This story also ran on NBC News. See below.

West Virginia’s Public Employees Insurance Agency enrolls nearly 215,000 people — state workers, as well as their spouses and dependents. The new law, which will take effect June 10, will allow plan members who have been approved for a course of treatment to pursue an alternative, medically appropriate treatment of equal or lesser value without the need for another approval from the state-based health plan.

“This legislation is rooted in a simple principle: if a treatment has already been approved, patients should be able to pursue a medically appropriate alternative without being forced to start the process over again — especially when it does not cost more,” Gov. Patrick Morrisey said in a statement after signing the bill into law on March 31.

“This is about common sense, compassion, and trusting patients and their doctors to make the best decisions for their care,” he said.

Delegate Laura Kimble, the Republican from Harrison County who introduced the legislation, told KFF Health News the measure offers “a rational solution” for patients facing “the most irrational and chaotic time of their lives.”

From Arizona to Rhode Island, at least half of all state legislatures have taken up bills this year related to prior authorization, a process that requires patients or their medical team to seek approval from an insurer before proceeding with care. These state efforts come as patients across the country await relief from prior authorization hurdles, as promised by dozens of major health insurers in a pledge announced by the Trump administration last year.

The West Virginia law was inspired by Eric Tennant, a coal-mining safety instructor from Bridgeport who died on Sept. 17 at age 58. In early 2025, the Public Employees Insurance Agency repeatedly denied him coverage of a $50,000 noninvasive cancer treatment, called histotripsy, that would have used ultrasound waves to target, and potentially shrink, the largest tumor in his liver. His family didn’t expect the procedure to eradicate the cancer, but they hoped it would buy him more time and improve his quality of life. The insurer said the procedure wasn’t medically necessary and that it was considered “experimental and investigational.”

Related coverage

After Series of Denials, His Insurer Approved Doctor-Recommended Cancer Care. It Was Too Late.

Eric Tennant’s doctors recommended histotripsy, which would target, and potentially destroy, a cancerous tumor in his liver. But by the time his insurer approved the treatment, Tennant was no longer considered a good candidate. He died in September. Read More

Becky Tennant, Eric’s widow, told members of a West Virginia House committee in late February that she submitted medical records, expert opinions, and data as part of several attempts to appeal the denial. She also reached out to “almost every one of our state representatives,” asking for help.

Nothing worked, she told lawmakers, until KFF Health News and NBC News got involved and posed questions to the Public Employees Insurance Agency about Eric’s case. Only then did the insurer reverse its decision and approve histotripsy, Tennant said.

“But by then, the delay had already done its damage,” she said.

Within one week of the reversal in late May, Eric Tennant was hospitalized. His health continued to decline, and by midsummer he was no longer considered a suitable candidate for the procedure. “The insurance company’s decision did not simply delay care. It closed doors,” his wife said.

Had the new law been in effect, Kimble said, Tennant could have undergone histotripsy without preapproval, because it was a less expensive alternative to chemotherapy, which his insurer had already authorized. The bill was passed unanimously by the state legislature in March.

U.S. health insurers argue that most prior authorization requests are quickly, if not instantly, approved. AHIP, the health insurance industry trade group, says prior authorization acts as an important guardrail in preventing potential harm to patients and reducing unnecessary health care costs. But denials and delays tend to affect patients who need expensive, time-sensitive care, studies have shown.

The practice has come under intense scrutiny in recent years, particularly after the fatal shooting of a health insurance executive in New York City in late 2024. Americans rank prior authorization as their biggest burden when it comes to getting health care, according to a poll published in February by KFF, a health information nonprofit that includes KFF Health News.

Samantha Knapp, a spokesperson for the West Virginia Department of Administration, would not answer questions about the law’s financial impact on the state. “We prefer to avoid any speculation at this time regarding potential impact or actions,” Knapp said.

In a fiscal note attached to the bill, Jason Haught, the Public Employees Insurance Agency’s chief financial officer, said the law would cost the agency an estimated $13 million annually and “cause member disruption.”

West Virginia isn’t an outlier in targeting prior authorization. By late 2025, 48 other states, in addition to the District of Columbia and Puerto Rico, already had some form of a prior authorization law — or laws — on the books, according to a report published in December by the National Association of Insurance Commissioners.

Many states have set up “gold carding” programs, which allow physicians with a track record of approvals to bypass prior authorization requirements. Some states establish a maximum number of days insurance companies are allowed to respond to requests, while others prohibit insurance companies from issuing retrospective denials after a service has already been preauthorized. There are also a crop of new state laws seeking to regulate the use of artificial intelligence in prior authorization decision-making.

Meanwhile, prior authorization bills introduced this year across the country, including in Kentucky, Missouri, and New Jersey, have been supported by politicians from both parties.

“Republicans in conservative states see health care as a vulnerability for the midterm elections, and so, unsurprisingly, you’ll see some action on this,” said Robert Hartwig, a clinical associate professor of risk management, insurance, and finance at the University of South Carolina. “They realize that they’re not really going to get much action at the federal level given the degree of gridlock we’ve already seen.”

Last summer, the Trump administration announced a pledge signed by dozens of health insurers vowing to reform prior authorization. The insurers promised to reduce the scope of claims that require preapproval, decrease wait times, and communicate with patients in clear language when denying a request.

Consumers, patient advocates, and medical providers have expressed skepticism that companies will follow through on their promises.

Becky Tennant is skeptical, too. That’s why she advocated for the West Virginia bill.

“Families should not have to beg, appeal, or go public just to access time-sensitive care,” she told lawmakers. Tennant, who sees the bill’s passage as bittersweet, said she thought her husband would have been proud.

During Eric’s final hospital stay, Tennant recalled, right before he was discharged to home hospice care, she asked him whether he wanted her to keep fighting to change the state agency’s prior authorization process.

“‘Well, you need to at least try to change it,’” she recalled her husband saying. “‘Because it’s not fair.’”

“I told him I would keep trying,” she said, “at least for a while. And so I am keeping that promise to him.”

—–

NBC News health and medical unit producer Jason Kane and correspondent Erin McLaughlin contributed to this report. 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 — the independent source for health policy research, polling, and journalism.

The post After Man’s Death Following Insurance Denials, West Virginia Tackles Prior Authorization appeared first on Medika Life.

Last winter, Amber Wingler started getting a series of increasingly urgent messages from the local hospital in Columbia, Missouri, letting her know her family’s health care might soon be upended.

MU Health Care, where most of her family’s doctors work, was mired in a contract dispute with Wingler’s health insurer, Anthem. The existing contract was set to expire.

Then, on March 31, Wingler received an email alerting her that the next day Anthem was dropping the hospital from its network. It left her reeling.

“I know that they go through contract negotiations all the time … but it just seemed like bureaucracy that wasn’t going to affect us. I’d never been pushed out-of-network like that before,” she said.  

The timing was awful.

The query: When a Missouri mom’s health insurance company couldn’t come to an agreement with her hospital, most of her doctors were suddenly out-of-network. She wondered how she would get her kids’ care covered or find new doctors. “For a family of five, … where do we even start?”

— Amber Wingler, 42, in Columbia, Missouri

Wingler’s 8-year-old daughter, Cora, had been having unexplained troubles with her gut. Waitlists to see various pediatric specialists to get a diagnosis, from gastroenterology to occupational therapy, were long — ranging from weeks to more than a year.

(In a statement, MU Health Care spokesperson Eric Maze said the health system works to make sure children with the most urgent needs are seen as quickly as possible.)

Suddenly, the specialist visits for Cora were out-of-network. At a few hundred bucks a piece, the out-of-pocket cost would have added up fast. The only other in-network pediatric specialists Wingler found were in St. Louis and Kansas City, both more than 120 miles away.

