasizes that “it’s never too late to develop meaningful relationships.” I could not agree more.

We are increasingly learning about the consequences of isolation and loneliness on the emotional, physical, and cognitive health of older adults.

In the past decade, an antidote to social isolation has emerged nationwide through the “Villages Movement” whereby local “communities” of neighbors help one another to successfully age in place.

Most Villages are volunteer organizations offering a range of social activities and basic services. There are approximately 350 Villages nationwide and 74 in the Washington, D.C., metro area. While each Village operates differently, they share the mission to improve the quality of life for seniors and reduce isolation.

My work with Villages, both nationally and locally, has allowed me to witness firsthand how Villages are improving the lives of older adults. Whether they attend a Village seminar, luncheon, art tour, or bridge tournament, they are building those critical connections and having fun!

During the pandemic lockdown, our Potomac Community Village helped to reduce isolation by offering frequent Zoom programs as well as friendly phone calls and check-ins with members.

Villages are a great solution. I’d encourage readers to consider joining a Village where they can find new friends and a renewed sense of community. For more information, see vtvnetwork.org.

— Edgar E. Rivas (he, him, él), Potomac Community Village Board of Directors vice president, Village to Village Network, Potomac, Maryland

Worthwhile story, but this shot of people playing "yard petanque" Disrespects My #bocce Bing. https://t.co/XSSzrlFGFj pic.twitter.com/Ql4VpBAN9F

— Alex Heard (@alexheard) April 23, 2023

— Alex Heard, Santa Fe, New Mexico

Remote Work Alone Won’t Solve Caregivers’ Challenges

I am a health care professional and have relied upon the work of KFF’s health policy research and KFF Health News over the years. Reading a recent article you produced, “Remote Work: An Underestimated Benefit for Family Caregivers” (May 19) by Joanne Kenen, I would strongly suggest a deeper view. Below are specific points I’d love to help bring to the attention of your readership, given my extensive work in the space of caregiving, health, and the working caregiver. I am a registered nurse, family caregiver, caregiving expert, and co-founder of two organizations that have been supporting family caregivers for the past eight years.

Remote work is helpful, yes. But it’s only part of the answer. Without the adequate tools, resources, and support to work and carry the load of caring at home, working caregivers will still experience stress, burnout, hits to their productivity, loneliness, and the list goes on.

We need to take a more wholistic view and address the underlying factors of stress, and the myriad of challenges that plague every caregiver.

For example, communication challenges do not go away when working from home — not unless that working caregiver has the technology and resources to connect all the disparate communications in order to better coordinate among other family members involved in caring and with the providers involved in managing their care. Post-it notes, texts, emails, and phone calls are no way to communicate and are simply ineffective.

Having remote patient monitoring devices at home is good, but if they are not connected to a platform to better coordinate what’s happening, adjust care plans, and engage providers of care more effectively with the family caregiver at home managing the care, then work productivity, stress, and the employee’s well-being still takes a big hit, regardless of working remotely or not.

We need to go several layers deeper. Remote work is a good benefit, but it cannot stop there. Without the adequate support, technology, and tools to engage and better coordinate the mess, many working caregivers slog through every day, and the overall impacts will be far less than desired.

— Deb Kelsey-Davis, Chicago

The overlooked benefit of remote work for #caregivers: Employers and co-workers understand the need to take time off to care for a baby. But there’s a lot less understanding about time to care for anyone else. by @JoanneKenen @khnews https://t.co/Q30mLggH55 via @usatoday

— Catherine Arnst (@cathyarnst) May 17, 2023

— Catherine Arnst, New York City

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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TAMPA, Fla. — When a hemp dispensary in this Florida city started to stock edibles with certain mushroom extracts last year, state regulators quickly ordered it to stop selling the items.

The shop had been advertising fruit-flavored gummies and other products containing tiny doses of mood-altering chemicals from the mushroom Amanita muscaria. The red-capped, white-spotted fungus — rooted in popular culture through the Super Mario Nintendo game franchise, “The Smurfs,” and “Alice’s Adventures in Wonderland” — is legal for consumers to possess and eat in every state except Louisiana, according to a review of state laws.

Products with the mushroom’s extracts have cropped up at stores and online retailers from Florida to Minnesota and Nebraska to Pennsylvania. Businesses advertise a milder high compared with psilocybin, the Schedule 1 psychedelic that remains illegal at the national level, to people hoping to ease anxiety, depression, or joint pain.

But federal officials and fungi experts have urged caution, and Florida regulators have clamped down on sales in at least five counties. Some uses of the mushroom and its chemicals have led to serious side effects, including delirium with sleepiness and coma, according to Courtney Rhodes, an FDA spokesperson.

No human clinical trials have evaluated the products’ safety and effectiveness, said Heather Hallen-Adams, a faculty member at the University of Nebraska-Lincoln, who researches fungi in food.

Chillum, a hemp dispensary in the Ybor City neighborhood, stopped selling the edibles in December after regulators from the Florida Department of Agriculture and Consumer Services ordered it to do so, calling A. muscaria a dangerous ingredient. The shop returned $30,000 worth of merchandise to Psilo Mart, a Las Vegas-area supplier that says it imports the mushroom from Lithuania. The agriculture department, which regulates shops that sell products like hemp vapes, then lifted its restrictions on the dispensary.

Drew Gennuso, president of Psilo Mart, said he hasn’t heard of any “major issues” with the edibles. Chillum’s owner, Carlos Hermida, said he believes the products are safe.

“It’s so mild,” he said of the fungus’s effects. “It’s not anything where you’re going to smell the color purple.”

Hermida recently began selling the products again for between $20 and $55 — but, attempting to avoid another state order, he said Chillum added labels warning they are solely for “educational” or “spiritual” purposes and not human consumption.

Federal officials haven’t approved the fungus and its chemicals to be sold as food additives or to treat medical conditions.

The Tampa case highlights the gaps in oversight of this nascent national market despite concerns from federal officials.

“The companies are moving faster than the research,” said John Michelotti, who heads the medicinal mushrooms committee of the North American Mycological Association and founded Catskill Fungi, an upstate New York business that sells mushroom extracts.

“It’s the wild West.”

The crackdown at Chillum began in October. The Florida agriculture department collected samples of products for lab testing. Returning in December, the agency said a Psilo Mart hemp joint with A. muscaria powder had elevated levels of toxic heavy metals, department records show.

Hermida threw out his inventory of the mushroom joints, he said, and regulators ordered him to stop selling the other fungus products. They cited a state law that says food is “adulterated” if it “bears or contains any poisonous or deleterious substance which may render it injurious to health.”

The gummies with the extracts elicit a feeling of “being high and drunk,” Hermida said, while the capsules cause a “tingly body sensation” and throw off depth perception.

The mushroom is poisonous, though likely not fatal, and can be detoxified in boiling water. Consuming the raw fungus isn’t the same as using low doses of its chemicals, Hermida maintained.

The Florida Poison Information Center in Tampa gets one report a week, on average, of a hallucinogenic mushroom poisoning, but many callers don’t explain what kind they ate, and doctors don’t have a quick way to verify, said Alexandra Funk, its managing director. She said A. muscaria products should be kept away from children.

In the Tampa Bay area, medical examiners haven’t recorded any recent deaths from the mushroom. Johns Hopkins All Children’s Hospital in St. Petersburg and local AdventHealth emergency rooms haven’t seen poisonings, according to spokespeople. But there appears to be a lack of routine testing for the fungus.

The edibles sold at Chillum appealed to Antwan Towner, a 40-year-old Ybor City magician who said he struggles with anxiety. He eats half a gummy when having a bad day, he said, and it produces euphoria that lasts about four hours, then peace of mind for a week. He said he hasn’t experienced a negative reaction or hallucinations.

“It was never about getting high,” he said. “It was just about trying something that may be effective.”

There’s a “lot of anecdotal evidence” that low doses of the mushroom may be useful therapeutically, said Hallen-Adams, who chairs the toxicology committee of the North American Mycological Association.

But more data is needed to prove if it helps those with various medical conditions or if it’s simply a placebo, she said.

Last year, a Canadian company said an independent group of scientists found that its A. muscaria extract was “generally recognized as safe.”

The Toronto company, Psyched Wellness, conducted preclinical studies on its “Calm” extract, a sleep aid, said CEO Jeffrey Stevens.

Other businesses, Stevens said, haven’t invested in such research. “We have so many cowboys right now who are just saying, ‘Oh, this is a legal psychedelic mushroom, let’s just put product into the market.’”

Since early February, Florida regulators have cited five businesses in Daytona Beach, Largo, Plant City, Tallahassee, and Tamarac for selling merchandise containing A. muscaria, according to state agriculture department records. Because federal officials haven’t approved the mushroom to be used in food, the Florida agency orders businesses to stop selling these products when its inspectors find them, Aaron Keller, a spokesperson for the state agriculture department, wrote in an email.

In this emerging market with many unknowns, Hallen-Adams urged consumers to “be careful if this is something you’re going to experiment with.”

Under Chillum’s new labeling, consuming the edibles it sells is an “abuse of product,” Hermida said.

“If you want to study it, or if you want to pray to it, that’s fine with me.”

This article was produced in partnership with the Tampa Bay Times.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Join us on June 22, 2023, at 2 p.m. EDT for our next foreign and comparative law webinar titled “Medieval European Legal Manuscripts And What They Are Telling Us.”

Please register here. 

During this webinar, Codicologist Dr. Ilya Dines will discuss the medieval manuscripts that are in the Law Library of Congress’s possession. During the presentation, Ilya will introduce the audience to a discussion and description of these unique books and their commentaries. He will highlight the legal system they represent, provide insights into their authors, and explore the afterlife of these manuscripts. The main focus of this webinar will be to demonstrate the reasons why manuscripts continue to hold great importance, even though many of the treatises have been published in modern editions.

Dr. Ilya Dines is a codicologist in the Law Library of Congress Collection Services Division. In this capacity, he describes the incunables collection of more than 300 volumes dealing with Roman, Canon, Feudal, and French customary laws in the Law Library’s Rare Book Collection. He has authored two books and approximately 20 academic articles. Ilya was a Library of Congress Kluge Fellow in 2015-2016. He is the head paleographer/codicologist at the Lazarus Project at the University of Rochester and was the director of the medieval and renaissance catalog project at The National Library of Israel. He holds a Ph.D. from Hebrew University of Jerusalem in medieval history.

Subscribe to In Custodia Legis – it’s free! – to receive interesting posts drawn from the Law Library of Congress’s vast collections and our staff’s expertise in U.S., foreign, and international law.

Cardiovascular disease — the No. 1 cause of death among people 65 and older — is poised to become more prevalent in the years ahead, disproportionately affecting Black and Hispanic communities and exacting an enormous toll on the health and quality of life of older Americans.

The estimates are sobering: By 2060, the prevalence of ischemic heart disease (a condition caused by blocked arteries and also known as coronary artery disease) is projected to rise 31% compared with 2025; heart failure will increase 33%; heart attacks will grow by 30%; and strokes will increase by 34%, according to a team of researchers from Harvard and other institutions. The greatest increase will come between 2025 and 2030, they predicted.

The dramatic expansion of the U.S. aging population (cardiovascular disease is far more common in older adults than in younger people) and rising numbers of people with conditions that put them at risk of heart disease and stroke — high blood pressure, diabetes, and obesity foremost among them — are expected to contribute to this alarming scenario.

Because the risk factors are more common among Black and Hispanic populations, cardiovascular illness and death will become even more common for these groups, the researchers predicted. (Hispanic people can be of any race or combination of races.)

“Disparities in the burden of cardiovascular disease are only going to be exacerbated” unless targeted efforts are made to strengthen health education, expand prevention, and improve access to effective therapies, wrote the authors of an accompanying editorial, from Stony Brook University in New York and Baylor University Medical Center in Texas.

“Whatever focus we’ve had before on managing [cardiovascular] disease risk in Black and Hispanic Americans, we need to redouble our efforts,” said Clyde Yancy, chief of cardiology and vice dean for diversity and inclusion at Northwestern University’s Feinberg School of Medicine in Chicago, who was not involved with the research.

Of course, medical advances, public health policies, and other developments could alter the outlook for cardiovascular disease over the next several decades.

More than 80% of cardiovascular deaths occur among adults 65 or older. For about a dozen years, the total number of cardiovascular deaths in this age group has steadily ticked upward, as the ranks of older adults have expanded and previous progress in curbing fatalities from heart disease and strokes has been undermined by Americans’ expanding waistlines, poor diets, and physical inactivity.

Among people 65 and older, cardiovascular deaths plunged 22% between 1999 and 2010, according to data from the National Heart, Lung, and Blood Institute — a testament to new medical and surgical therapies and treatments and a sharp decline in smoking, among other public health initiatives. Then between 2011 and 2019, deaths climbed 13%.

The covid-19 pandemic has also added to the death toll, with coronavirus infections causing serious complications such as blood clots and millions of seniors avoiding seeking medical care out of fear of becoming infected. Most affected have been low-income individuals, and older non-Hispanic Black and Hispanic people, who have died from the virus at disproportionately higher rates than non-Hispanic white people.

“The pandemic laid bare ongoing health inequities,” and that has fueled a new wave of research into disparities across various medical conditions and their causes, said Nakela Cook, a cardiologist and executive director of the Patient-Centered Outcomes Research Institute, an independent organization authorized by Congress.

One of the most detailed examinations yet, published in JAMA Cardiology in March, examined mortality rates in Hispanic, non-Hispanic Black, and non-Hispanic white populations from 1990 to 2019 in all 50 states and the District of Columbia. It showed that Black men remain at the highest risk of dying from cardiovascular disease, especially in Southern states along the Mississippi River and in the northern Midwest. (The age-adjusted mortality rate from cardiovascular disease for Black men in 2019 was 245 per 100,000, compared with 191 per 100,000 for white men and 135 per 100,000 for Hispanic men. Results for women within each demographic were lower.)