So Wingler delayed her daughter’s appointments for months while she tried to figure out what to do.

Nationwide, contract disputes are common, with more than 650 hospitals having public spats with an insurer since 2021. They could become even more common as hospitals brace for about $1 trillion in cuts to federal health care spending prescribed by President Donald Trump’s signature legislation signed into law in July.

Patients caught in a contract dispute have few good options. “There’s that old African proverb: that when two elephants fight, the grass gets trampled. And unfortunately, in these situations, oftentimes patients are grass,” said Caitlin Donovan, a senior director at the Patient Advocate Foundation, a nonprofit that helps people who are having trouble accessing health care.

If you’re feeling trampled by a contract dispute between a hospital and your insurer, here is what you need to know to protect yourself financially:

1. “Out-of-network” means you’ll likely pay more.

Insurance companies negotiate contracts with hospitals and other medical providers to set the rates they will pay for various services. When they reach an agreement, the hospital and most of the providers who work there become part of the insurance company’s network.

Most patients prefer to see providers who are “in-network” because their insurance picks up some, most, or even all of the bill, which could be hundreds or thousands of dollars. If you see an out-of-network provider, you could be on the hook for the whole tab.

If you decide to stick with your familiar doctors even though they’re out-of-network, consider asking about getting a cash discount and about the hospital’s financial assistance program.

2. Rifts between hospitals and insurers often get repaired.

When Brown University health policy researcher Jason Buxbaum examined 3,714 nonfederal hospitals across the U.S., he said, he found that about 18% of them had a public dispute with an insurance company sometime from June 2021 to May 2025.

About half of those hospitals ultimately dropped out of the insurance company’s network, according to Buxbaum’s preliminary data. But most of those breakups ultimately get resolved within a month or two, he added. So your doctors very well could end up back in the network, even after a split.

3. You might qualify for an exception to keep costs lower.

Certain patients with serious or complex conditions might qualify for an extension of in-network coverage, called continuity of care. You can apply for that extension by contacting your insurer, but the process may prove lengthy. Some hospitals have set up resources to help patients apply for that extension.

Wingler ran that gantlet for her daughter, spending hours on the phone, filling out forms, and sending faxes. But she said she didn’t have the time or energy to do that for everyone in her family.

“My son was going through physical therapy,” she said. “But I’m sorry, dude, like, just do your exercises that you already have. I’m not fighting to get you coverage too, when I’m already fighting for your sister.”

Also worth noting, if you’re dealing with a medical emergency: For most emergency services, hospitals can’t charge patients more than their in-network rates.

4. Switching your insurance carrier may need to wait.

You might be thinking of switching to an insurer that covers your preferred doctors. But be aware: Many people who choose their insurance plans during an annual open enrollment period are locked into their plan for a year. Insurance contracts with hospitals are not necessarily on the same timeline as your “plan year.”

Certain life events, such as getting married, having a baby, or losing a job, can qualify you to change insurance outside of your annual open enrollment period, but your doctors’ dropping out of an insurance network is not a qualifying life event.

5. Doctor-shopping can be time-consuming.

If the split between your insurance company and hospital looks permanent, you might consider finding a new slate of doctors and other providers who are in-network with your plan. Where to start? Your insurance plan likely has an online tool to search for in-network providers near you. 

But know that making a switch could mean waiting to establish yourself as a patient with a new doctor and, in some cases, traveling a fair distance.

6. It’s worth holding on to your receipts.

Even if your insurance and hospital don’t strike a deal before their contract expires, there’s a decent chance they will still make a new agreement.

Some patients decide to put off appointments while they wait. Others keep their appointments and pay out-of-pocket. Hold on to your receipts if you do. When insurers and hospitals make up, the deals often are backdated, so the appointments you paid for out-of-pocket could be covered after all.

End of an Ordeal

Three months after the contract between Wingler’s insurance company and the hospital lapsed, the sides announced they had reached a new agreement. Wingler joined the throng of patients scheduling appointments they’d delayed during the ordeal.

In a statement, Jim Turner, a spokesperson for Anthem’s parent company, Elevance Health, wrote, “We approach negotiations with a focus on fairness, transparency, and respect for everyone impacted.”

Maze from MU Health Care said: “We understand how important timely access to pediatric specialty care is for families, and we’re truly sorry for the frustration some parents have experienced scheduling appointments following the resolution of our Anthem contract negotiations.”

Wingler was happy her family could see their providers again, but her relief was tempered by a resolve not to be caught in the same position again.

“I think we will be a little more studious when open enrollment comes around,” Wingler said. “We’d never really bothered to look at our out-of-pocket coverage before because we didn’t need it.”

Author: Bram Sable-Smith: brams@kff.org, @besables

Illustrations: Oona Zenda: ozenda@kff.org

The post So Your Insurance Dropped Your Doctor. Now What? appeared first on Medika Life.

Department of Health and Human Services Secretary Robert F. Kennedy Jr. has floated a seismic idea: adding autism to the list of conditions covered by the Vaccine Injury Compensation Program. The program, known as VICP, provides a system for families to file claims against vaccine providers in cases in which they experience severe side effects. Kennedy has also suggested broadening the definitions of two serious brain conditions — encephalopathy and encephalitis — so that autism cases could qualify.

Either move, experts warn, would unleash a flood of claims, threatening the program’s financial stability and handing vaccine opponents a powerful new talking point.

Legally, HHS “is required to undergo notice and comment rulemaking to revise the table,” said Richard Hughes, a law firm partner who teaches at George Washington University. The “table” is a list of specific injuries that the U.S. government accepts as presumed to be caused by a vaccine if those injuries occur within a certain time window. If someone can show they meet the criteria, they have a simpler path to securing compensation without having to prove fault. Autism is not in the table because a link between vaccines and autism has been thoroughly debunked.

If autism is added, Hughes explained, the VICP could face “an exorbitant number of claims that would threaten the viability of the program.”

Asked about its possible plans, an HHS spokesperson told CBS News the agency does not comment on future or potential policy decisions.

Carole Johnson, former administrator of the Health Resources and Services Administration, which oversees VICP, cautioned that the system is already overburdened: “The backlog is not just a function of management, it’s built into the statute itself. That’s important context for any conversation about adding new categories of claims.”

Dorit Reiss, a law professor at the University of California College of the Law-San Francisco, said that any such change would be exploited: “This can, and likely will, be used to cast doubt on vaccines.”

Compensation Without Causation

The Vaccine Injury Compensation Program was born of crisis. In 1982, “Vaccine Roulette,” a television documentary, aired nationwide, alleging routine childhood shots were causing seizures, brain damage, and even sudden infant death. The program alarmed parents and triggered a surge of lawsuits against vaccine makers.

“That led to a flood of litigation against vaccine makers,” recalled Paul Offit, a pediatric infectious disease specialist and vaccine inventor at the University of Pennsylvania. “I mean, to the point that it drove them out of the business. … By the mid-1980s, there were $3.2 billion worth of lawsuits against these companies.”

Were it not for the VICP, Offit said, “We wouldn’t have vaccines for American children. The companies — it wasn’t worth it for them.”

The National Childhood Vaccine Injury Act of 1986 created a no-fault system. Families who believed a vaccine caused harm could file a claim; if the injury appeared on the table within a set time frame, compensation was automatic. If not, claimants could present medical evidence. The system had two purposes: provide compensation and protect the vaccine supply.

From the beginning, the table was understood not as a scientific document but as a legal tool.

“It’s a legal document and things can be included for policy reasons even if the causation evidence is weak,” Reiss said. She explained, “The program is designed to be generous, to compensate in cases of doubt.”

But, she said, “autism is not in that category. The science is clear. Adding it would be pure politics.”

This tension — between law, science, and public perception — has defined the program for nearly four decades.

What Expansion Would Mean in Practice

Since 1988, federal data shows more than 25,000 petitions to the VICP have been adjudicated; of those, 12,019 were granted compensation and 13,007 were dismissed. About 60% of compensated cases involved negotiated settlements in which HHS drew no conclusion about the cause. Over the same period, billions of vaccine doses were safely administered to millions of Americans.

Adding autism to the VICP table would change that picture overnight.

Federal estimates suggest up to 48,000 children could qualify immediately under a “profound autism” standard, with potential payouts averaging $2 million per case, at an initial cost of nearly $100 billion, followed by annual totals of about $30 billion a year — dwarfing the current $4 billion trust, a new analysis finds.

“Any case where the symptoms appeared in the past eight years and the parents blame vaccines,” Reiss said. “I don’t know how many that would be. The fund has a surplus of over $4 billion. One seriously disabled child’s care can cost millions, so a significant number, say 100,000 compensations, might exhaust it.”

Furthermore, with only eight special masters handling cases, the system would also be paralyzed by backlogs.

The stakes are not just fiscal. If the fund collapses under the weight of autism claims, vaccine makers may question whether producing vaccines for the U.S. market is worth the risk. That would mirror the crisis of the 1980s, which led to the establishment of the VICP.

Autism and the Courts

In the late 1990s and early 2000s, Andrew Wakefield’s now-retracted paper alleging a link between the MMR vaccine and autism fueled a surge of VICP claims. By 2002, the VICP was swamped with petitions alleging vaccines had caused autism. The court consolidated thousands of cases into the Omnibus Autism Proceedings, selecting a handful of test cases to decide them all.

After years of hearings and expert testimony, the conclusion was unequivocal: vaccines do not cause autism. In 2010, the court ruled against petitioners on every theory of causation. The U.S. Court of Federal Claims affirmed, and the Court of Appeals upheld, the decision.

“That precedent is binding,” said Richard Hughes, a vaccine law expert at George Washington University and former VICP legal counsel. “Autism was litigated thoroughly and rejected. That still carries weight in the court today.”

The Ghost of Hannah Poling

Yet, the vaccine-autism debate has never quite faded. In 2008, the government conceded a case involving Hannah Poling, a girl with a rare mitochondrial disorder who developed autism-like symptoms after vaccination. Officials stressed the concession was specific to her condition, not evidence of a general link. But headlines told another story: “Family to Receive $1.5 Million in First-Ever Vaccine Autism Court Award.”

The Poling case fueled years of confusion.

Autism Science Today

The science is clearer than ever. Autism begins early in pregnancy, not in toddlerhood when most vaccines are given.

“Vaccinations … happened around the time families were recognizing symptoms of autism in their children,” said Catherine Lord, a UCLA clinical psychologist and specialist in autism diagnosis. “However, we now know that autism begins much earlier, likely as the fetus develops during pregnancy, so it cannot be an explanation.”

Peter Hotez, a pediatric infectious disease specialist and vaccine scientist at the Baylor College of Medicine who is also the father of a young adult with autism, underscores that point: “The drivers of autism are genetics and, in rare cases, environmental exposures during pregnancy, not vaccines. We’ve been over this ground for decades, and the evidence is overwhelming.”

Sarah Despres, former legal counsel to the secretary of Health and Human Services in the Biden administration and now a consultant to nonprofit organizations on immunization policy, adds that the compensation program itself is often misunderstood.

“The table was originally written as a political document,” she said. “The purpose of the program was to be swift, generous, and fair. … There would be cases that may not be caused by the vaccine but would be compensated if you went through this table injury scheme, where you don’t have to prove causation.”

What’s at risk: Harm from the Diseases Themselves

The stakes are not abstract. Measles, one of the most contagious pathogens on Earth, spreads so efficiently that one infected child can transmit it to 90% of susceptible contacts. Before vaccinations began in the 1960s, measles sickened hundreds of thousands annually in the U.S., killing hundreds and causing thousands of cases of encephalitis and lifelong disability. Complications included pneumonia, brain swelling, and, in rare cases, a fatal degenerative brain disorder called subacute sclerosing panencephalitis, or SSPE, that can strike years later. This year, a school-age child in Los Angeles County died of SSPE after contracting measles in infancy, before being eligible for vaccination.

Mumps was once a near-universal childhood illness. Though often dismissed as mild, it can cause sterility in men, meningitis, and permanent hearing loss. Outbreaks on college campuses, as recently as the 2000s, showed how quickly it can return when vaccination rates slip.

Rubella, also known as German measles, is mild in most children, but can be devastating during pregnancy. Congenital Rubella Syndrome, or CRS, caused waves of tragedy before the development of the vaccine: Thousands of babies each year were born blind, deaf, with heart defects, or with intellectual disabilities. In medical texts, autism itself is listed as one of CRS’ sequelae, or possible consequences — proof that rubella infection, not vaccination, can contribute to developmental disorders.

Measles, mumps, and rubella “are not trivial,” said Walt Orenstein, former head of the Centers for Disease Control and Prevention’s immunization program. “Fever, high fever, is common … and they have frequent complications.”

And yet, as these diseases fade from living memory, a counternarrative has gained traction. On Sept. 29, the nonprofit Physicians for Informed Consent, a group that disputes the scientific consensus on vaccines, announced it had mailed its “Silver Booklet” on vaccine safety to every member of Congress, as well as to President Donald Trump and Vice President JD Vance. The book claims that “vaccines are not proven to be safer than the diseases they intend to prevent,” and calls on federal leaders to punish states that restrict vaccine exemptions. (The booklet isn’t free. The group sells copies for $25 on Amazon.)

Scientists say this framing misrepresents the basic math of risk. “Measles is one of the most important infectious diseases in human history,” notes “Plotkin’s Vaccines,” the field’s authoritative textbook. “The widespread use of measles vaccines in the late 20th and early 21st centuries led to a further marked reduction in measles deaths. Measles vaccination averted an estimated 31.7 million deaths from 2000 to 2020.”

Kennedy’s possible move to expand the Vaccine Injury Compensation Program hinges on casting doubt — on suggesting that science is unsettled, that vaccines may be riskier than diseases.

“One tactic used to argue that vaccines cause autism is the use of compensation decisions from the National Vaccine Injury Compensation Program to claim such a link,” said Reiss of UC Law-San Francisco. “Even the cases that most closely address the question of vaccines and autism do not show the link that opponents claim exists, and many of the cases used are misrepresented and misused.”

Offit underscores the danger on the perception side. “When people see the Vaccine Injury Compensation program, they assume that any money that is given is because there was a vaccine injury,” he said.

Kathryn Edwards, an expert in pediatric infectious diseases and vaccine safety at Vanderbilt University, said, “Expanding compensation for issues that are not clearly related to vaccines … suggests that these conditions are related to vaccines when they are not.” She compared it to the removal of thimerosal, a preservative dropped from most childhood vaccines to ease public fears, despite no evidence of harm. “Now, we are still suffering from that action.”

Public health experts stress that such narratives invert reality. The very diseases being downplayed once killed or disabled tens of thousands of American children each year. As pediatrician, psychiatrist, and medical historian Howard Markel put it: “Back a hundred years ago, everybody lost a kid or knew a kid who died of one of these diseases. … We never conquer germs, we wrestle them to a draw. That’s the best we do. And so this is a real … handicap to the other side, the microbes who live to infect.”

Families and the Future

The hardest voices to reckon with are those of families. Parents of autistic children often feel abandoned — unsupported by disability programs, exhausted by care needs, searching for answers. Kennedy’s appeal to them is emotional, not scientific.

Reiss noted that families deserve far more support but argues that it shouldn’t come through VICP.