Progress stemming deaths from cardiovascular disease in Black men slowed considerably between 2010 and 2019. Across the country, cardiovascular deaths for that group dropped 13%, far less than the 28% decline from 2000 to 2010 and 19% decline from 1990 to 2000. In the regions where Black men were most at risk, the picture was even worse: In Mississippi, for instance, deaths of Black men fell only 1% from 2010 to 2019, while in Michigan they dropped 4%. In the District of Columbia, they actually rose, by nearly 5%.

While individual lifestyles are partly responsible for the unequal burden of cardiovascular disease, the American Heart Association’s 2017 scientific statement on the cardiovascular health of African Americans notes that “perceived racial discrimination” and related stress are associated with hypertension, obesity, persistent inflammation, and other clinical processes that raise the risk of cardiovascular disease.

Though Black people are deeply affected, so are other racial and ethnic minorities who experience adversity in their day-to-day lives, several experts noted. However, recent studies of cardiovascular deaths don’t feature some of these groups, including Asian Americans and Native Americans.

What are the implications for the future? Noting significant variations in cardiovascular health outcomes by geographic location, Alain Bertoni, an internist and professor of epidemiology and prevention at Wake Forest University School of Medicine, said, “We may need different solutions in different parts of the country.”

Gregory Roth, a co-author of the JAMA Cardiology paper and an associate professor of cardiology at the University of Washington School of Medicine, called for a renewed effort to educate people in at-risk communities about “modifiable risk factors” — high blood pressure, high cholesterol, obesity, diabetes, smoking, inadequate physical activity, unhealthy diet, and insufficient sleep. The American Heart Association has suggestions on its website for promoting cardiovascular health in each of these areas.

Michelle Albert, a cardiologist and the current president of the American Heart Association, said more attention needs to be paid in medical education to “social determinants of health” — including income, education, housing, neighborhood environments, and community characteristics — so the health care workforce is better prepared to address unmet health needs in vulnerable populations.

Natalie Bello, a cardiologist and the director of hypertension research at the Smidt Heart Institute at Cedars-Sinai Medical Center in Los Angeles, said, “We really need to be going into vulnerable communities and reaching people where they’re at to increase their knowledge of risk factors and how to reduce them.” This could mean deploying community health workers more broadly or expanding innovative programs like ones that bring pharmacists into Black-owned barbershops to educate Black men about high blood pressure, she suggested.

“Now, more than ever, we have the medical therapies and technologies in place to treat cardiovascular conditions,” said Rishi Wadhera, a cardiologist and section head of health policy and equity research at the Smith Center for Outcomes Research in Cardiology at Beth Israel Deaconess Medical Center in Boston. What’s needed, he said, are more vigorous efforts to ensure all older patients, including those from disadvantaged communities, are connected with primary care physicians and receive appropriate screening and treatment for cardiovascular risk factors, and high-quality, evidence-based care in the event of heart failure, a heart attack, or a stroke.

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 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Delores Lowery remembers vividly the day in 2016 when she was working in a weaving plant near her home in Bennettsville, South Carolina, and the world around her seemed to go dim.

She turned to her co-workers. “And I asked, I said, ‘Why y’all got it so dark in here? They said, ‘Delores, it’s not dark in here.’ I said, ‘Yes, it is. It’s so dark in here.'”

She landed in the hospital. Her A1C level, which shows the average percentage of sugar in someone’s blood over the past few months, was 14%.

A reading of 6.5% or higher indicates diabetes.

Lowery’s home in Marlboro County is at the heart of what the Centers for Disease Control and Prevention calls the “Diabetes Belt” — 644 mostly Southern counties where rates of the disease are high.

And of those counties, NPR found that more than half have high levels of medical debt. That means at least 1 in 5 people have medical debt in collections.

That’s much higher than the national rate, which is 13%, according to the Urban Institute, a social-policy nonprofit. In Marlboro County, 37% of people have medical debt in collections.

NPR measured the overlap of Diabetes Belt counties and high medical debt counties by merging the institute’s medical debt database with the CDC’s list of Diabetes Belt counties.

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Urban Institute economist Breno Braga said medical debt, like diabetes, is concentrated in the South.

“The single most important predictor of a county’s medical debt is the prevalence of chronic conditions. So it’s basically the share of the population that has disease, such as diabetes, hypertension, and other types,” he said.

That finding is from an analysis conducted by the Urban Institute for KFF Health News and NPR as part of an investigation into medical debt published last year. The investigation found, among other things, that 100 million people in the U.S. have some kind of health care debt, a burden that can be devastating for people with chronic illnesses such as diabetes and cancer.

Lowery has been dealing with both the medical and financial challenges of Type 2 diabetes, and much more. The years since her diagnosis have been extremely difficult, with one life-changing event having overwhelming health and financial consequences.

In 2017, she came home one day to find her daughter, Ella Shantrica, on the floor, stabbed to death. The body of her granddaughter, 8-year-old Iyana, was found 12 days later in a nearby creek. In February, a man was found guilty of the killings and sentenced to life in prison.

In an interview in the front room of that tidy single-family home in Bennettsville, Lowery said it took time before she could bring herself to return to the house.

“Every day, 24 hours a day, that incident is in my head,” she said. “It will never, ever go away.”

She credits her church’s pastor with helping her go back to the house, which she shares with grandson Tyreon, a teenager on the autism spectrum. With her daughter gone, Lowery said, she is Tyreon’s sole caregiver.

Paying for diabetes care along with bills for food and housing has been a constant financial strain that eventually put her in debt.

“The cost of living was so extremely high in trying to raise my grandson that I just got behind,” she said.

Many Americans are facing similar hardships. In addition to NPR’s findings, research from the American Diabetes Association said people with the disease have more than twice the medical expenses annually as those without the disease.

“Because diabetes is a chronic illness, there are always six-month appointments,” said Donna Dees, who lives in Georgia and was diagnosed with Type 2 diabetes in 2008. “Every six months, go to the doctor, you’ve got lab work. So that’s how the costs keep building up and building up.”

Dees built up thousands of dollars in medical debt and got help from RIP Medical Debt, a nonprofit group that says it has wiped out more than $8 billion in medical debt.

Lowery will tell you that she gets high-quality and compassionate health care from a local provider. But the financial challenge of living with diabetes has put her health into decline.

A drug that once helped her, Ozempic, is now too costly for her. She said the medicine had been helping bring her diabetes under control. She was getting it delivered to her home, but she didn’t meet her copays, and the bills piled up as unpaid debt. Soon, the deliveries stopped and Lowery tried to renew the prescription at the local pharmacy.

“I went to get it and the woman told me, ‘I don’t think you’re going to be able to afford this.’ I said, ‘Why not?’ She said, ‘Because it’s seven hundred and some dollars.'”

Worse, as the drug’s profile skyrocketed in recent months as a treatment for weight loss among celebrities, demand increased and a shortage developed.

Lowery said this year that she hadn’t been able to get Ozempic for several months and that her diabetes was getting worse. Her insurance company has been of no help.

“Nobody is willing to work with me with Ozempic. I don’t know what to do,” Lowery said. “They won’t send me the medicine.”

She and her provider even talked about getting physician samples, but given Ozempic’s growing popularity, that didn’t work.

A Changing Economy

In Lowery’s hometown, others are struggling too.

More than 1 in 3 residents of the surrounding county have medical debt in collections, and 1 in 3 live in poverty.

It wasn’t always this way, locals told NPR. The area once hummed with manufacturing companies, restaurants, and other amenities. There were plenty of good jobs to go around.

But one by one, employers moved out. Today, downtown Bennettsville is pretty quiet. South Carolina as a whole has nearly 100,000 fewer manufacturing jobs than it did in 2000.

“Bennettsville used to be a more thriving community years ago,” said Lowery’s health care provider, nurse practitioner Pat Weaver. “With a lot of our plants leaving for, you know, overseas in the last 15-20 years really made a devastating impact. We used to have a hospital here and now we no longer have that. It is very poor.”

Weaver works for CareSouth, a nonprofit health center that has a federal government designation as a safety-net provider.

As she walks the halls of the clinic, checking on colleagues and patients, she says that of the 3,300 appointments she takes every year, more than 90% of the people she treats have Type 2 diabetes.

She and others point to Bennettsville’s changing economic fortune as a source of health problems in the community. Half the households in the city have an income of less than $32,000. Lower-income residents often can’t or don’t choose the kinds of healthy meals that would help them control their diabetes, she said.

“The fast foods don’t help at all, and a lot of people just eat it every day, and that’s a problem. It truly is,” Weaver said. “But we have programs to help them. We even have a program where we take patients to the grocery store and we teach them what to buy.”

CareSouth takes other steps, too, to fight the effects of poverty and disease in Bennettsville. The center has a sliding-fee scale based on ability to pay and an in-house pharmacy that uses a federal program to keep drug prices down.

For Lowery, having a medical provider like Weaver has been a lifeline. “She’s seen me through so much,” Lowery said. “She tried different medicines to get my diabetes intact.”

Finding Weaver came at a time when her family’s murders threw her into depression, her finances spiraled out of control, and her diabetes worsened. Weaver, she said, helped get her into counseling.

“When she found out what had happened, I honestly believe in my heart that she cried just like I cried,” Lowery said. “She did so much for me.”

South Carolina’s Choice on Medicaid

While there is no easy solution for Lowery, who is over 65 and enrolled in Medicare, the Urban Institute and others say a simple policy change could prevent others from getting to such a difficult stage in their disease and finances: Expand Medicaid.

“Seventy-nine out of the 100 counties with the highest levels of medical debt are in states that have not expanded Medicaid under the ACA,” the Urban Institute’s Braga said, referring to the Affordable Care Act.

Also known as Obamacare, the ACA offered states the option to expand their health insurance programs for the poor.

South Carolina is one of 10 states that have declined to do so, and where NPR identified more than two dozen counties that fall within the Diabetes Belt and have high rates of medical debt. There’s evidence from other states that people became healthier and owed less money to medical providers after Medicaid expansion.

A Boston University researcher looked at health centers just like CareSouth — more than 900 of them serving nearly 20 million patients.

The centers in states that did expand Medicaid reported better diabetes control than those in states that didn’t expand the program, and the effect was quick — within three years of the expansion.

Those improvements happened consistently among Black and Hispanic patients, who have higher rates of diabetes.

A study in Louisiana found that people who gained Medicaid coverage after an expansion there had reduced medical debt.

Lowery said that going forward she will continue to rely on her faith and her church community to help her through the tough times.

Still, she worries about the possible worsening of her diabetes and the financial stress of daily life.

“I wish things would get better,” she said. “I think I would sleep a little better, because sometimes it’s kind of hard for me to try to keep some food on the table.”

This article is from a partnership with NPR, where it was edited by Robert Little and Kamala Kelkar and produced by Meg Anderson; the photos were edited by Virginia Lozano.

About This Project

“Diagnosis: Debt” is a reporting partnership between KFF Health News and NPR exploring the scale, impact, and causes of medical debt in America.

The series draws on original polling by KFF, court records, federal data on hospital finances, contracts obtained through public records requests, data on international health systems, and a yearlong investigation into the financial assistance and collection policies of more than 500 hospitals across the country. 

Additional research was conducted by the Urban Institute, which analyzed credit bureau and other demographic data on poverty, race, and health status for KFF Health News to explore where medical debt is concentrated in the U.S. and what factors are associated with high debt levels.

The JPMorgan Chase Institute analyzed records from a sampling of Chase credit card holders to look at how customers’ balances may be affected by major medical expenses. And the CED Project, a Denver nonprofit, worked with KFF Health News on a survey of its clients to explore links between medical debt and housing instability. 

KFF Health News journalists worked with KFF public opinion researchers to design and analyze the “KFF Health Care Debt Survey.” The survey was conducted Feb. 25 through March 20, 2022, online and via telephone, in English and Spanish, among a nationally representative sample of 2,375 U.S. adults, including 1,292 adults with current health care debt and 382 adults who had health care debt in the past five years. The margin of sampling error is plus or minus 3 percentage points for the full sample and 3 percentage points for those with current debt. For results based on subgroups, the margin of sampling error may be higher.

Reporters from KFF Health News and NPR also conducted hundreds of interviews with patients across the country; spoke with physicians, health industry leaders, consumer advocates, debt lawyers, and researchers; and reviewed scores of studies and surveys about medical debt.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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While physicians mostly applauded a government-appointed panel’s recommendation that women get routine mammography screening for breast cancer starting at age 40, down from 50, not everyone approves.

Some doctors and researchers who are invested in a more individualized approach to finding troublesome tumors are skeptical, raising questions about the data and the reasoning behind the U.S. Preventive Services Task Force’s about-face from its 2016 guidelines.

“The evidence isn’t compelling to start everyone at 40,” said Jeffrey Tice, a professor of medicine at the University of California-San Francisco.

Tice is part of the WISDOM study research team, which aims, in the words of breast cancer surgeon and team leader Laura Esserman, “to test smarter, not test more.” She launched the ongoing study in 2016 with the goal of tailoring screening to a woman’s risk and putting an end to the debate over when to get mammograms.

Advocates of a personalized approach stress the costs of universal screening at 40 — not in dollars, but rather in false-positive results, unnecessary biopsies, overtreatment, and anxiety.

The guidelines come from the federal Department of Health and Human Services’ U.S. Preventive Services Task Force, an independent panel of 16 volunteer medical experts who are charged with helping guide doctors, health insurers, and policymakers. In 2009 and again in 2016, the group put forward the current advisory, which raised the age to start routine mammography from 40 to 50 and urged women from 50 to 74 to get mammograms every two years. Women from 40 to 49 who “place a higher value on the potential benefit than the potential harms” might also seek screening, the task force said.