“The program is to award compensation to those injured by vaccines,” she said. “We should have more direct support — disability funding, disability aid. Kennedy has been taking HHS in the opposite direction, cutting services where we need more.”

Despres made the same point: “The goal of the program really was if there’s a close call, we’re going to err on the side of compensation. … And it’s really important that everyone understands that compensation does not mean that the vaccine actually caused the injury. … And I think we have seen statistics around the compensation program misused by those who would want to sow distrust in vaccines, to say vaccines are unsafe, when in fact … that’s not what this is.”

UCLA’s Lord urged a shift in focus. “For the last 50 years, science has focused on the biological causes of autism, which has led to great progress, especially in genetics,” she said. Of Secretary Kennedy, she said, “He could help more by acknowledging the value of science, but also the need to better attend to the actual lives of autistic people and their families.”

What Comes Next?

If Kennedy decides to move forward with such a plan, HHS would need to draft a rule, open it to public comment, and then defend the change in court. The pushback will be fierce: from scientists, from public health leaders, and from families who fear being misled yet again.

The debate over adding autism to the Vaccine Injury Table is not just a policy debate. The program was built on the principle of compensation without causation, a fragile balance designed to sustain both trust and supply. Adding autism could collapse that distinction entirely.

[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 — the independent source for health policy research, polling, and journalism.]

The post Inside the High-Stakes Battle Over Vaccine Injury Compensation, Autism, and Public Trust appeared first on Medika Life.

When Selam Solomon Caldwell and her husband learned she was pregnant last year, the stakes for finding the right OB-GYN felt high. Caldwell, a Black woman, had heard stories from family and friends of maternity care providers who ignored their requests or pressured them into cesarean sections without clear medical justification.

As a relative newcomer to Los Angeles, the recruiter, now 31, knew few Black people who could recommend doctors who had treated them with respect. She combed review sites, including Google reviews and Healthgrades, but couldn’t find how nearby physicians and hospitals might treat a Black woman like her.

“It’s hard to tell if it’s a fellow Black person who’s giving the review,” Caldwell said.

Consumer ratings sites rarely identify patient experiences by race or ethnicity and hospitals are under no obligation to reveal the racial and ethnic breakdowns of their patient satisfaction scores. Yet that information could be instrumental in holding maternity care providers and hospitals accountable for treating patients inequitably and could empower expectant mothers like Caldwell in finding quality obstetric care.

“You can’t change what you don’t see,” said Kimberly Seals Allers, founder of Irth, an app allowing Black and brown women to find and leave reviews of maternity care providers. She’s one of a few entrepreneurs developing new tools for collecting feedback from mothers of color.

A steady drip of new research over the past several years has spotlighted racial discrimination by maternity care providers and the role it may play in one of the country’s most vexing health disparities: Black women experience the worst birthing outcomes, a gap not explained by income or education, according to a KFF analysis. In 2021, they were nearly three times as likely to die of pregnancy-related causes as white women.

Mothers of color, especially Black women, report that they do in fact experience discrimination. They are more likely than white women to say that their care providers ignored them, scolded them, or pressured them into treatments they didn’t want. The extent to which discrimination is reported varies widely by survey, but one recently published report by the Centers for Disease Control and Prevention found roughly 30% of Black, Hispanic, and multiracial women reported mistreatment during maternity care, compared with 20% of women overall.

It’s unclear how many hospitals track survey responses by race, and, even if they do, they rarely reveal that information. And the federal government requires generic reporting on how patients say they were treated, making it difficult to pin down and address incidents of bias in maternity care.

Funding and Regulations Lag

Currently, the results of the industry’s standard patient experience survey, known as the Hospital Consumer Assessment of Healthcare Providers and Systems, are made publicly available by the federal government to help patients compare hospitals. They incentivize hospitals to improve care and are included in the rankings of many hospital ratings sites, such as U.S. News & World Report’s Best Hospitals. But it doesn’t ask about maternity care or discrimination and has low response rates, particularly among people of color.

These flaws can also make the survey inadequate for improving birth equity. “We know it’s insufficient,” said Amanda P. Williams, an OB-GYN and clinical innovation adviser to the nonprofit California Maternal Quality Care Collaborative. Hospitals, she said, could fill in the gaps by collecting feedback from maternity care surveys and breaking the results out by race and other demographic information; they could also talk to patients through forums such as town halls or focus groups.

Joy Lewis, senior vice president for health equity strategies at the American Hospital Association, said many hospitals do this work, both generally and in obstetrics.

However, Williams believes it isn’t happening enough in maternity care.

She said there are some pockets where people are doing these activities but that they are not yet widespread. At a national conference of 200 hospital executives this year, Williams said, only a few raised their hands when asked if they break out their maternity outcomes data. “If your overall C-section rate is fine, you might think everything’s hunky-dory,” she said. “But if you see that your Black people are having 50% higher C-section rates than your white and Asian patients, there’s very important work to be done.”

Then there are barriers to participation. Studies have found many in the Black community distrust the health care system.

Fearing retaliation and being seen as an “angry Black woman,” Ta-She-Ra Manning, a maternal health program coordinator in Fresno, California, said she didn’t provide any critical feedback when her OB-GYN dismissed her concerns about unusual symptoms during her 2021 pregnancy.

Meanwhile, new funding to measure disparities has been slow in coming. President Biden’s 2023 budget proposed $7.4 million to develop a supplemental survey aimed at reducing maternal health disparities, among other steps. But Congress did not fund the item. Instead, an agency in the Department of Health and Human Services is developing it with its own funding and estimates the work will take less than five years, according to a statement from Caren Ginsberg, who directs the agency’s surveys.

Still, the public likely won’t see changes anytime soon. After a survey’s measures are created, it can take several years for the results to be publicly reported or tied to payment, said Carol Sakala, senior director for maternal health at the National Partnership for Women & Families, an advocacy organization.

“This molasses level of movement contrasts acutely with all the things hitting the news about people not getting the right care and attention and respect,” Sakala said.

Amid growing interest in health equity, traditional ratings sites are grappling with how much to share with the public. For its birthing hospital ratings, U.S. News & World Report recently started assessing whether hospitals tracked racial disparities in maternity outcomes measures, but it withholds actual results. Healthgrades is taking time to think through how to collect and display sensitive information publicly, said spokesperson Sarah Javors in a statement.

Black Innovators Fight for Better Data

Some Black women are trying to fill the void by creating new feedback mechanisms that could be more trusted by the community. Allers said she created Irth after a traumatic birth experience as a Black mother at a highly rated hospital left her feeling failed by mainstream ratings. On the app, verified users answer questions, from whether they felt respected by their doctor to if they experienced certain types of mistreatment such as dismissal of pain. Irth currently has 10,000 reviews of hospitals, OB-GYNs, and pediatricians nationally, according to Allers.

“Our data is for the community,” said Allers. “They know their feedback has value to another mom or family.”

Irth also offers analysis of the reviews to hospitals and leads campaigns to collect more reviews for them. But Allers said many hospitals have expressed little interest.

Karen Scott, an OB-GYN who created PREM-OB, a scientifically validated survey that measures racism in Black birthing experiences, said she has met hospital leaders who don’t think their providers could mistreat patients or who worry that documenting responses could carry legal risk.

The American Hospital Association’s Lewis declined to comment specifically on Irth and PREM-OB but acknowledged the Black community’s long-standing mistrust of health care providers. She said hospitals want to hear more from patients in historically marginalized groups.

Early signs of progress are emerging in parts of the country.

California hospitals will likely report disparities in birth outcomes and patient satisfaction measures. Hospitals are expected to start posting data broken out by race and other demographics on their websites in 2026, though the state hasn’t finalized the measures that will be required, said Andrew DiLuccia, a spokesperson for the state’s health data agency. At least two states, Washington and New Jersey, have disclosed rates of C-sections among low-risk patients by race for individual hospitals.