Now the task force has issued a draft of an update to its guidelines, recommending the screening for all women beginning at age 40.

“This new recommendation will help save lives and prevent more women from dying due to breast cancer,” said Carol Mangione, a professor of medicine and public health at UCLA, who chaired the panel.

But the evidence isn’t clear-cut. Karla Kerlikowske, a professor at UCSF who has been researching mammography since the 1990s, said she didn’t see a difference in the data that would warrant the change. The only way she could explain the new guidelines, she said, was a change in the panel.

“It’s different task force members,” she said. “They interpreted the benefits and harms differently.”

Mangione, however, cited two data points as crucial drivers of the new recommendations: rising breast cancer incidence in younger women and models showing the number of lives screening might save, especially among Black women.

There is no direct evidence that screening women in their 40s will save lives, she said. The number of women who died of breast cancer declined steadily from 1992 to 2020, due in part to earlier detection and better treatment.

But the predictive models the task force built, based on various assumptions rather than actual data, found that expanding mammography to women in their 40s might avert an additional 1.3 deaths per 1,000 in that cohort, Mangione said. Most critically, she said, a new model including only Black women showed 1.8 per 1,000 could be saved.

A 2% annual increase in the number of 40- to 49-year-olds diagnosed with breast cancer in the U.S. from 2016 through 2019 alerted the task force to a concerning trend, she said.

Mangione called that a “really sizable jump.” But Kerlikowske called it “pretty small,” and Tice called it “very modest” — conflicting perceptions that underscore just how much art is involved in the science of preventive health guidelines.

Task force members are appointed by HHS’ Agency for Healthcare Research and Quality and serve four-year terms. The new draft guidelines are open for public comment until June 5. After incorporating feedback, the task force plans to publish its final recommendation in JAMA, the Journal of the American Medical Association.

Nearly 300,000 women will be diagnosed with breast cancer in the U.S. this year, and it will kill more than 43,000, according to National Cancer Institute projections. Expanding screening to include younger women is seen by many as an obvious way to detect cancer earlier and save lives.

But critics of the new guidelines argue there are real trade-offs.

“Why not start at birth?” Steven Woloshin, a professor at the Dartmouth Institute for Health Policy and Clinical Practice, asked rhetorically. “Why not every day?”

“If there were no downsides, that might be reasonable,” he said. “The problem is false positives, which are very scary. The other problem is overdiagnosis.” Some breast tumors are harmless, and the treatment can be worse than the disease, he said.

Tice agreed that overtreatment is an underappreciated problem.

“These cancers would never cause symptoms,” he said, referring to certain kinds of tumors. “Some just regress, shrink, and go away, are just so slow-growing that a woman dies of something else before it causes problems.”

Screening tends to find slow-growing cancers that are less likely to cause symptoms, he said. Conversely, women sometimes discover fast-growing lethal cancers soon after they’ve had clean mammograms.

“Our strong feeling is that one size does not fit all, and that it needs to be personalized,” Tice said.

WISDOM, which stands for “Women Informed to Screen Depending On Measures of risk,” assesses participants’ risk at 40 by reviewing family history and sequencing nine genes. The idea is to start regular mammography immediately for high-risk women while waiting for those at lower risk.

Black women are more likely to get screening mammograms than white women. Yet they are 40% more likely to die of breast cancer and are more likely to be diagnosed with deadly cancers at younger ages.

The task force expects Black women to benefit most from earlier screening, Mangione said.

It’s unclear why Black women are more likely to get the most lethal breast cancers, but research points to disparities in cancer management.

“Black women don’t get follow-up from mammograms as rapidly or appropriate treatment as quickly,” Tice said. “That’s what really drives the discrepancies in mortality.”

Debate also continues on screening for women 75 to 79 years old. The task force chose not to call for routine screening in the older age group because one observational study showed no benefit, Mangione said. But the panel issued an urgent call for research about whether women 75 and older should receive routine mammography.

Modeling suggests screening older women could avert 2.5 deaths per 1,000 women in that age group, more than those saved by expanding screening to younger women, Kerlikowske noted.

“We always say women over 75 should decide together with their clinicians whether to have mammograms based on their preferences, their values, their health history, and their family history,” Mangione said.

Tice, Kerlikowske, and Woloshin argue the same holds true for women in their 40s.

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 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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SACRAMENTO, Calif. — When Gov. Gavin Newsom took office four years ago, the Democrat went after Republicans on the national stage as they sought to gut the Affordable Care Act. Key to his ambitious health care agenda: reinstating the fine on Californians who don’t have health coverage, which had been eliminated at the federal level.

It was a tough sell for a new governor, and Newsom needed strong allies among state Democratic leaders, who at the time, in 2019, voiced concern about essentially levying a new tax on Californians unable to afford the rising cost of health care. Democrats, who, then as now, controlled the state legislature, ultimately backed Newsom in exchange for a promise: The state would levy the fine but use that money to provide financial assistance to offset out-of-pocket costs for Californians purchasing health insurance on the state exchange, Covered California.

But Newsom, now in his second term, has since backed off that promise. His administration is holding on to revenue raised from the so-called individual mandate — the requirement that people have health coverage or pay a fine. And his proposed budget for the upcoming fiscal year beginning July 1, which is being debated in the state legislature, funnels the money to the state’s general fund.

That is infuriating fellow Democrats who accuse him of breaking a promise and disregarding the millions of Californians who can’t afford their deductibles and copays.

California began fining the uninsured in 2020, raising an estimated $1.1 billion over the first three years — and the Newsom administration projects it will bring in more than $700 million more over the next two years, bringing the projected five-year total to $1.8 billion, according to the state Department of Finance. Democratic leaders said Newsom’s tactic of holding back the money for the general fund is a “rip-off.”

“Money from the mandate should stay in health care,” Senate President Pro Tem Toni Atkins told KFF Health News, arguing the state should be distributing money now to help people afford health coverage. “I don’t know what we’re waiting for. We’ve got to figure out a way to make health care more accessible, and there’s no question that the cost of health insurance is a barrier.”

Democratic lawmakers are expected to continue ratcheting up pressure on Newsom in hopes of reaching a deal by their June 15 deadline to pass a budget bill. “We’ve always felt that the money is meant to bring insurance costs down,” said Democratic Assembly member Phil Ting, chair of the Budget Committee.

Newsom in 2019 stumped for the individual mandate amid concerns over rising insurance premiums, vowing to reduce Covered California consumer health care costs while setting himself apart from then-President Donald Trump, who was attacking the insurance mandate as unfair. Congressional Republicans had gutted the federal penalty — part of the Affordable Care Act — in 2017. Newsom argued it would still work in California to lower health care costs, and to help him achieve his goal of universal health care — the centerpiece of his ambitious health care agenda.

Newsom now argues that federal health insurance subsidies that offset the cost of monthly premiums are sufficient. And, in the face of a projected $32 billion state budget deficit, Newsom says California cannot afford to spend the money and further reduce out-of-pocket costs. He argues spending the money to slash deductibles, for instance, “would be “unsustainable.” His proposed budget would instead keep the money for the state’s general fund, to be used for anything California wants to spend it on.

But health care advocates who lobbied in favor of the fine, as well as many Democratic lawmakers, say the funds could be lifesaving and should be distributed now.

“The individual mandate was not intended to create funds for other government programs outside of health care,” said Democratic Assembly member Jim Wood, of Santa Rosa, chair of the Assembly Health Committee, at a heated budget hearing this spring. “The clear intent of the legislature was that this money was meant to go to affordability.”

Wood said he might have rejected Newsom’s plan if he had known the revenue it generated would be deposited directly into the general fund. “I don’t think I would have supported it,” he said. “It just feels like a violation of what we thought we were doing.”

Soaring out-of-pocket health care costs, for insurance premiums and deductibles for instance, are leading people to forgo health care. In California, a staggering 52% of residents report having skipped or delayed treatment in the past year for financial reasons, according to a recent survey by the nonprofit California Health Care Foundation. (KFF Health News publishes California Healthline, which is an editorially independent service of the California Health Care Foundation.)

Diana Douglas, a lobbyist with Health Access California, which was part of the coalition that backed the state’s coverage mandate in 2019, said Newsom must recognize soaring costs and spend the money now on affordability assistance. “This penalty money should be used to help Californians afford coverage and care.”

Health insurance plans offered by Covered California are continuing to get more expensive. Deductibles for a midtier insurance plan, for example, will jump to $5,400 next year, according to Covered California, up from $4,750 this year and just $3,700 two years ago.

And even many Californians who are purchasing coverage are putting off treatment in the face of high costs. A survey by Covered California in 2022 found that 48% of its consumers delayed important medical care due to cost.

Newsom this spring dodged a question by KFF Health News about the criticism he is facing over his push to retain the mandate money, saying simply he’s “proud” to have established the state coverage mandate and noting that federal premium subsidies are available for Californians purchasing coverage via Covered California. His administration defended the push to funnel money into the general fund, saying revenues would be repaid to a special health fund and be available to use on health care eventually, if the federal government cuts back existing premium subsidies. Administration officials argue that Newsom is essentially borrowing the money and say it’ll be repaid later — though lawmakers have expressed concern that he’ll never make good on that promise.

Critics and some Democratic lawmakers say holding back the money is a double whammy for low- and middle-income residents who are struggling to pay for coverage, and argue that it amounts to a tax on the poor. “It feels like we’re trying to save it on the backs of our low-income communities,” said Democratic state Sen. Caroline Menjivar, who represents the state’s San Fernando Valley.

Democratic lawmakers this year are backing an alternative proposal, championed by Health Access California, to spend revenue from fining uninsured residents on increasing health insurance subsidies for low- and middle-income people. They would be making good on a deal advocates secured with state Democratic lawmakers last year to reduce or eliminate out-of-pocket costs in Covered California and scrap deductibles entirely for a mid-tier plan.

“We need to make sure people not only have health coverage, but that they can also afford to actually use it,” said Ronald Coleman Baeza, a health care lobbyist with the California Pan-Ethnic Health Network.

Although Newsom and his Democratic allies have passed major expansions in coverage, the state does not have universal health care. Experts say more than 2.5 million Californians remain uninsured, including unauthorized immigrants who earn too much to qualify for Medi-Cal, and lawmakers are growing increasingly agitated that not all residents who are insured can afford to use their coverage.

“There was a clear commitment that these dollars were going to be used to bring down heath care costs, and we haven’t done it,” said Assembly member Pilar Schiavo, a Democrat representing the Santa Clarita Valley, who introduced a bill that would require any revenue raised from the individual mandate be permanently set aside for health care. Though it died this year, it can be revived next year, and advocates say they will continue pressing Newsom to distribute the existing money to Covered California consumers.

“We need to keep our promises,” Schiavo said. “If you have insurance that you can’t afford to use, or you’re afraid to go see the doctor because of how high that bill might be, then you don’t truly have access or universal coverage.”

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 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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The agreement puts hundreds of thousands of older adults aged 50-54 at risk of losing food assistance.

Details are trickling out about the accord that could avert a default on the national debt. Here’s what to know.

This week at CBPP, we focused on the federal budget, housing, income security, food assistance, and health.On the federal budget, we updated our roundup of analyses on House Republicans’ harmful debt-ceiling-and-cuts bill. Sharon Parrott tweeted about the need to protect people who can’t afford food, rent, or health care from House Republican efforts to make them pawns in their debt ceiling scheme.On housing, Sonya Acosta explained that the House Republican bill would force deep cuts in housing assistance, harming families, older adults, and people with disabilities.On income security, Aditi

A quick title search of the Library’s catalog found:

• 2,296 titles containing the phrase civil procedure
• 2,070 with constitutional law
• 623 entries under federal tax
• 413 items with the title banking law
• 417 entries for bankruptcy
• 1,560 under estate planning

But I could only find one with the title pictured above.

Ok, so it is not the title, but it is the cover of a 1914 book.

The title is actually Key word index to the notes in the American negligence reports.

When I hear “key” anything in relation to legal materials, I immediately think of the West Key Number System which indexes subjects across titles. This key word index is described in its preface as a means to eliminate cross-referencing as it classifies the material by (among other things) legal principle involved, injuries sustained and causes of injuries within a single title. It indexes the 21 volumes of the American negligence reports. So, sort of the same concept, but not a developed system like West has built.

Whatever the contents, I like that they decided to have a sense of humor about their publication. More proof that not all law material is dry or dull.

Subscribe to In Custodia Legis – it’s free! – to receive interesting posts drawn from the Law Library of Congress’s vast collections and our staff’s expertise in U.S., foreign, and international law.

Millions of Americans in the past few years have run into this experience: filing a health care insurance claim that once might have been paid immediately but instead is just as quickly denied. If the experience and the insurer’s explanation often seem arbitrary and absurd, that might be because companies appear increasingly likely to employ computer algorithms or people with little relevant experience to issue rapid-fire denials of claims — sometimes bundles at a time — without reviewing the patient’s medical chart. A job title at one company was “denial nurse.”

It’s a handy way for insurers to keep revenue high — and just the sort of thing that provisions of the Affordable Care Act were meant to prevent. Because the law prohibited insurers from deploying previously profit-protecting measures such as refusing to cover patients with preexisting conditions, the authors worried that insurers would compensate by increasing the number of denials.

And so, the law tasked the Department of Health and Human Services with monitoring denials both by health plans on the Obamacare marketplace and those offered through employers and insurers. It hasn’t fulfilled that assignment. Thus, denials have become another predictable, miserable part of the patient experience, with countless Americans unjustly being forced to pay out-of-pocket or, faced with that prospect, forgoing needed medical help.