Scott founded Birthing Cultural Rigor to increase uptake of her survey. The firm has partnered with birth equity groups to recruit respondents in select counties in Georgia, Michigan, Ohio, and Tennessee. Scott said results will be used to train local health professionals on how to reduce racism in maternity care.

Separately, Irth will collect and analyze reviews for three hospitals or health systems in California, said Allers. One of them, MemorialCare Miller Children’s and Women’s Hospital Long Beach, will work with Irth to better understand the impact of birth equity efforts such as implicit bias training.

“We’ll get to see if what we’re doing is actually working,” said Sharilyn Kelly, executive director of the hospital’s perinatal services.

Caldwell, the recruiter, eventually found a doctor she trusted and went on to have a smooth pregnancy and delivery. Her son is now 8 months old. But with so little information available on how she might be treated, she said, she felt anxious until she met her doctor, when “a lot of that stress and anxiety melted away.”

Digital strategy & audience engagement editor Chaseedaw Giles contributed to this report.

[Editor’s note: California Healthline is an editorially independent service of the California Health Care Foundation, which has contributed funding to PREM-OB and the birth equity nonprofit Narrative Nation, which developed Irth.]

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

The post Mothers of Color Can’t See if Providers Have a History of Mistreatment. Why Not? appeared first on Medika Life.

DANDRIDGE, Tenn. — Rachel Solomon and judges hadn’t been on the best of terms. Then Judge O. Duane Slone “dumbfounded” her.

Solomon was given her first Percocet at age 12 by a family member with a medicine cabinet full. It made her feel numb, she said. “Nothing hurt.” By 17, she was taking 80-milligram OxyContins. A decade later, she was introduced to heroin.

During those years, Solomon was in and out of trouble with the law.

Then, five years ago, at 32, she arrived in Slone’s courtroom, pregnant, fearing the worst. But the state circuit court judge saw promise. He ruled that Solomon would serve jail time for an outstanding warrant for aggravated burglary and then would be placed in a program for pregnant or parenting women recovering from addiction. She would retain custody of her son, Brantley, now 4.

Slone also offered an option that many judges, particularly in rural jurisdictions, at that time were averse to extending: medication for opioid use disorder, or MOUD.

A study conducted a decade ago found that barely half of drug treatment courts offered medication treatment. Those that didn’t cited uncertainty about its efficacy and noted political, judicial, and administrative opposition. But research in the years since has persuaded many of the most insistent abstinence-only advocates.

According to Monica Christofferson, director of treatment court programs at the Center for Justice Innovation, amid an accelerating opioid crisis there has been a “huge shift” among judges, prosecutors, and law enforcement agencies away from the stigma associated with medication treatment. Simply put, “MOUD works,” Christofferson asserted.

By 2022, more than 90% of drug courts located in communities with high opioid mortality rates that responded to a survey said they allow buprenorphine and/or methadone, the medications most commonly used to treat addiction. The study also found that 65% of drug court program staffers have received training in medication for treatment, and a similar share have arranged for clients to continue receiving medications while serving jail time for program violations. Still, almost 1 in 4 programs told researchers they overrule medication decisions.

Federal legislation has lowered the barriers to it. And Bureau of Justice Assistance funding for treatment-court programs now mandates that medication for substance use disorder be provided.

Solomon experienced that shift in real time in Slone’s courtroom as the judge allowed her access to medication to treat her addiction to opioids.

As a young prosecutor in the 1990s in mostly rural eastern Tennessee, Slone was embedded with a drug task force and was well versed in efforts to counteract the supply side of the opioid crisis. Then, as a circuit court judge, he’d put his share of people behind bars on drug-related convictions.

As the crisis deepened, he started to wonder if addressing the demand side would be more effective.

Like so many other prosecutors and judges, Slone believed abstinence was the only path to recovery. But in 2013, after consulting with substance use disorder experts, he relented, introducing medication as an alternative to incarceration for pregnant women. By 2016, he had fully embraced it throughout his recovery courts — even as most judges, he said, “still believed that it was substituting one drug for another.”

Building from evidence-based research, Slone has launched programs that show how a judge, and a region, can trade an abstinence-only, lock-’em-up approach for one that offers a full range of paths to recovery.

Before witnessing medication treatment’s efficacy, Slone said, he would tell a defendant charged with a drug offense, “‘This is your second chance. If you violate the conditions of your probation, I’m going to put you in jail.’”

Often, six months later they’d be back in his courtroom, charged with a low-level crime and having tested positive for drugs. “They’re 19, maybe 20 years old, and I’m executing a five-year sentence. It makes me sick to my stomach now.”

Slone was sure there must be a better way.

A drug recovery court, which he co-founded in his 4th Judicial District in 2009, was a first step. It allows defendants with nonviolent drug-related charges to avoid jail time by entering treatment and counseling. They’re closely monitored by a team that includes a judge, case manager, public defender, prosecutor, and probation officer. If the participant violates the terms of the agreement, the first step is a reassessment of treatment needs. Multiple violations may result in incarceration.

Because this form of drug court is resource-intensive, relatively few people can be enrolled. So in 2013, Slone introduced the Tennessee Recovery Oriented Compliance Strategy, or TN-ROCS, an alternative to jail for those who aren’t considered at high risk of recidivism but are deemed in urgent need of treatment. Many are pregnant women or mothers of young children.

Given the reduced need for supervision, the program can accommodate more participants. So far, more than 1,000 people have been on the district’s TN-ROCS docket.

Both the recovery court and TN-ROCS offer three medication options: buprenorphine, methadone, and naltrexone.

Since TN-ROCS’ launch, Slone said, his community has seen a decrease in property crimes and its jail population. Over its first five years, all 34 pregnant women in the program gave birth to healthy babies and 30 kept custody of their children. TN-ROCS is now being replicated across the state.

One barrier to broader acceptance of medication treatment in both rural and urban communities, Christofferson said, is a lack of education.

Corey Williams agrees. He advocates for educating criminal justice system officials. Williams is an officer with the Lubbock, Texas, Police Department and is a consultant with the Law Enforcement Action Partnership, which promotes drug policy and criminal justice reform. He believes that if more criminal justice officials had personal experience with medication to treat substance use disorder, they’d view it differently.

Williams’ wife, Brianne Williams, became addicted to opioids in medical school. She participated in a series of abstinence-only programs and was free of the drugs for seven years, then relapsed. She was arrested for writing herself a prescription for opioids and placed on probation.

She had entered a Suboxone treatment program, but her probation officer incorrectly informed her she couldn’t remain on Suboxone on probation. Williams relapsed, failed a drug test, and served 30 months in federal prison. After her release, she went back on Suboxone — a brand-name combination of buprenorphine and naloxone — and has maintained her sobriety. “It improved my life drastically,” she said. She now hopes to regain her medical license and specialize in addiction treatment.

The relative unavailability in rural areas of medication treatment is certainly a problem. A shortage, Christofferson noted, is not only an issue in itself, but also a barrier to overcoming stigma. More openings available, more success stories. More success stories, less stigma. Fewer provider options also means one bad actor — a provider who overprescribes or is otherwise negligent — perpetuates the stigma. Strict oversight is essential.

Physician Stephen Loyd influenced Slone’s decision to embrace medication treatment and is now a member of Slone’s recovery court team. Loyd was practicing internal medicine in eastern Tennessee when he developed a 100-pill-a-day addiction to prescription opioids. He was the inspiration for the character Michael Keaton portrayed in the Hulu series “Dopesick.” Loyd overcame his addiction and served as the state’s “opioid czar” under Gov. Bill Haslam from 2016 to 2018.