A recent KFF study of ACA plans found that even when patients received care from in-network physicians — doctors and hospitals approved by these same insurers — the companies in 2021 nonetheless denied, on average, 17% of claims. One insurer denied 49% of claims in 2021; another’s turndowns hit an astonishing 80% in 2020. Despite the potentially dire impact that denials have on patients’ health or finances, data shows that people appeal only once in every 500 cases.

Sometimes, the insurers’ denials defy not just medical standards of care but also plain old human logic. Here is a sampling collected for the KFF Health News-NPR “Bill of the Month” joint project.

• Dean Peterson of Los Angeles said he was “shocked” when payment was denied for a heart procedure to treat an arrhythmia, which had caused him to faint with a heart rate of 300 beats per minute. After all, he had the insurer’s preapproval for the expensive ($143,206) intervention. More confusing still, the denial letter said the claim had been rejected because he had “asked for coverage for injections into nerves in your spine” (he hadn’t) that were “not medically needed.” Months later, after dozens of calls and a patient advocate’s assistance, the situation is still not resolved.
• An insurer’s letter was sent directly to a newborn child denying coverage for his fourth day in a neonatal intensive care unit. “You are drinking from a bottle,” the denial notification said, and “you are breathing on your own.” If only the baby could read.
• Deirdre O’Reilly’s college-age son, suffering a life-threatening anaphylactic allergic reaction, was saved by epinephrine shots and steroids administered intravenously in a hospital emergency room. His mother, utterly relieved by that news, was less pleased to be informed by the family’s insurer that the treatment was “not medically necessary.”

As it happens, O’Reilly is an intensive-care physician at the University of Vermont. “The worst part was not the money we owed,” she said of the $4,792 bill. “The worst part was that the denial letters made no sense — mostly pages of gobbledygook.” She has filed two appeals, so far without success.

Some denials are, of course, well considered, and some insurers deny only 2% of claims, the KFF study found. But the increase in denials, and the often strange rationales offered, might be explained, in part, by a ProPublica investigation of Cigna — an insurance giant, with 170 million customers worldwide.

ProPublica’s investigation, published in March, found that an automated system, called PXDX, allowed Cigna medical reviewers to sign off on 50 charts in 10 seconds, presumably without examining the patients’ records.

Decades ago, insurers’ reviews were reserved for a tiny fraction of expensive treatments to make sure providers were not ordering with an eye on profit instead of patient needs.

These reviews — and the denials — have now trickled down to the most mundane medical interventions and needs, including things such as asthma inhalers or the heart medicine that a patient has been on for months or years. What’s approved or denied can be based on an insurer’s shifting contracts with drug and device manufacturers rather than optimal patient treatment.

Automation makes reviews cheap and easy. A 2020 study estimated that the automated processing of claims saves U.S. insurers more than $11 billion annually.

But challenging a denial can take hours of patients’ and doctors’ time. Many people don’t have the knowledge or stamina to take on the task, unless the bill is especially large or the treatment obviously lifesaving. And the process for larger claims is often fabulously complicated.

The Affordable Care Act clearly stated that HHS “shall” collect the data on denials from private health insurers and group health plans and is supposed to make that information publicly available. (Who would choose a plan that denied half of patients’ claims?) The data is also supposed to be available to state insurance commissioners, who share with HHS the duties of oversight and trying to curb abuse.

To date, such information-gathering has been haphazard and limited to a small subset of plans, and the data isn’t audited to ensure it is complete, according to Karen Pollitz, a senior fellow at KFF and one of the authors of the KFF study. Federal oversight and enforcement based on the data are, therefore, more or less nonexistent.

HHS did not respond to requests for comment for this article.

The government has the power and duty to end the fire hose of reckless denials harming patients financially and medically. Thirteen years after the passage of the ACA, perhaps it is time for the mandated investigation and enforcement to begin.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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State abortion bans in Tennessee and beyond, which constrain women’s health care, have put family planning clinics at risk of losing their federal funding.

The conflict involves the Title X family planning program, which provides services to low-income people, including minors. As of 2021, more than 3,200 clinics used federal grants to supply free or low-cost contraception, testing for sexually transmitted infections, screening for breast and cervical cancer, and pregnancy-related counseling.

Federal regulations for the program, which was established more than 50 years ago to reduce unintended pregnancies, say participating clinics must offer pregnant women information about terminating pregnancies and abortion referrals on request. But following those rules puts medical providers at odds with state laws banning abortion, some of which threaten jail time, fines, or the loss of medical licenses if they help someone end a pregnancy.

President Joe Biden’s administration at the end of March cut off Tennessee’s Title X funds after determining the state health department — which oversees its clinics and was awarded $7.1 million last year — violated federal rules by not counseling patients about abortion. “Continued funding is not in the best interest of the government,” two U.S. Department of Health and Human Services officials wrote to Tennessee officials on March 20. The state had more than 100 Title X clinics as of March, according to an HHS directory.

In 2022, the federal government awarded Title X grants to roughly 90 entities, a mix of state and local governments and private organizations. Those grantees distribute funds to public or private clinics.

Federal law prohibits clinics from using Title X money to pay for abortions. However, HHS requires clinics to offer pregnant women information about prenatal care and delivery, infant care, foster care, adoption, and pregnancy termination.

In states where abortion is generally illegal, that could mean directing patients to providers in other states. But Tennessee told family planning clinics they could discuss only services that were legal in the state — effectively cutting off any talk about abortion.

Tennessee allows abortions only under limited circumstances, including to save a pregnant person’s life. State health department policies for family planning “are consistent with state law,” said Jade Byers, a spokesperson for Republican Gov. Bill Lee. Tennessee allocated state funds to replace the federal money.

Whitney Rice, director of Emory University’s Center for Reproductive Health Research in the Southeast, said failing to provide timely information and referrals for abortion “could contribute to further delays in people’s ability to access that care,” especially because women may need to travel long distances for it.

The clash over the federally funded clinics is part of the widening fallout from the Supreme Court’s June 2022 decision in Dobbs v. Jackson Women’s Health Organization ending the constitutional right to an abortion.

In Idaho, which has a near-total abortion ban, two Planned Parenthood clinics with Title X funding recently stopped giving patients abortion information and halted out-of-state referrals, according to a lawsuit Planned Parenthood and the American Civil Liberties Union filed in April against Idaho’s attorney general.

State law prohibits providers from assisting in performing or attempting to perform an abortion, and violators risk having their medical license suspended.

The clinics’ decision came after Idaho Attorney General Raúl Labrador, in a March 27 letter, said Idaho law prohibits providers from “referring a woman across state lines to access abortion services.”

That interpretation is “preventing medical professionals from providing full information to their patients,” said Mack Smith, spokesperson for Planned Parenthood Great Northwest, Hawaii, Alaska, Indiana, Kentucky.

Though Labrador later withdrew the letter, Planned Parenthood clinics there still are not referring patients out of state for abortions, Smith said.

Before Labrador’s letter, the lawsuit states, Planned Parenthood staff would furnish general information about pregnancy options, a list of abortion providers in other states and organizations that help defray patients’ abortion and related costs, and a flyer about Idaho’s abortion law. Staff would also occasionally help patients schedule care outside of Idaho. Now, “Planned Parenthood providers no longer do so.”

“When my patients require abortions, I am now forced to tell them that I am unable to help them and that I cannot say anything about their abortion options in other states,” Caitlin Gustafson, a physician who had practiced at an Idaho Planned Parenthood clinic, said in a legal declaration.

Kimberley Harris, a visiting assistant professor at Texas Tech University School of Law, said clinicians in states with strict bans worry about referring patients to other states because a prosecutor could interpret that as “aiding and abetting an abortion.”

Facilitating medication abortion in particular could “pose potential risk to health care providers,” Harris said, because a patient they refer to obtain pills out of state might then take them in a state where abortion is illegal. Medication abortion accounts for most abortions in the U.S. and involves taking a series of pills during the first 10 weeks of pregnancy.

“The federal regulation might require me to provide counseling and provide information,” Harris said of clinicians. “But if you’re telling providers that they may lose their license, or they might go to jail, or they might face a huge fine? Rightfully, they’re going to be concerned.”

As senior HHS officials travel the country, they are getting an earful about the issue.

HHS spokesperson Tara Broido said that, increasingly, “providers and patients have raised concerns about the impact that the Dobbs decision has had on access” to pregnancy counseling and referrals.

KFF Health News asked Broido which grantees have not been following the counseling and referral requirements. She declined to say.

People who use Title X’s services are disproportionately women. A report from HHS’ Office of Population Affairs said roughly two-thirds of 1.7 million patients in 2021 had family incomes at or below the poverty line. Thirty-six percent were uninsured, more than two times the national uninsured rate for adults.

The Office of Population Affairs and the Centers for Disease Control and Prevention jointly recommend family planning services that clinics are expected to follow. They include pregnancy testing and counseling.

The Title X program has been whipsawed before.

In 2019, the Trump administration barred Title X clinics from making abortion referrals. And the administration said abortion providers couldn’t share physical space with Title X clinics. The number of participating clinics subsequently dropped sharply — from 3,825 sites in 2019 to 3,031 the following year. With fewer clinics, the number of people receiving free or low-cost family planning services through the program plummeted from 3.1 million in 2019 to 1.5 million in 2020.

The Biden administration in 2021 overturned many of the Trump policies. The Biden rules remain in effect, but several states sued to block them. That litigation is ongoing.

Sarah Parshall Perry, a senior legal fellow at the conservative Heritage Foundation think tank, anticipates additional challenges to Title X rules because “states have an interest in defending their own laws and their ability to enforce their own laws.”

In Texas, which prohibits abortion with few exceptions, the nonprofit Every Body Texas oversees 154 Title X family planning clinics.

Its providers are still counseling pregnant women about options, but “that’s not to say it hasn’t been made very, very difficult,” said Stephanie LeBleu, the group’s acting Title X director.

LeBleu said the approach to counseling “can look different” from clinic to clinic. For example, clinics in rural Texas “have to be a lot more cautious about how they share information with their clients,” LeBleu said. Sometimes that means making a “referral to the referral” — such as directing patients to organizations like All-Options, which operates a national pregnancy options hotline.

ask for information on pregnancy options, “our clinics refer clients to other resources,” Karen M. Landers, chief medical officer for the Alabama Department of Public Health, said in a statement. The department declined to say what those resources are and whether clinicians worry about being prosecuted under Alabama law for providing abortion counseling or referrals.

“Clients are additionally informed of the legality of pregnancy termination in the state,” Landers wrote.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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The Host Julie Rovner KFF Health News @jrovner Read Julie's stories. Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

How should journalists cover political candidates who make false claims about the safety and effectiveness of vaccines? That question will need to be answered now that noted anti-vaccine activist Robert F. Kennedy Jr. has officially entered the 2024 presidential race.

Meanwhile, South Carolina has become one of the last states in the South to pass an abortion ban, making the procedure all but impossible to obtain for women across a broad swath of the country.

This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Rachel Cohrs of Stat, and Sarah Karlin-Smith of the Pink Sheet.

Panelists Rachel Cohrs Stat News @rachelcohrs Read Rachel's stories Sarah Karlin-Smith Pink Sheet @SarahKarlin Read Sarah's stories Alice Miranda Ollstein Politico @AliceOllstein Read Alice's stories

Among the takeaways from this week’s episode:

• Republican lawmakers and President Joe Biden continue to bargain over a deal to avert a debt ceiling collapse. Unspent pandemic funding is on the negotiating table, as the White House pushes to protect money for vaccine development — though the administration has drawn criticism for a lack of transparency over what would be included in a clawback of unspent dollars.
• In abortion news, South Carolina is the latest state to vote to restrict access to abortion, passing legislation this week that would ban abortion after six weeks of pregnancy — shortly after pregnant people miss their first period. And Texas is seeing more legal challenges to the state law’s exceptions to protect a mother’s life, as cases increasingly show that many doctors are erring on the side of not providing care to avoid criminal and professional liability.
• Congress is scrutinizing the role of group purchasing organizations in drug pricing as more is revealed about how pharmacy benefit managers negotiate discounts. So-called GPOs offer health care organizations, like hospitals, the ability to work together to leverage market power and negotiate better deals from suppliers.
• Lawmakers are also exploring changes to the way Medicare pays for the same care performed in a doctor’s office versus a hospital setting. Currently, providers can charge more in a hospital setting, but some members of Congress want to end that discrepancy — and potentially save the government billions.
• And our panel of health journalists discusses an important question after a prominent anti-vaccine activist entered the presidential race last month: How do you responsibly cover a candidate who promotes conspiracy theories? The answer may be found in a “truth sandwich.”

Also this week, Rovner interviews KFF Health News senior correspondent Aneri Pattani about her project to track the money from the national opioid settlement.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: KFF Health News’ “Remote Work: An Underestimated Benefit for Family Caregivers,” by Joanne Kenen

Alice Miranda Ollstein: Reuters’ “How Doctors Buy Their Way out of Trouble,” by Michael Berens

Rachel Cohrs: ProPublica’s “In the ‘Wild West’ of Outpatient Vascular Care, Doctors Can Reap Huge Payments as Patients Risk Life and Limb,” by Annie Waldman

Sarah Karlin-Smith: The New York Times’ “Heat Wave and Blackout Would Send Half of Phoenix to E.R., Study Says,” by Michael Levenson

Also mentioned in this week’s episode:

• KFF Health News’ “Abortion Bans Are Driving Off Doctors and Closing Clinics, Putting Basic Health Care at Risk,” by Julie Rovner.
• Stat’s “House Panel Takes First Steps Toward Reining In Hospitals With ‘Site-Neutral’ Changes,” by Rachel Cohrs.
• Vice’s “ABC News and CNN Manage to Demonstrate Exactly What Not to Do With Robert F. Kennedy Jr.,” by Anna Merlan.

Credits Francis Ying Audio producer Emmarie Huetteman Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ ‘What the Health? on Spotify, Apple Podcasts, Stitcher, Pocket Casts, or wherever you listen to podcasts.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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May is Asian American Pacific Islander (AAPI) Month, when the Law Library celebrates the accomplishments that Asian and Pacific Islander Americans have made to American history, society and law. Dr. Mabel Ping Hua Lee, a twentieth-century Chinese American economist, was also a suffragist and a women’s rights advocate who worked within the Chinese American community to get women the right to vote.

Mabel Ping Hua Lee was born in Guangzhou, China in 1896. Well-educated in China and Hong Kong, she won a Boxer Idemnity Scholarship, allowing her to study at Erasmus Hall Academy. She and her family moved to Brooklyn in 1905 so she could start her studies. She was a gifted student and at age 16 she entered Barnard College, while pursuing her interests in women’s suffrage. She helped organize a delegation of Chinese American women to march in the May 4, 1912 suffragist demonstration in New York City, leading them while she rode on horseback.  The New York Tribune wrote an article about her suffrage activism, “Chinese Girl Wants Vote”, demonstrating how extraordinary her efforts were for the time. She wrote an essay in May 1914, “The Meaning of Woman Suffrage,” for The Chinese Students Monthly, where she noted, “[Suffrage for women] is nothing more than a wider application of our ideas of justice and equality. We all believe in the idea of democracy; woman suffrage or the feminist movement (of which woman suffrage is a fourth part) is the application of democracy to women.“ While at Columbia, she was a member of the Women’s Political Equality League. In 1915, at the invitation of the Women’s Political Union, she gave a speech, “China’s Submerged Half,” which was covered by the New York Times. In her speech, she stated, “For no nation can ever make real and lasting progress in civilization unless its women are following close to its men if not actually abreast with them. In the fierce struggle for existence among the nations, that nation is badly handicapped which leaves undeveloped one half of its intellectual and moral resources.”

Dr. Mabel P. Lee (ca. 1920-1925) George Grantham Bain Collection, Library of Congress Prints and Photographs Division http://hdl.loc.gov/loc.pnp/ggbain.35680

 

Women won the right to vote in New York State in 1917, and in the United States in 1919. However, the Chinese Exclusion Act (ch. 126, 22 Stat. 58), passed in 1882, put strict limits on immigration and citizenship for Chinese people coming to the United States. Mabel Lee was unable to gain citizenship as a result of this law. She could not vote when the right was granted to most women in the U.S., despite all her efforts for the cause. The act was repealed in 1943, but there is no evidence that Dr. Lee ever voted in a U.S. election.

She continued her education at Columbia after graduating from Barnard. She earned her Ph.D. in economics in 1921. Dr. Lee was reportedly the first Chinese woman in the U.S. to earn a doctorate. She published her book, The Economic History of China, after she earned her degree. Her plan was to return to China after completing postdoctoral studies in Europe, and continue her economics and women’s rights work in China. However, her father died in 1924, and she returned to the U.S. to help her mother. She took on his role as director of the mission of the First Chinese Baptist Church of New York City, and she founded the Chinese Christian Center to provide social services to local Chinese people. She spent the rest of her life working for her community, for women’s rights and for equality for all. The United States Postal Service named Manhattan’s Chinatown Post Office after Dr. Mabel Ping Hua Lee on December 3, 2018.

Sources

JK1896 .C25 2020  Cahill, Cathleen D. Recasting the vote : how women of color transformed the Suffrage movement.

HQ799.2.P6 K346 2023  Kahn, Mattie. Young and restless: the untold history of American girls in protest.

HC427 .L4 Lee, Mabel Ping-hua, 1897-  The economic history of China.

LC3051.A25 “The Meaning of Woman Suffrage,” The Chinese Students’ Monthly, vol. 9 (May 12, 1914), p. 526-31.

Tseng, Timothy (1996) “Dr. Mabel Lee: The Interstitial Career of a Protestant Chinese American Woman, 1924-1950.” Paper presented at the Organization of American Historians Annual Meeting, Chicago, Illinois.

Subscribe to In Custodia Legis – it’s free! – to receive interesting posts drawn from the Law Library of Congress’s vast collections and our staff’s expertise in U.S., foreign, and international law.

Catherine Reitzel’s multiple sclerosis medication costs nearly $100,000 a year. Kris Garcia relies on a drug for a blood-clotting disorder that runs $10,000 for a three-day supply. And Mariana Marquez-Farmer would likely die within days without her monthly $300 vial of insulin.

At best, a Colorado panel of medical and pharmacy experts seeking to cut the costs of expensive drugs will be able to help only one of them.

Starting this summer, the state’s Prescription Drug Affordability Board will choose up to 18 high-cost drugs for review over the next three years to determine if the medications are unaffordable and whether to cap what health plans and consumers pay for them.

But with hundreds of expensive drugs to choose from, the board members face tough decisions about who will get help now and who will have to wait.

Do they tackle drugs with extremely high costs taken by only a handful of patients, or drugs with merely very high costs taken by a larger group? Should they consider only out-of-pocket costs paid by consumers, such as for insulin, whose copays Colorado caps at $50 a month, or the total cost of the drug to the health system? Will they weigh only drug prices, or will they try to right social wrongs with their choices?

And what does “affordable” even mean?

“That question alone is a lot harder to answer than it might seem at face value,” said Jennifer Reck, project director for the National Academy for State Health Policy’s Center for State Prescription Drug Pricing. “You immediately get into how utterly complex our drug supply chain is, how opaque it is, how many different prices there are,” she said.

Maryland was the first state to establish a drug affordability board in 2019, but funding challenges and the pandemic have slowed its progress. Colorado passed a bill creating its board in 2021 and has already moved ahead of Maryland in the process. Washington followed in 2022 but is still in its early phases of implementation.

Maine, New Hampshire, Ohio, and Oregon have also established boards, but they lack the power to limit drug payments. And at the federal level, the Inflation Reduction Act of 2022 included a provision requiring the Health and Human Services secretary to negotiate prices with drug companies for a small number of the most costly medications covered by Medicare.

It’s taken years for the Colorado and Maryland board members to create all the rules and regulations to govern their work before getting to the point of looking at specific drugs.

“It’s just a long, tortuous government process to get things up and running,” said Gerard Anderson, a professor of health policy and management at Johns Hopkins University, and a member of Maryland’s board. “You basically have to dot every ‘i’ and cross every ‘t’ in order not to get sued.”

Setting Priorities

On May 12, Colorado released its first list of hundreds of drugs eligible for review, mostly because they each cost more than $30,000 for a course of treatment. Next month, they’ll release a dashboard ranking those drugs according to the board’s priorities. The dashboard can also be used to examine which drugs have the highest price tags, which have had the largest increases in price, and which the state spends the most on. That would allow the board to begin affordability reviews this summer and set payment limits for the first four to eight drugs sometime in 2024. But board members will first have to set their priorities, and those could change from year to year.

“Maybe one year we focus on the impact to the system, and another year we focus on out-of-pocket costs, and one year we focus on a lifesaving drug that has smaller utilization,” said Lila Cummings, director of the Colorado board.

Such approaches could pit one group of patients against others looking for cost relief. But Cummings said not all groups are eager to see payment limits.

“Some of them said, ‘We want the board to focus on our drugs,’ and others said, ‘Please leave us alone,’” she said.

That reluctance likely reflects the close ties that some patient groups have with the manufacturers of their medications, including receiving funding from the drugmakers.

“We have seen cases in public hearings — it seems counterintuitive or surprising — where a patient group, instead of being thrilled that they might have access to the drugs at a lower price, instead are arguing against upper payment limits,” Reck said. “But in most cases, there’s a pretty clear financial connection to drug manufacturers.”

Maryland has also received input from patient groups as it finalizes its regulations.

“So far it has not been, ‘Pick me! Pick me! Pick me!’” Anderson said. But that could change once the Maryland board begins its affordability reviews this fall.

The drug that Garcia, 47, of Denver, takes did not make the board’s list. Diagnosed with four bleeding disorders, including von Willebrand disease, he needs the medication Humate-P, made by CSL Behring, to replace one of the clotting factors missing in his blood. This winter, driving home from his job at the airport, Garcia hit a patch of black ice, spun out, and careened into a concrete barrier at 75 mph. He needed the expensive medication every day for the first five days after the accident, and then every other day for a full month.

“It’s not like I can just sit there and say no to this medication, because my bleeds get so bad,” he said.

According to Perry Jowsey, executive director of the National Hemophilia Foundation’s Colorado chapter, about 300 to 400 individuals are being treated for von Willebrand disease in Colorado. That’s far fewer than the roughly 10,000 Coloradans with MS or the 74,000 who manage their diabetes with insulin.

“In my shoes, I would target what would help the most people,” Garcia said. “You have to find a balance, especially starting out. You’re not going to be able to help everyone.”

The Colorado and Maryland boards will rely on data from state databases that show how much various public and private health plans pay for drugs. That data, however, doesn’t capture what uninsured patients pay, and it doesn’t give any insight into how much manufacturers pay for research and development.

“The goal is not to stifle innovation,” Anderson said. “But we can’t get any public data, so we have to ask the pharmaceutical industry, and they’re not required to give us the data.”

The boards want to ensure that patients like Reitzel still have access to new and better therapies. Reitzel, 38, of Highlands Ranch, was diagnosed with multiple sclerosis in 2008 and has switched medications several times seeking one whose side effects she could tolerate. “They’re all terrible in their own special way,” she said.

In 2021, she began taking a relatively new drug from Biogen and Alkermes called Vumerity, which was included on Colorado’s list of eligible drugs. But the cost of a three-month supply was nearly $24,000, including a copay of more than $7,000. Biogen provides up to $20,000 in annual copay assistance through a debit card she can use at the pharmacy. But now her health plan no longer credits those payments toward her deductible. It makes it almost impossible for her to meet the $25,000 out-of-pocket maximum under her plan.

“Primarily for this reason, I am no longer taking any medication,” Reitzel said, “and have to only hope my disease does not progress.”

Colorado legislators passed a bill to require health plans to count copay assistance programs toward patients’ deductibles for drugs with no generic equivalents, but that provision does not take effect until 2025.

Insulin as an Outlier?

Just a couple of years ago, insulin may have been a higher priority for drug affordability boards, but now it’s not so clear. Both Colorado and Maryland have established insulin copay caps that provide pocketbook relief, at least for patients with coverage. And manufacturers are making their own moves to lower insulin prices. That could prompt the boards to bypass insulin and concentrate their limited resources on other high-cost drugs.

Copay caps do not lower the actual cost of insulin but instead spread it among members of the health plan through higher premiums. The Colorado copay caps don’t help new state residents and initially did not help those without insurance, either. Both of those hurdles would have applied to Marquez-Farmer when she moved from California to Colorado Springs a couple of years ago.

“I got married to my husband during covid because I didn’t have insurance,” she said. “I loved him, and it all worked out, but a big reason for me to marry him was because I would not be able to afford insulin.”

Marquez-Farmer, 34, said that while insulin may not be the most expensive drug on the market, many Coloradans, particularly those from marginalized communities who have higher rates of diabetes, struggle to afford it.

“I’m not saying the other medicines are not important, because obviously they are,” she said. “The reality is there’s more people who are being affected by not being able to afford their insulin and a lot of people who are dying because of them rationing insulin.”

Andrew York, executive director of the Maryland board, said the payment limits should be viewed as a last resort, a tool that can be used when other cost-control measures haven’t worked.

“The goal is for folks to never be able to say that they can’t afford their insulin. And I think we may get there soon enough just because of how much is happening in that space,” he said. “So if that’s the case, then maybe boards don’t need to use the upper payment limit tool.”

At least one form of insulin was included on Colorado’s list of drugs eligible for review, but not the most commonly taken brand-name insulins. That precludes the Colorado board from addressing insulin costs more broadly.

The pharmaceutical industry has pushed back against the concept of payment limits, warning that drugmakers could pull out of states that set payment limits.

“The boards are acutely aware of this discussion point. The interest and the purpose of these boards is to increase access to the drugs, not decrease it,” York said. “But there’s kind of this game theory element of: How will manufacturers react?”

Reck discounted the notion that a payment limit would prompt a manufacturer to abandon a profitable market.

“Unfortunately, it’s kind of a scary message and it can be impactful on patients,” she said.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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For support, call Trans Lifeline at 877-565-8860 or The Trevor Project at 866-488-7386; or text to 678-678.

Josie had put off packing long enough. The high school sophomore in St. Augustine, Florida, sat on her bed while her mom, Sarah, pulled clothes from her closet.

It held a trove of good memories — like the red dress Josie wore to the winter homecoming dance and a pink cover-up she sported at a friend’s pool party. Good times like these have felt scarce lately. Josie, who’s transgender, no longer feels welcome in Florida.

Her family requested they be identified by their first names only, fearing retaliation in a state where Republican Gov. Ron DeSantis and other officials have proposed, politicized, and passed policies in health care and education that limit identity expression, access to certain school activities, and accommodations for trans people.

The ACLU is tracking bills it calls an “attack on LGBTQ rights, especially transgender youth.” State legislation has forced some residents like Josie to rethink where they want to call home.

Josie moved more than a thousand miles from St. Augustine — and her parents — to start a new life in Rhode Island and stay with her aunt and uncle, who live outside Providence.

Preparing her for the move, Josie’s mom held up outfits and asked, “Staying or going?”

The formal dress could stay behind. Cardigans and overalls went in the suitcase. At one point, the family dog, Reesie, crawled past the luggage to snuggle up to Josie.

“She has a sense when I’m sad, and just comes running in,” said Josie, 16.

Moving to Rhode Island had been Plan B for some time, but Josie said she never thought it would happen. Much has changed in the past year.