While in state government, Loyd helped plant the seed for TN-ROCS. He told Slone the first judge to take such an initiative would “be on the cover of Time magazine, because your success rates are gonna go up dramatically; you’re gonna save a bunch of lives.”

“He didn’t get on the cover of Time,” Loyd allowed, “but he did win the William H. Rehnquist Award.” The William H. Rehnquist Award for Judicial Excellence is among the country’s highest judicial honors.

Rachel Solomon contends one of those lives saved was hers.

Today she and her son are together; she’s employed. She remains on Suboxone. She feels good. And she feels fortunate she arrived in Slone’s courtroom when she did.

“He’s the reason I am where I am today,” she said. “He really is.”

The post Once-Resistant Rural Court Officials Begin to Embrace Medications to Treat Addiction appeared first on Medika Life.

Diego never imagined he’d carry a gun.

Not as a child, when shots were fired outside his Chicago-area home. Not at age 12, when one of his friends was gunned down.

Diego’s mind changed at 14, when he and his friends were getting ready to walk to midnight Mass for the feast of Our Lady of Guadalupe. But instead of hymns, Diego heard gunfire, and then screaming. A gang member shot two people, including one of Diego’s friends, who was hit nine times.

“My friend was bleeding out,” said Diego, who asked KHN not to use his last name to protect his safety and privacy. As his friend lay on the ground, “he was choking on his own blood.”

The attack left Diego’s friend paralyzed from the waist down. And it left Diego, one of a growing number of teens who witness gun violence, traumatized and afraid to go outside without a gun.

Research shows that adolescents exposed to gun violence are twice as likely as others to perpetrate a serious violent crime within two years, perpetuating a cycle that can be hard to interrupt.

Diego asked his friends for help finding a handgun and — in a country supersaturated with firearms — they had no trouble procuring one, which they gave him free.

“I felt safer with the gun,” said Diego, now 21. “I hoped I wouldn’t use it.”

For two years, Diego kept the gun only as a deterrent. When he finally pulled the trigger, it changed his life forever.

Disturbing Trends

The news media focuses heavily on mass shootings and the mental state of the people who commit them. But there is a far larger epidemic of gun violence — particularly among Black, Hispanic, and Native American youth — ensnaring some kids not even old enough to get a driver’s license.

Research shows that chronic exposure to trauma can change the way a child’s brain develops. Trauma also can play a central role in explaining why some young people look to guns for protection and wind up using them against their peers.

The number of children under 18 who killed someone with a firearm jumped from 836 in 2019 to 1,150 in 2020.

In New York City, the number of young people who killed someone with a gun more than doubled, rising from 48 juvenile offenders in 2019 to 124 in 2022, according to data from the city’s police department.

Youth gun violence increased more modestly in other cities; in many places, the number of teen gun homicides rose in 2020 but has since fallen closer to pre-pandemic levels.

Researchers who analyze crime statistics stress that teens are not driving the overall rise in gun violence, which has increased across all ages. In 2020, 7.5% of homicide arrests involved children under 18, a slightly smaller share than in previous years.

Local leaders have struggled with the best way to respond to teen shootings.

A handful of communities — including Pittsburgh; Fulton County, Georgia; and Prince George’s County, Maryland — have debated or implemented youth curfews to curb teen violence. What’s not in dispute: More people ages 1 to 19 die by gun violence than by any other cause.

A Lifetime of Limits

The devastating toll of gun violence shows up in emergency rooms every day.

At the UChicago Medicine trauma center, the number of gunshot wounds in children under 16 has doubled in the past six years, said Dr. Selwyn Rogers, the center’s founding director. The youngest victim was 2. “You hear the mother wail, or the brother say, ‘It’s not true,’” said Rogers, who works with local youth as the hospital’s executive vice president for community health engagement. “You have to be present in that moment, but then walk out the door and deal with it all over again.”

In recent years, the justice system has struggled to balance the need for public safety with compassion for kids, based on research that shows a young person’s brain doesn’t fully mature until age 25. Most young offenders “age out” of criminal or violent behavior around the same time, as they develop more self-control and long-range thinking skills.

Yet teens accused of shootings are often charged as adults, which means they face harsher punishments than kids charged as juveniles, said Josh Rovner, director of youth justice at the Sentencing Project, which advocates for justice system reform.

About 53,000 juveniles in 2019 were charged as adults, which can have serious health repercussions. These teens are more likely to be victimized while incarcerated, Rovner said, and to be arrested again after release.

Young people can spend much of their lives in a poverty-imposed lockdown, never venturing far beyond their neighborhoods, learning little about opportunities that exist in the wider world, Rogers said. Millions of American children — particularly Black, Hispanic, and Native American kids — live in environments plagued by poverty, violence, and drug use.

The covid-19 pandemic amplified all those problems, from unemployment to food and housing insecurity.

Although no one can say with certainty what spurred the surge in shootings in 2020, research has long linked hopelessness and lack of trust in police — which increased after the murder of George Floyd that year — to an increased risk of community violence. Gun sales soared 64% from 2019 to 2020, while many violence prevention programs shut down.

One of the most serious losses children faced during the pandemic was the closure of schools — institutions that might provide the only stabilizing force in their young lives — for a year or more in many places.

“The pandemic just turned up the fire under the pot,” said Elise White, deputy director of research at the nonprofit Center for Justice Innovation, which works with communities and justice systems. “Looking back, it’s easy to underplay now just how uncertain that time [during the pandemic] felt. The more that people feel uncertain, the more they feel there’s no safety around them, the more likely they are to carry weapons.”

Of course, most children who experience hardship never break the law. Multiple studies have found that most gun violence is perpetrated by a relatively small number of people.

The presence of even one supportive adult can protect children from becoming involved with crime, said Dr. Abdullah Pratt, a UChicago Medicine emergency physician who lost his brother to gun violence.

Pratt also lost four friends to gun violence during the pandemic. All four died in his emergency room; one was the son of a hospital nurse.

Although Pratt grew up in a part of Chicago where street gangs were common, he benefited from the support of loving parents and strong role models, such as teachers and football coaches. Pratt was also protected by his older brother, who looked out for him and made sure gangs left the future doctor alone.

“Everything I’ve been able to accomplish,” Pratt said, “is because someone helped me.”

Growing Up in a ‘War Zone’

Diego had no adults at home to help him feel safe.

His parents were often violent. Once, in a drunken rage, Diego’s father grabbed him by the leg and swung him around the room, Diego said, and his mother once threw a toaster at his father.

At age 12, Diego’s efforts to help the family pay overdue bills — by selling marijuana and stealing from unlocked cars and apartments — led his father to throw him out of the house.

At 13, Diego joined a gang made up of neighborhood kids. Gang members — who recounted similar stories about leaving the house to escape abuse — gave him food and a place to stay. “We were like a family,” Diego said. When the kids were hungry, and there was no food at home, “we’d go to a gas station together to steal some breakfast.”

But Diego, who was smaller than most of the others, lived in fear. At 16, Diego weighed only 100 pounds. Bigger boys bullied and beat him up. And his successful hustle — selling stolen merchandise on the street for cash — got the attention of rival gang members, who threatened to rob him.

Children who experience chronic violence can develop a “war zone mentality,” becoming hypervigilant to threats, sometimes sensing danger where it doesn’t exist, said James Garbarino, an emeritus professor of psychology at Cornell University and Loyola University-Chicago. Kids who live with constant fear are more likely to look to firearms or gangs for protection. They can be triggered to take preemptive action — such as firing a gun without thinking — against a perceived threat.

“Their bodies are constantly ready for a fight,” said Gianna Tran, deputy executive director of the East Bay Asian Youth Center in Oakland, California, which works with young people living in poverty, trauma, and neglect.

Unlike mass shooters, who buy guns and ammunition because they’re intent on murder, most teen violence is not premeditated, Garbarino said.