Florida is one of more than a dozen states that have passed bans on gender-affirming medical treatments for minors, such as puberty blockers, hormone therapy, and certain surgeries.

Florida’s medical boards began debating those bans last summer. For months, Josie was terrified she would lose access to hormones she takes to help her body align with her identity.

Board members argued gender-affirming treatments were “experimental” and, in March, barred doctors from prescribing them to minors. They allowed children who had already started care to continue. But Josie didn’t trust that her access would last.

This spring, the legislature considered forcing all trans youth to stop treatment by Dec. 31, part of a bill to bolster restrictions on transgender care.

“I thought that they would realize what they’ve done wrong and repeal some things,” Josie said. “But they just kept going. It just became, like, too real, too fast.”

Lawmakers ended up stripping that provision just before the session ended this month, allowing young people like Josie to stay in treatment.

But she had already made her decision to move out of state. School has been challenging at times since Josie came out as trans in eighth grade. Some childhood friends rejected her.

Josie wanted to play on the girls tennis team, but Florida law bans trans girls and women from competing on school teams meant for athletes assigned female at birth.

She said living in Florida was also especially painful after the state passed the Parental Rights in Education law, which “prohibits classroom discussion about sexual orientation or gender identity in certain grade levels.” Critics call it the “Don’t Say Gay” law and said it has had a chilling effect on some teachers. Josie noticed stickers signifying that areas were “safe spaces” for LGBTQ+ people had been taken down at school.

“Which is just ridiculous, like you want your students to be comfortable and safe,” she said.

The new laws and anti-trans rhetoric are hurting kids across Florida, said Jennifer Evans, a clinical psychologist at the University of Florida’s Youth Gender Program in Gainesville.

“I’m seeing more anxiety, more depression,” Evans said. “Things I hear patients say are, ‘The government doesn’t want me to exist.’ They don’t feel safe.”

States are pushing measures on all sorts of gender-related issues — not just health care, but what schools can teach or which bathrooms people can use.

Bills don’t have to pass to cause harm, said Evans, who is queer.

“It’s a lot to feel like enough people in this country don’t agree with your existence — which actually isn’t affecting them — that people want to shut down other people’s access to living complete and affirmed lives,” she said. “It’s painful to see that.”

Four families who sought care at Evans’ clinic have already left Florida, she said, while another 10 plan to move this year. Some older teens she treats also want to get out when they turn 18.

But moving isn’t easy for many families.

“Just financially, it’s difficult to uproot what we’ve set up,” Josie’s dad, Eric, said.

They’ve owned their home in St. Augustine for a long time. Eric recently started a new job. Josie’s mom, Sarah, works at a private college that offers a benefit that allows Josie and her older sister to get reduced tuition at some colleges around the country.

So her parents decided that, at least for now, Josie would go live with her aunt and uncle and they would stay behind.

The choice was devastating.

“It was just terror in my heart, like you could just feel that cold burst in my chest just going all throughout my body,” said Sarah. “Josie is part of everything I do.”

Josie will finish her sophomore year in Rhode Island before returning to St. Augustine for summer break. Her family sees it as a trial run for what could be years of separation.

One night before Josie left, she invited friends over for a going-away party. The teens played a dance video game, laughing as they performed a hip-hop routine.

Sarah brought out a Black Forest cake. “We love you Josie” was piped in frosting along the platter, framed by two hearts.

It was a simple but powerful send-off from the support system Josie has relied on in Florida. A few days later, she and her mom flew north to get Josie settled. Leaving her daughter in Rhode Island was “agony,” Sarah said.

“I was a mess,” she said. “I cried the whole way to the airport. I just felt I was going the wrong way.”

Sarah is still adjusting to life without Josie at home, but they talk every day. And Josie is getting used to her new environment. Her aunt and uncle have been great, she said, and she’s making friends at school.

Her new school is a little smaller than her old one and in a community that feels more liberal-minded, the family said. Josie said she loves seeing pride flags in the halls and plans to join the Gender and Sexuality Alliance Club. It all feels like a “bombardment of support.”

“It was just, like, such a shock to me — like, not a bad shock, but, like, just shocked that this is how schools can be,” Josie said. “It’s just that Florida’s choosing not to be like that.”

DeSantis’ office did not respond to several requests for comment to address concerns of families like Josie’s.

Since Josie moved to Rhode Island in April, DeSantis has signed four bills that would curb health care and gender expression of trans people.

Josie’s parents said they’ll keep their pride flag waving in the front yard and advocate for equality while she’s away.

Josie said she thinks about the trans kids who can’t leave and urged them not to give up hope. But right now, she needs to move on.

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

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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This story can be republished for free (details).

SACRAMENTO, Calif. — One of the country’s richest hospitals, which caters to Hollywood elites, accepted nearly $28 million last year from an unusual source: a charity that siphons money from other California hospitals, many of which serve the state’s poorest residents.

Cedars-Sinai Health System in Los Angeles secured the grant under California’s recession-era financing scheme that allows wealthy hospitals to take valuable health care tax money from poorer ones. Hospitals across the state agreed in 2009 to the arrangement in order to tap billions more per year in taxpayer dollars to support the state’s Medicaid program, called Medi-Cal.

Now, some of those hospitals serving a greater share of Medi-Cal patients are in dire financial need and face cutbacks and potential closures. But instead of asking for help for only those at greatest risk, California’s powerful hospital industry is putting the squeeze on Gov. Gavin Newsom and fellow Democratic lawmakers for an unprecedented bailout. And they are doing it even as the state faces a nearly $32 billion budget deficit.

Hospitals argue that to avert a crisis, they need an emergency infusion of $1.5 billion. They also want a steady annual stream of new health care tax money despite already having their own dedicated tax intended to support struggling facilities that serve a large percentage of the state’s low-income people, such as Madera Community Hospital in the Central Valley, which closed earlier this year.

Ads by the California Hospital Association paint a scary picture: “1 in 5 Hospitals are at risk of closure.” Yet another warns, “Health care that millions rely on is at risk.” Those claims are being repeated by state lawmakers as they debate financial rescue for hospitals.

But a KFF Health News analysis of state data revealed that despite increased labor costs and inflation, many California hospitals have been profitable in recent years. The industry earned roughly $131 billion last year in patient revenue, a key indicator of profitability — $7.3 billion more than the previous year. After factoring in rising costs, the industry still turned a profit of about $207 million last year. State figures show the industry reaped $9.2 billion in patient revenue in 2021, partly a reflection of big swings in the stock market.

Leading health care finance experts and former state officials are urging Newsom and lawmakers to resist the industry’s fear tactics, saying that, even though hospitals are still reeling from the covid-19 pandemic, many have plush financial reserves.

“They are big fans of these giant bailouts, where the relatively rich hospitals benefit as well as the ones who really need it,” said Glenn Melnick, a health economist at the University of Southern California. “A big chunk of the hospitals, even if they’re losing money, don’t need taxpayer money to help them through this crisis.”

Melnick and others who have analyzed the financial state of California hospitals say a sliver of California’s 368 general hospitals are in crisis and that relief should be given only to those that can show they are in immediate peril. Many hospitals in underserved and rural communities are struggling financially, in part because they have failed to attract enough patients with private insurance. And the cost of providing care to lower-income patients who rely on Medi-Cal hasn’t kept pace with government reimbursement rates.

But low Medi-Cal rates aren’t necessarily a predictor of financial disaster, according to a report released Thursday by the California Health Care Foundation. (KFF Health News publishes California Healthline, which is an editorially independent service of the California Health Care Foundation.)

Health economists found that hospitals “with the lowest margins were no more dependent on Medi-Cal or Medicare than the average California hospital.” And many cash-strapped hospitals may be sitting on enormous wealth, an indication they don’t necessarily need more taxpayer money.

“Most of the facilities that have negative margins are a part of larger systems, which suggests that they have the underlying wealth of those systems to stabilize them,” said Kristof Stremikis, director of market analysis and insight for the foundation.

Carmela Coyle, the influential leader of the state hospital lobby, said California’s hospitals are in the worst crisis they’ve faced in recent history, largely because the state reimburses providers just 74 cents on the dollar to care for Medi-Cal patients.

“You have these underserved communities in the Central Valley, where a hospital comes in, they’re doing their best, and those underserved individuals are not reimbursed the same as everybody else,” Coyle told KFF Health News. “The real underlying issue here is government underfunding.”

But Coyle isn’t disclosing the full picture. Experts agree that reimbursement rates in Medi-Cal — money provided to doctors, clinics, and hospitals for taking care of low-income patients — are too low to cover the actual cost of care. Yet the state and federal government give billions in bonus and incentive payments that can actually result in higher reimbursements and even profits.

After Madera Community Hospital cut off services and shuttered, Coyle warned that it was a “canary in the coal mine” for other hospitals unable to make ends meet because of its high proportion of low-income patients and reliance on government payments. But the hospital actually made nearly $15 million from Medi-Cal in 2021, KFF Health News has gleaned from state hospital financial records.

The overarching problem, according to emails obtained by KFF Health News, was an inability to demand higher payments from commercial health insurance companies, as well as attract their patients — 70% of whom sought care outside Madera County.

The hospital “does not have the ability to negotiate competitive rates on its own,” according to an email last June to the California attorney general’s office from representatives of Trinity Health, a national Catholic health system, which backed off from acquiring the hospital.

The Madera hospital’s CEO, Karen Paolinelli, and other hospital leaders made another last-ditch effort to keep its doors open: They asked for an advance payment of their hospital tax revenue — money distributed through health insurance plans and the state. The payment they sought was from the Hospital Quality Assurance Fee, which allows hospitals to tax themselves to draw in federal money for Medi-Cal. Adopted in California in 2009 and later approved by voters through a ballot initiative, the tax brought in $8.4 billion last year.

“We did ask before we closed to get paid some of the provider money owed to us,” Paolinelli said. “But we were not successful.”

She said the hospital needed $5 million to remain open and couldn’t secure funding in time.

Under the hospital tax revenue, the money is spread across California hospitals, but the system is designed to protect the rich hospitals and essentially help them avoid industry taxes.

Hospitals with a greater share of low-income patients pay a higher tax than wealthier systems that don’t serve as many poor people. However, they benefit handsomely, ultimately increasing how much they are paid to care for Medi-Cal patients. Then those hospitals give up a portion of their tax money to a charity that funnels it to better-performing hospitals in exchange for their political support for the hospital tax.

“The winner hospitals contribute money to a fund that is used to distribute money to the loser hospitals,” said Elaine Batchlor, CEO of MLK Community Health, which is asking for financial help because roughly 70% of its patients are on Medi-Cal. “No hospital loses by being a part of it. If you were going to lose money, you’d be against it.”

The transactions are routed through the California Health Foundation and Trust, the charity operated by the leadership of the California Hospital Association.

For example, Cedars-Sinai paid nearly $172 million in taxes in 2022, eclipsing the $151 million it got back in additional Medi-Cal dollars. To make up for the loss, it secured the nearly $28 million in grant revenue — earning nearly $6.9 million from the program, its commissioned tax audit shows.

Cedars-Sinai spokesperson Duke Helfand acknowledged the benefit from the taxing scheme but said the health system effectively subsidizes Medi-Cal enrollees and incurs losses of more than $180 million annually serving those low-income patients. “Over the years, our teams at Cedars-Sinai have effectively managed our financial resources, enabling us to provide exceptional patient care,” Helfand said.

By comparison, the faith-based Adventist Health, which serves more poor people and operates roughly two dozen hospitals in California, Oregon, and Hawaii, paid $148 million in taxes in 2022 and reaped $401 million in additional Medi-Cal dollars through the program, according to its independent tax audit. It then contributed $3 million of that money to the charity.

These sorts of financing arrangements are under federal scrutiny. Officials with the Centers for Medicare & Medicaid Services have blasted “hold harmless” deals that can result in wealthier hospitals receiving enough money back that they ultimately wind up paying little or no tax at all.

“A health care-related tax cannot have a hold harmless provision that guarantees to return all or a portion of the tax back to the taxpayer,” Daniel Tsai, deputy administrator and director for the federal Medicaid agency, wrote in February.

Dave Regan, president of Service Employees International Union-United Healthcare Workers West, which represents hospital workers, has long lambasted California’s scheme as a ploy that lets wealthy hospitals siphon valuable health care dollars from smaller, rural hospitals that need more support for Medi-Cal patients.

“We believe the policies and practices of the hospital industry, in large part, contribute to the problems that Madera faced,” Regan said. “The hospital industry is richer than it’s ever been — and it’s being disingenuous, trying to get the public to fork over more money at a time when they have more money than they’ve ever had.”

California Hospital Association spokesperson David Simon defended the charity, saying it helps “hospitals provide health care services despite losses” from the tax.

Hospital leaders say exorbitant costs and inflation have created extreme financial woes. Last year, California’s hospitals paid at least $10 billion more for labor, supplies, and other expenses than the year before, according to state hospital finance data. And overall, they saw substantially smaller investment gains, reporting nearly $119 million in non-operating revenue compared with $6 billion the year before — a big blow to their financial cushion to ensure patient care.

The industry points out 200 hospitals had negative operating margins last year, yet KFF Health News found that, even before the pandemic, about 160 hospitals reported losing money in their operating budgets. Experts say the finding underscores the reality that hospitals operate on slim margins.

And, credit ratings agencies have recently upgraded the bonds of a number of hospitals and health systems, including Sutter Health in Northern California and Loma Linda University Medical Center in San Bernardino County.

“We just upgraded Sutter like two weeks ago, so it would be very hard-pressed, for me, to look at California and say California is looking bad,” said Kevin Holloran, a senior director at Fitch Ratings.

Some Democratic lawmakers agree that not all hospitals need a bailout. Instead, they favor targeted relief such as a $150 million loan program that Newsom signed into law earlier this month to help struggling hospitals.

“I’m not a big fan of writing everybody a check,” said Democratic Assemblymember Jim Wood, chair of the Health Committee, who says hospitals ought to be more transparent about their finances before state taxpayers give them any more money. “If you’re a hospital system that’s doing well, I don’t believe you should be getting any additional resources from the state.”

KFF Health News senior correspondent Bernard J. Wolfson contributed to this report.

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 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Bozeman, Montana. — Sara Young empacó una maleta con artículos esenciales, agarró a sus hijos y huyó de su hogar a un refugio: una casa vieja pintada de verde, camuflada en un vecindario en esta ciudad del suroeste de Montana.

La casa no parecía un refugio para víctimas de violencia doméstica; estaba escondida a simple vista. Young no podía darle la dirección a nadie. La clandestinidad le daba una sensación de seguridad. Pero para su compañera de cuarto, una madre joven, era difícil cuidar a su bebé sin su familia allí para ayudarla.

Algunas residentes no podían ir a trabajar porque no tenían auto. Varias intentaban escaparse a la noche para alejarse por un momento de los toques de queda, las ventanas cerradas y los sistemas de seguridad.

“Estábamos ahí porque necesitábamos estar protegidas”, dijo Young. “Para mí, era un lugar cómodo. Para otras, era como estar en una prisión”.

Por mucho tiempo, el estándar para este tipo de refugios, también llamados casas de acogida, ha sido alojar a las víctimas de violencia doméstica en casas ocultas con direcciones secretas.

Este modelo surge de la idea de que la clandestinidad protege a las sobrevivientes de sus abusadores. Pero los directores de estos refugios han dicho que cada vez es más difícil mantener ocultas las ubicaciones, y que esta estrategia puede aislar a las víctimas.

Ahora, algunos refugios están transicionando a un modelo abierto. Esta primavera, Haven, una organización sin fines de lucro de Bozeman, terminó la construcción de un campus que reemplazó a la casa verde, ubicado a minutos de una carretera principal que conduce a la ciudad. El nombre de la organización está escrito en letras llamativas al costado del nuevo edificio.

Hay espacio para un jardín comunitario, clases de yoga y un lugar para que las residentes reciban a sus amigos. Está a poca distancia a pie de supermercados y una escuela primaria, y bordea un parque urbano que es ideal para pasear perros o pescar.

Erica Coyle, directora ejecutiva de Haven, dijo que por muchos años el antiguo refugio de la organización fue un secreto no tan secreto en la ciudad de más de 54,000 personas.

“Nuestro trabajo no es rescatar a un sobreviviente y mantenerlo escondido”, dijo Coyle. “Lo que debemos estar haciendo, como comunidades y como movimiento social, es escuchar a los sobrevivientes cuando nos dicen: ‘El aislamiento de los refugios es un gran obstáculo para mí’”.

Estos cambios en el modelo de los refugios para víctimas de violencia doméstica se están expandiendo por todo el país. En los últimos años, organizaciones en Utah y Colorado construyeron refugios públicos que proveen recursos in situ, como servicios legales.

Una organización de asistencia a víctimas en la ciudad de Nueva York ha pasado años sentando las bases para crear refugios que permitan a los residentes invitar a amigos y familiares.

Los estados rurales, como Montana, parecen estar adoptando el modelo de los refugios abiertos más rápido que las zonas urbanas. Kelsen Young, directora ejecutiva de la organización Montana Coalition Against Domestic and Sexual Violence, explicó que es mucho más difícil mantener un lugar secreto en pequeños pueblos donde todos se conocen.

Los refugios de Missoula y Helena adoptaron el modelo abierto hace años y, según Young, ya están en marcha planes para hacer lo mismo en otras ciudades.

Gina Boesdorfer, directora ejecutiva del Friendship Center en Helena, dijo que los refugios ocultos obligan a las sobrevivientes a permanecer escondidas en vez de apoyarlos en sus propias comunidades y permitir que sigan sus rutinas cotidianas.

“Demuestra claramente la falta de sistemas de apoyo y recursos en las comunidades”, dijo Boesdorfer. “[Los refugios ocultos] siguen colocando la carga en las víctimas y no en los abusadores”.

No hay un registro de cuántos refugios han adoptado el modelo abierto. Lisa Goodman, psicóloga y profesora del Boston College que estudia cómo mejorar los sistemas de apoyo para sobrevivientes de violencia, dijo que la definición de “abierto” en referencia a los refugios varía.

Algunos simplemente dejaron de tratar de ocultar sus direcciones, permitiendo a los residentes obtener transporte para ir a trabajar mientras otros espacios están fuera de los límites. Otros refugios permiten a los residentes recibir visitas u ofrecen espacios comunitarios para reuniones.

“Tal como solía ser el movimiento contra la violencia doméstica, [estos cambios] están empezando desde abajo”, dijo Goodman.

Los primeros refugios fueron establecidos por mujeres que acogían a otras mujeres en sus casas. A partir de la década de 1970, se empezaron a construir refugios bajo el supuesto de que los lugares secretos eran más seguros.

Pero a medida que fueron creciendo para alojar a más personas, los refugios ocultos se volvieron cada vez menos prácticos, ya que muchas sobrevivientes trabajan y tienen hijos que van a la escuela. Por no mencionar el desafío que presentan los avances tecnológicos que permiten rastrear la ubicación de un teléfono celular por GPS, por ejemplo.Goodman dijo que no existe un registro nacional de refugios que estén considerando el modelo abierto. Cada refugio debe tomar en cuenta preguntas importantes, incluyendo cómo evaluar a las visitas para asegurarse de que no sean una amenaza; cómo proteger a una sobreviviente cuyo abusador todavía anda suelto, y cómo mantener un equilibrio entre la independencia y la privacidad de las que quieren mantenerla.

Pero después de décadas de valorar la clandestinidad, salir a la luz pública no siempre es fácil.

En 2021, un refugio anteriormente escondido en el valle de Vail de Colorado — un grupo de pueblos rurales ocultos entre las mejores estaciones de esquí del mundo — abrió una nueva sede. La propiedad comprende pequeños apartamentos y servicios que ofrecen recursos para la salud mental, asistencia legal y ayuda con asuntos de vivienda, para residentes y no residentes. 

Sheri Mintz, directora ejecutiva de Bright Future Foundation, propietaria del refugio, dijo que tomó tiempo lograr que la gente aceptara el nuevo modelo. Algunos activistas en contra de la violencia doméstica temían que la transición pusiera en riesgo la seguridad de las sobrevivientes.

Respondiendo a estas preocupaciones, la organización actualizó el sistema de seguridad del nuevo refugio. Se hicieron recorridos de las instalaciones con policías para verificar que el lugar fuera seguro y crear planes de respuesta en caso de cualquier problemas de seguridad.

“Hasta ahora, no hemos tenido ningún incidente grave”, dijo Mintz. “Siempre hemos tenido clientes que pueden ser víctimas de acoso. No veo que eso haya aumentado o cambiado de alguna manera desde que estamos en este refugio público”.

En la ciudad de Nueva York, Olga Rodríguez-Vidal, vicepresidenta de refugios para víctimas de violencia doméstica de Safe Horizon, dijo que su organización todavía está trabajando para que sus patrocinadores apoyen el modelo abierto.

Los directores de Safe Horizon quieren tener una combinación de viviendas de emergencia privadas para las personas que están saliendo de una crisis y otras opciones para los que estén en alojamientos provisionales y quieran recibir visitas.

“Esto es muy nuevo e innovador y tal vez nos da un poco de miedo”, dijo Rodríguez-Vidal.

En Bozeman, Haven tiene dos edificios en su nuevo campus. El primero es un centro de recursos con oficinas para empleados, servicios para clientes y espacio para eventos comunitarios. Hay cámaras conectadas a un sistema de seguridad que pueden identificar las placas de abusadores conocidos, y hay controles de seguridad con cada visitante.

El nuevo sitio permite tener sistemas de seguridad mucho más avanzados que los que se podían usar cuando la organización estaba tratando de “camuflarse” en el vecindario, dijo Coyle.

Por dentro, el edificio está diseñado para que las personas que han experimentado traumas se sientan seguras. Cada ventana tiene una vista de lo que serán los jardines de la propiedad. Una parte del edificio incluye salas de terapia para adultos. Una de ellas tiene una vista a la sala de juegos para niños, así los padres pueden recibir ayuda sabiendo que sus hijos están a salvo.

La vivienda de Haven, a poca distancia a pie del centro principal, está fuera del alcance de personas que no trabajan o residen allí, lo cual permite mantener la privacidad de los residentes. Las sobrevivientes eligen cuándo y si quieren participar en eventos organizados en el edificio de al lado. El sendero de entrada a la vivienda de las residentes está cercado y es privado.

Sara Young es una de las sobrevivientes que opinó sobre el diseño del nuevo refugio de Haven y dijo que en general está contenta con los cambios. Le alegra que los residentes tendrán más espacio que el que ella tenía en su refugio, y que habrá más acceso a los distintos servicios que ofrece la organización.

Pero a Young no termina de convencerle la idea de un refugio público. En el refugio que la acogió,  se sentía segura sabiendo que la dirección no era pública y que su ex no la conseguiría. Le gustaba que los vecinos del refugio no sabían por qué estaba allí; no quería sentirse juzgada por haber estado en una relación abusiva. 

Pero Young reconoce que el hecho de tener una dirección pública no la habría disuadido de alojarse en el refugio.

“Estaba desesperada, estoy segura de que habría ido igual”, dijo Young, y agregó que no tendría la estabilidad que siente hoy en día sin el apoyo y la ayuda que recibió en el refugio. “Pero no quería que nadie lo supiera”.

Por otra parte, dijo Young, tal vez el modelo del refugio público contribuya a reducir el estigma que ella temía y ayude a que más personas entiendan que cualquier persona puede encontrarse en una relación abusiva, y qué hacer en esos casos. 

Young estará pendiente de cómo el modelo sigue desarrollándose.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Cuando los antepasados de John Mestas se mudaron a Colorado hace más de 100 años para criar ovejas en el Valle de San Luis, “llegaron al paraíso”, contó.

“Había tanta agua que pensaron que nunca se acabaría”, dijo Mestas refiriéndose a la región agrícola en la cabecera del río Grande.

Ahora, décadas de sequía impulsada por el cambio climático, combinada con la sobre explotación de los acuíferos, están dejando al valle desesperadamente seco, y parece estar intensificando los niveles de metales pesados en el agua potable.

Al igual que un tercio de las personas que viven en este desierto alpino de gran altitud, Mestas depende de un pozo privado que extrae agua de un acuífero para beber. Y, al igual que muchos agricultores de la zona, usa la misma fuente para regar la alfalfa que alimenta a sus 550 vacas.

“Aquí, el agua lo es todo”, dijo.

Mestas, de 71 años, ahora es uno de los cientos de propietarios de pozos que participan en un estudio que aborda la pregunta: ¿Cómo afecta la sequía no solo a la cantidad, sino también a la calidad del agua?

El estudio, dirigido por Kathy James, profesora asociada en la Escuela de Salud Pública de Colorado, se centra en el arsénico en los pozos privados de agua potable. El arsénico, un carcinógeno que se encuentra naturalmente en el suelo, ha estado apareciendo en niveles crecientes en el agua potable del valle, según James.

En California, México y Vietnam, las investigaciones han relacionado el aumento de los niveles de arsénico en el agua subterránea con la sequía y la sobre explotación de los acuíferos.

A medida que el oeste lucha contra una mega sequía que ha durado más de dos décadas y los estados corren el riesgo de recortes en el agua del menguante río Colorado, el Valle de San Luis ofrece pistas sobre lo que el futuro puede deparar.

A nivel nacional, alrededor de 40 millones de personas dependen de pozos domésticos, estimó Melissa Lombard, investigadora en hidráulica del U.S. Geological Survey. Nevada, Arizona y Maine tienen el mayor porcentaje de usuarios de pozos domésticos —que oscilan entre aproximadamente un cuarto y una quinta parte de estos usuarios—, que utilizan agua con niveles elevados de arsénico, según encontró en un otro estudio.

Durante la sequía, el número de personas en los Estados Unidos continental expuestas a niveles elevados de arsénico en pozos domésticos podría aumentar de aproximadamente 2,7 millones a 4,1 millones, estimó Lombard utilizando modelos estadísticos.

Se ha comprobado que el arsénico afecta la salud a lo largo de la vida, comenzando con los espermatozoides y los óvulos, explicó James. Incluso una pequeña exposición, acumulada a lo largo de la vida de una persona, es suficiente para causar problemas de salud, agregó.

En un estudio anterior en el valle, James encontró que la exposición de por vida a niveles bajos de arsénico inorgánico en el agua potable, entre 10 y 100 microgramos por litro (µg/L), estuvo relacionada con un mayor riesgo de enfermedad coronaria. Otras investigaciones han vinculado la exposición crónica a niveles bajos de arsénico con hipertensión, diabetes y cáncer.

Las mujeres embarazadas y los niños corren un mayor riesgo de sufrir daños.

La Organización Mundial de la Salud establece el límite recomendado de arsénico en el agua potable en 10 µg/L, que también es el estándar de los Estados Unidos para los suministros públicos de agua. Pero las investigaciones han demostrado que, incluso a 5 µg/L, el arsénico está relacionado con tasas más altas de lesiones en la piel.

“Creo que es un problema del que mucha gente no está consciente”, dijo Lombard. “El cambio climático probablemente afectará la calidad del agua”, dijo, pero se necesita más investigación para comprender cómo y por qué.

Un foco de esperanza

El Valle de San Luis, que ha sido sede de una gran cantidad de investigación e innovación, es el lugar ideal para explorar esas preguntas, y posibles soluciones.