In surveys, most young people who carry guns — including gang members — say they do so out of fear or to deter attacks, rather than perpetrate them. But fear of community violence, both from rivals and the police, can stoke an urban arms race, in which kids feel that only the foolish walk around without a weapon.

“Fundamentally, violence is a contagious disease,” said Dr. Gary Slutkin, founder of Cure Violence Global, which works to prevent community violence.

Although a small number of teens become hardened and remorseless, Pratt said, he sees far more shootings caused by “poor conflict resolution” and teenage impulsivity rather than a desire to kill.

Indeed, firearms and an immature teenage brain are a dangerous mix, Garbarino said. Alcohol and drugs can magnify the risk. When confronted with a potentially life-or-death situation, kids may act without thinking.

When Diego was 16, he was walking a girl to school and they were approached by three boys, including a gang member who, using obscene and threatening language, asked if Diego was also in a gang. Diego said he tried to walk past the boys, one of whom appeared to have a gun.

“I didn’t know how to fire a gun,” Diego said. “I just wanted them to get away.”

In news accounts of the shooting, witnesses said they heard five gunshots. “The only thing I remember is the sound of the shots,” Diego said. “Everything else was going in slow motion.”

Diego had shot two of the boys in the legs. The girl ran one way, and he ran another. Police arrested Diego at home a few hours later. He was tried as an adult, convicted of two counts of attempted homicide, and sentenced to 12 years.

A Second Chance

In the past two decades, the justice system has made major changes in the way it treats children.

Youth arrests for violent crime plummeted 67% from 2006 to 2020, and 40 states have made it harder to charge minors as adults. States also are adopting alternatives to incarceration, such as group homes that allow teens to remain in their communities, while providing treatment to help them change their behavior.

Because Diego was 17 when he was sentenced, he was sent to a juvenile facility, where he received therapy for the first time.

Diego finished high school while behind bars and went on to earn an associate’s degree from a community college. He and other young inmates went on field trips to theaters and the aquarium — places he had never been. The detention center director asked Diego to accompany her to events about juvenile justice reform, where he was invited to tell his story.

Those were eye-opening experiences for Diego, who realized he had seen very little of Chicago, even though he had spent his life there.

“Growing up, the only thing you see is your community,” said Diego, who was released after four years in detention, when the governor commuted his sentence. “You assume that is what the whole world is like.”

KHN data editor Holly K. Hacker and researcher Megan Kalata contributed to this report.

The post Pandemic Stress, Gangs, and Utter Fear Fueled a Rise in Teen Shootings appeared first on Medika Life.

CHICAGO — Del-Kar Pharmacy in the North Lawndale neighborhood has had a front-row seat to history. Martin Luther King Jr. bought his daily newspaper there when he lived in Chicago in the late 1960s. The Black Panthers’ local headquarters was a block away, and the pharmacy shared a building with the Conservative Vice Lords, a notorious street gang whose members still check in on owner-pharmacist Edwin Muldrow today.

How pharmacy closures impact underserved communities.

When King’s assassination sparked riots in Chicago in 1968, the white-owned pharmacies in the area were ransacked. Muldrow’s father went to check on the pharmacy only to be told by the Vice Lords he had nothing to worry about.

“‘Go home,’” Muldrow said they told his father. “‘We’re not gonna let anybody touch you.’”

For nearly 60 years, the small drugstore has survived by building deep roots in the community, selling medicine, food and electronics in a neighborhood largely ignored by the large drugstore chains. Del-Kar is bucking a trend that has undermined numerous other pharmacies in Chicago and other U.S. cities. Although chain pharmacies are pulling out of many urban areas, sometimes citing rioting or theft, Muldrow isn’t quitting.

“Once you respect the community, the neighborhood looks out for you,” said Muldrow, 51, who started working as a pharmacist at Del-Kar in 1992. “They know that you’re here and you’re doing something positive.”

Like other community pharmacists nationwide, Muldrow has seen private insurers steer his customers toward their own allied chain, mail-order and specialty pharmacies. Urban independent pharmacies, particularly those in low-income Black and Latino communities, have been more likely to close than chain drugstores.

And pharmacies of all kinds in these communities, chain and independent, face a tough economic situation: They often have a disproportionately high share of customers enrolled in Medicaid or Medicare, which pay lower rates than private insurance.

“There’s really no financial incentive for pharmacies to open and stay open in minority neighborhoods,” said Dima Qato, a University of Southern California pharmacy professor.

According to a recent analysis she worked on, Black and Latino neighborhoods accounted for a third of pharmacy openings in Chicago from 2015 to 2020 but more than half of closures. As a result, the prevalence of pharmacy deserts increased from 33% of majority-Black census tracts to 45% and from 9% of majority-Latino tracts to 14%.

“Pharmacies are choosing to open in areas that already have pharmacies, in part because those are also the areas that have higher incomes and insurances that provide higher pharmacy reimbursement rates,” said Jenny Guadamuz, a University of Southern California health disparities researcher who led the study.

Muldrow said insurance often pays less for a medication than it costs him to acquire it. For example, he might be reimbursed $400 for an Advair inhaler that costs him $600.

“The profession is not what it used to be,” he said. “The profitability has been snatched.”

Average dispensing fees, set by insurance plans and intended to cover Muldrow’s overhead and salary, have plummeted from about $3 per prescription 30 years ago to as little as 10 cents, he said. He once sold medical supplies like lift chairs and oxygen tanks. But since Medicare implemented new fraud safeguards requiring accreditation, he said, he would have to pay $1,500 to $2,000 a year to continue receiving Medicare reimbursement.

“Now you have elderly people in the neighborhood that can’t come and get stuff,” Muldrow said. “They have to go to the hospital. They got to go through the mail.”

Muldrow keeps his store open by supplementing the meager payments he gets for filling prescriptions with other income. “The secret to our success here is that we own the property,” Muldrow said. “If I was paying $3,000, $4,000 or more a month rent, I would have been wiped out.”

Muldrow had job offers from multiple chain drugstores when he graduated from pharmacy school but chose to work for his father. “‘The only way I can repay you for giving me the opportunity to go to school is to come down here and work and continue what you started,’” he recalled telling him.

Chicago has encouraged pharmacies to locate in underserved areas — with little success. Qato pointed to a CVS branch that in 2010 received nearly $1 million in incentives to open in East Garfield Park. A nearby independent drugstore quickly closed, and the CVS shut its doors several years later, creating a pharmacy desert.

Illinois launched a program in 2019 to subsidize pharmacies in underserved urban and rural areas. But, Qato said, the program doesn’t adequately target neighborhoods at risk of becoming pharmacy deserts and excludes large chain pharmacies, which may be the only drugstores remaining in a neighborhood.

A year into the program, she said, only three of 80 eligible pharmacies in Chicago have received funds. Muldrow said he hadn’t heard of the program.

Some business strategies create de facto deserts. Late last year, the health insurer Aetna, owned by CVS Health, began preventing its Medicaid patients in Illinois from filling prescriptions at Walgreens pharmacies. As a result, some patients could no longer use the closest drugstore.

Dr. Thomas Huggett, a family physician at the Lawndale Christian Health Center on the West Side of Chicago, said some of his patients had trouble getting their medications in the first month of the new policy. One patient, who was homeless and had been diagnosed with severe mental illness, couldn’t get his prescription filled. Another had to take two buses to get his injectable antipsychotic medication. A third patient couldn’t get Suboxone, a treatment for opioid addiction.

“In the middle of one of the hotter spots in the country for opioid overdoses on the West Side of Chicago, it’s hard to imagine how anybody could justify it,” Huggett said.

In urban areas, Illinois regulations require prescription insurance plans to have at least one in-network pharmacy within a 15-mile radius or a 15-minute drive of their enrollees. But that can be too far to be practical for many customers, Huggett said.