Conocido por sus impresionantes vistas montañosas y la cercanía al Parque y Reserva Nacional Great Sand Dunes, el valle abarca una región aproximadamente del tamaño de Massachusetts, convirtiéndolo en el valle alpino más grande de América del Norte.

Rico en herencia indígena, mexicana y española, contiene 500,000 acres de tierra de riego que producen papas, alfalfa para forraje y cebada para la cerveza de Coors. Es hogar de casi 50,000 personas, muchas de ellas trabajadores agrícolas y aproximadamente la mitad de ellas hispanas.

También es un lugar desafiante para vivir: los condados aquí se encuentran entre los más pobres del estado, y las tasas de diabetes, enfermedad renal y depresión son altas.

Dado que llueve muy poco, aproximadamente 7 pulgadas al año en promedio, los agricultores dependen de dos grandes acuíferos y de las cabeceras del río Grande, que continúa hacia México. El deshielo de las imponentes cordilleras de Sangre de Cristo y San Juan recarga el suministro cada primavera.

Sin embargo, a medida que el clima se calienta, hay menos nieve y el agua se evapora más rápidamente de lo normal tanto del suelo como de los cultivos. “Esta comunidad entera, esta cultura, se construyó en torno a la agricultura de riego”, dijo Cleave Simpson, senador estatal de Alamosa, republicano y agricultor de cuarta generación.

Pero desde 2002, el acuífero no confinado del valle ha perdido 1 millón de acres-pie de agua, o suficiente para cubrir 1 millón de acres de tierra con un pie de agua de profundidad, debido a la sequía persistente y el uso excesivo. Ahora las comunidades del valle enfrentan una fecha límite para reponer el acuífero, o enfrentar el cierre estatal de cientos de pozos de riego.

“Estamos una década adelante de lo que está sucediendo en el resto de Colorado” debido a la intensidad de la escasez de agua, dijo Simpson, quien administra el Río Grande Water Conservation District.

“Esto ya no es una sequía, esto es realmente la desertificación del Oeste“, dijo Simpson. Así es como los científicos describen una tendencia a largo plazo hacia la sequedad y aridez persistentes que solo puede detenerse abordando el cambio climático causado por los humanos.

James, quien es epidemióloga e ingeniera, ha estado estudiando las conexiones entre el clima y la salud en el valle durante los últimos 15 años. Descubrió que durante las tormentas de polvo en el Valle de San Luis, que se han vuelto más frecuentes, más personas llegan al hospital por ataques de asma. Y ha encuestado a los trabajadores agrícolas sobre cómo la sequía está afectando su salud mental.

En el estudio de los pozos domésticos, James se está centrando en el arsénico, que según dijo ha ido aumentando gradualmente en los pozos de agua potable del valle en los últimos 50 años. Los niveles de arsénico en el agua subterránea del Valle de San Luis son “considerablemente más altos que en muchas otras áreas de los Estados Unidos”, según James. También está investigando las disparidades étnicas, ya que un estudio mostró que los adultos hispanos tenían niveles más altos de arsénico en su orina que los adultos blancos no hispanos. (Las personas hispanas pueden ser de cualquier raza o combinación de razas).

Ahora, James tiene como objetivo analizar 1,000 pozos privados en el valle para explorar las conexiones entre la sequía, la calidad del agua y la salud. Hasta ahora, dijo que una pequeña proporción de los pozos muestra niveles elevados de metales pesados, incluyendo arsénico, uranio, tungsteno y manganeso, que se encuentran naturalmente en el suelo.

A diferencia de los suministros públicos de agua, los pozos domésticos privados no están regulados y pueden pasar años sin ser analizados. James ofrece pruebas de agua gratuitas y consultas sobre los resultados a los participantes. En el condado de Conejos, la hija de John Mestas, Angie Mestas, aprovechó la oportunidad de hacer una prueba gratuita, que costaría $195 en un laboratorio local.

Angie, maestra de 35 años, dijo que utilizó los ahorros de toda una vida para perforar un pozo de agua potable en su terreno, un campo abierto de hierba chamisa con vistas panorámicas a las Colinas de San Luis. Pero no beberá de este pozo hasta que se realicen pruebas de arsénico y E. coli, que son comunes en la zona.

Mientras espera los resultados de las pruebas, ha estado llevando barriles de agua de 5 galones desde la casa de su padre cada vez que pasa el fin de semana en su nueva carpa.

Amenaza sin olor ni color

Mientras tanto, Julie Zahringer, cuya familia se estableció en el valle desde España hace casi 400 años, ha estado observando las tendencias de calidad del agua de primera mano.

Zahringer, de 47 años, creció conduciendo un tractor en el rancho de su abuelo cerca de San Luis, la ciudad más antigua de Colorado, y pasó tiempo en el laboratorio con su madre, que es científica.

Como química y directora de laboratorio de SDC Laboratory en Alamosa, Zahringer analiza el agua potable privada y pública en el valle. Estimó que el 25% de los pozos privados analizados por su laboratorio muestran niveles elevados de arsénico. “Es incoloro, es inodoro”, dijo Zahringer. “La mayoría de las familias no saben si están bebiendo arsénico”.

Para ella, el vínculo con el clima parece claro: durante los períodos de sequía, un pozo que normalmente tiene alrededor de 10 µg/L de arsénico puede fácilmente duplicar o triplicar su concentración, dijo. Una posible razón es que hay menos agua para diluir los contaminantes naturales del suelo, aunque también intervienen otros factores.

Dijo que los niveles de arsénico solían ser bastante estables, pero después de 20 años de sequía, fluctúan de manera descontrolada.

“Ahora, cada vez más rápido, veo el mismo pozo que analicé hace tres años, y ni siquiera parece el mismo” porque los niveles de contaminantes han aumentado tanto, dijo Zahringer, quien también es miembro de la Comisión de Control de Calidad del Agua de Colorado.

En su propio pozo de agua potable, el nivel de arsénico aumentó de 13 a 20 µg/L este año, dijo.

Las observaciones de Zahringer son importantes historias de primera mano. James tiene como objetivo explorar, en un estudio científico riguroso con una muestra representativa de pozos y datos geoquímicos extensos, la prevalencia del arsénico y su conexión con la sequía.

La investigación todavía se encuentra en etapas iniciales, pero los científicos tienen varias hipótesis sobre cómo la sequía podría afectar el arsénico en el agua potable. En el Valle de San Joaquín, un importante centro agrícola en California, la investigación liderada por el experto en hidráulica Ryan Smith relacionó el aumento de arsénico en las aguas subterráneas con el “hundimiento del terreno”, un fenómeno documentado por primera vez en Vietnam.

El hundimiento del terreno, cuando el suelo se hunde debido a la sobreexplotación de los acuíferos, parece liberar arsénico de la arcilla hacia el agua, dijo Smith, profesor asistente de la Universidad Estatal de Colorado. En California, la sobreexplotación estaba fuertemente correlacionada con la sequía, agregó.

Sin embargo, otros factores, como la profundidad de un pozo, también juegan un papel: otro estudio del mismo sistema de acuíferos en California encontró que mientras el arsénico aumentaba en las aguas subterráneas más profundas, disminuía en las aguas más superficiales debido, en parte, a la oxidación.

Smith está trabajando ahora con James en el estudio del Valle de San Luis, donde espera que una gran cantidad de datos geoquímicos brinden más respuestas. Mientras tanto, los líderes comunitarios en el valle se están adaptando de formas impresionantes e innovadoras, dijo James.

Zahringer dijo que si el arsénico aparece en un pozo privado, anima a los clientes a instalar un sistema de filtración de agua por ósmosis inversa en el fregadero de la cocina. El equipo cuesta alrededor de $300 con un proveedor externo, aunque los filtros que cuestan menos de $50 pueden necesitar cambiarse cada seis a 18 meses, dijo.

Aquellas personas que tratan su agua para eliminar el arsénico deben seguir realizando pruebas cada seis meses para asegurarse de que los filtros sean efectivos, agregó Zahringer. SDC Laboratory ofrece una prueba de arsénico por $25.

“A las personas no les gusta analizar el agua porque sabe bien y sus abuelos la bebían”, dijo. Pero “la solución es tan fácil”.

Una campaña de calidad del agua en 2009, liderada por el Consejo del Ecosistema del Valle de San Luis, también encontró niveles elevados de arsénico en los pozos a lo largo del valle. Como parte de sus actividades, la organización sin fines de lucro trabajó con agentes inmobiliarios para asegurarse de que los pozos domésticos sean analizados antes de que alguien compra una casa.

Eso es lo que hizo Sally Wier cuando compró una casa hace cinco años en una parcela de 8 acres en el condado de Rio Grande, rodeada de campos de cebada y alfalfa. La primera vez que probó su pozo, el nivel de arsénico era de 47 µg/L, casi cinco veces más del límite establecido por la Agencia de Protección Ambiental (EPA). Wier instaló un sistema de filtración de agua por ósmosis inversa, pero dijo que el nivel de arsénico aumenta antes de que cambie los filtros cada pocos meses.

“Me pone muy ansiosa”, dijo Wier, de 38 años. “Probablemente estoy ingiriendo arsénico. Eso no es bueno para la salud a largo plazo”.

Wier es una de muchas personas que trabajan en soluciones innovadoras para la escasez de agua. Como gerente de proyectos de conservación en Colorado Open Lands, trabajó en un acuerdo mediante el cual se le pagó a un agricultor local, Ron Bowman, para que dejara de regar su granja de 1,800 acres. Según Wier, este acuerdo marca la primera vez en el país que se utiliza un acuerdo de uso de conservación para salvar agua subterránea y reponer acuíferos.

Canalizando dinero hacia una solución

En el condado de Costilla, el Move Mountains Youth Project ha estado pagando a agricultores locales, a través de una subvención gubernamental, para que conviertan una parte de sus tierras en cultivos de vegetales en lugar de cultivos de alfalfa que requieren mucha agua.

Los agricultores luego entrenan a los jóvenes para cultivar brócoli, espinaca y frijoles bolita, que se venden en una tienda de comestibles local. El proyecto tiene como objetivo fomentar la próxima generación de agricultores y “combatir la diabetes” al proporcionar alimentos cultivados localmente, dijo la directora ejecutiva Shirley Romero Otero.

Su grupo trabajó con tres agricultores el verano pasado y planea hacerlo con siete esta temporada, si hay suficiente agua disponible, contó.

En otro esfuerzo, agricultores como los Mestas se están gravando a sí mismos para extraer agua de sus propios pozos de riego. Y Simpson, del Distrito de Conservación del Agua del Río Grande, recientemente aseguró $30 millones en fondos federales para apoyar la conservación del agua. El plan incluye pagar a los agricultores $3,000 por acre-pie de agua para retirar permanentemente sus pozos de riego.

Dado que el arsénico no se limita a los pozos privados, también han respondido las agencias públicas: la ciudad de Alamosa construyó una nueva planta de tratamiento de agua en 2008 para cumplir con los estándares federales de arsénico.

En 2020, el estado de Colorado demandó a una granja de hongos en Alamosa por exponer a sus trabajadores al arsénico presente en el agua de grifo.

En la comunidad de casas móviles High Valley Park en el condado de Alamosa, un pozo que abastece a 85 personas ha excedido los niveles legales de arsénico desde 2006, cuando EPA endureció su estándar de 50 a 10 µg/L. En la prueba más reciente en febrero, la concentración fue de 19 µg/L.

En una tarde de abril, cuatro niños saltaban en un trampolín y se perseguían unos a otros alrededor de un árbol. “Tío, tengo sed y no quedan botellas de agua”, dijo uno de los niños, sin aliento.

El pozo abastece a 28 hogares. Sin embargo, los inquilinos de cinco viviendas han afirmado que no han estado bebiendo el agua durante años, no por el arsénico, del cual algunos no estaban conscientes, sino porque el agua a menudo sale de color marrón.

Eduardo Rodríguez, de 29 años, quien trabaja en excavación, dijo que compra dos cajas de botellas de agua cada semana para su esposa y sus cinco hijos.

“Esto debe arreglarse”, afirmó.

“El agua es terrible”, coincidió Craig Nelson, de 51 años, quien ha vivido en el parque de casas móviles durante dos años. “No se puede tomar”. Debido a que el pozo abastece al menos a 25 personas, está regulado por el estado.

El propietario del terreno, Rob Treat, de Salida, compró la propiedad en febrero de 2022 por casi medio millón de dólares. Cumplir con los estándares federales en cuanto al contenido de arsénico ha sido difícil, afirmó, porque sus niveles fluctúan cuando los agricultores cercanos extraen agua del acuífero para regar sus cultivos.

Treat estaba utilizando cloro para convertir un tipo de arsénico en una forma más tratable. Sin embargo, si agregaba demasiado cloro, esto creaba subproductos tóxicos, lo cual también llamó la atención de los reguladores. Bajo presión del estado, comenzó a mejorar el sistema de tratamiento de agua en mayo, con un costo de $150,000. Para cubrir los gastos, planea aumentar el alquiler mensual de $250 a $300 por lote.

“Si el estado se mantuviera al margen”, se quejó, “podríamos proporcionar viviendas asequibles”.

Mientras tanto, John Mestas aún está esperando los resultados de su pozo de agua potable.

Cuando regresa de viajar para administrar su rebaño de ganado, “lo primero que hago cuando entro a la casa es beber dos vasos de agua”, dijo. “Eso es lo que extraño, mi agua y mis perros. Saltan sobre mí mientras tomo mi agua. No sé quién está más feliz, si yo bebiendo el agua o ellos saltando”.

Este artículo fue apoyado por The Water Desk, una iniciativa de periodismo independiente con sede en el Center for Environmental Journalism de la Universidad de Colorado-Boulder.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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