“The majority of patients who have Medicaid have Medicaid because they are poor, and they generally don’t have cars,” Huggett said. “Looking at the maps, it is just so stark to see. The CVSs are intentionally avoiding black areas of Chicago.”

CVS spokesperson Mike DeAngelis said that about half of CVS stores nationwide are in areas that rank high on the Centers for Disease Control and Prevention’s Social Vulnerability Index, which tracks poverty, lack of vehicle access and crowded housing, among other factors.

“Maintaining access to pharmacy services in underserved communities is an important factor we consider when making store closure decisions,” DeAngelis said in an email. “Other factors include local market dynamics, population shifts, a community’s store density, and ensuring there are other geographic access points to meet the needs of the community.”

James Spidle, a 66-year-old veteran with serious heart problems, walks a mile using a cane to catch a bus in the Washington Heights neighborhood, about 13 miles south of Del-Kar, to pick up his prescriptions from a Walmart.

“I do the walk back and forth as a stress test,” he said. “If I don’t have any chest pains, I keep going.”

A closer option, a Walgreens, closed in 2016. A sign on the door directed customers to another branch that was a mile away in a more affluent neighborhood and had a grocery store pharmacy across the street.

The Endeleo Institute, the community development arm of Trinity United Church of Christ, has tried to fill the gap, using church vans to drive people to the nearest pharmacies. Melvin Thompson, its executive director, listed four other chain pharmacies that had closed within a three-mile radius of the Walgreens that shuttered in Washington Heights.

“Here we are in the midst of a pandemic, and we’re losing even more of these vital services in communities that can’t afford to lose,” he said. “It’s citywide, but it just seems to be relegated to Black and brown communities.”

Walgreens officials did not answer questions about how the company decides to close stores, but said that in metro Chicago about 99% of Chicagoans live within 2 miles of one of their stores. Walgreens spokesperson Kris Lathan said the company allocated $35 million to reopen 80 stores in Chicago damaged during the civil unrest after the murder of George Floyd in 2020.

“All but two of those locations have reopened,” she said. “The remaining two will open in the first half of 2022.”

Democratic state Rep. La Shawn Ford said pharmacy closures represent a loss of health care access for the community. “The pharmacy is not just a place to pick up medicine, it’s a surrounding of health care,” he said. “Who’s going to talk to that person when they get their medicine mail-delivered?”

It can also be a lifeline in other ways. During the pandemic, when indoor dining was shut down, Muldrow set up an outdoor grill and served burgers, tacos and other food. That showed him how much the neighborhood needed him — and for a lot more than medications. He is planning an expansion, to include a bodega with a juice bar and restaurant.

Muldrow was also reminded that the community is there for him in return. Last year, during the civil unrest, several businesses near Del-Kar were destroyed. But, in an echo of 1968, his shop emerged unscathed.

“I didn’t have any worries. I slept real good,” Muldrow said. “The brothers over here on Lawndale, they watched over me. If you know the people, the people look out for you.”

The post Deep Roots Help This Chicago Pharmacist Avoid Creating Another Drugstore Desert appeared first on Medika Life.

Though I grew up in Roxbury, “the heart of Black culture in Boston,” I now live in Los Angeles, where I typically shop for groceries at Whole Foods Market or Trader Joe’s. Their produce is fresh, green, abundant. Organic options beckon as you walk in the door.

So it gnawed at me, a Black woman, when I recently walked into a supermarket in a lower-income L.A. neighborhood and was greeted instead by an array of processed, high-sugar, high-sodium foods — often offered with a nice discount: Coca-Cola products, five 2-liter bottles for $5; sugary cereals, two for $4; boxed brownie and cake mixes, four for $5.

The pandemic had underlined long-standing health disparities of Black and brown communities. Covid had resulted in a 2.9-year decrease in life expectancy for Black Americans, compared with 1.2 years for white Americans. Research had consistently shown that among the underlying factors giving rise to those poor health statistics — high rates of diabetes and heart disease, for example — is poor diet, fueled by a lack of healthy food options in their neighborhoods.

“I could go into a supermarket, and I can tell everything about the people who live [in the area] based on what’s in their carts, based on what’s at eye level, what’s not at eye level,” said Phil Lempert, also known as the “Supermarket Guru.”

In retail, specific product placement — not just a store’s inventory — heavily influences a shopper’s experience. So shouldn’t responsible markets encourage shoppers to make better choices?

“There’s a lot of racism, to be honest, I think, behind these decisions, whether it’s unconscious or implicit,” said Andrea Richardson, a policy researcher focused on nutrition epidemiology at the Rand Corp. and professor at the Pardee Rand Graduate School. The presence of a supermarket in your neighborhood should signal that you aren’t living in a food desert, but, I wondered, if the supermarket isn’t guiding you toward more healthful food choices, you might as well be.

Chaseedaw and Lilie’s Shopping List

– Oat milk
– Lettuce
– Ezekiel bread
– Breakfast sausage (MorningStar)
– Fruit
– Cereal
– Cashew cheese
– Quinoa
– Snacks/chips
– Soda/juice
– Meat (fish)
– Mushrooms

So when I flew home for Thanksgiving, I enlisted my mother, Lilie — who always cared about her kids’ diets — to help with more research. I have vivid childhood memories of her scouring multiple grocery stores — often traveling to different parts of town — for the freshest ingredients when none were available close by. We set out one Sunday last fall to buy 12 items on a simple “healthy eating” shopping list at five locations of Stop & Shop, a supermarket chain with stores in a cross section of Boston neighborhoods.

First the good news: We were able to find every item we wanted at each store. But, just as I’d experienced in L.A., healthy foods were easier to find in higher-income neighborhoods. In lower-income areas, junk food was more likely to be front and center.

At the Stop & Shop I recall from my childhood in Jamaica Plain, the food choices had become much more balanced, with a plentiful organic food section in the front of the store. My mom can now buy fresher greens locally.

But that likely in part reflects the gentrification that has taken place since I was a kid. Jamaica Plain now has a median income of almost $77,000 — though the poverty rate is 18.3% and the aroma of Dominican and Haitian patties still scented the air as we approached the entrance.

Our next two stops were in even fancier areas, Brookline (median income over $115,000) and Somerville — both green oases compared with many of Boston’s grittier neighborhoods.

At the Brookline location, each aisle started with low-fat, low-sugar choices like Crystal Light and V8, and the candy section was minuscule. In Somerville, the produce section was spacious, leaving plenty of room to browse the bins of guava and dragon fruit.

Our next Stop & Shop was in South Boston — a working-class, Irish Catholic community. It was strikingly different than our first three stops. The organic section consisted mostly of breakfast bars and cereals. The produce section positioned caramels, candied apples, and pumpkin-spice doughnuts in a bin alongside regular apples — at the bargain price of two packages for $3. The “International Foods” aisle sold everything you need for a very American Taco Tuesday, while a big part of this section was dedicated to Italian and Irish foods.

In the Grove Hall neighborhood in Dorchester — a predominantly Black neighborhood with a median income of $55,000 — the offerings were downright dispiriting.

Soda was displayed prominently near one entrance. And as we walked the aisles it seemed that many of the “sale” items were sugary soda products, chips, or cookies. This store had a dizzying array of snack food options, including 20 kinds of Oreos. And there wasn’t an organic food section at all.

The chain has been “doing a lot of work” to make sure that stores are “culturally relevant and [reflect] the demographics of the neighborhood,” said Jennifer Brogan, director of Stop & Shop’s corporate external communications and community relations.

How a store is stocked depends on size, product movement, shelf size, and a mixture of customer feedback and data. That data comes from companies like IRi, a research company, that provides consumer, shopper, and retail market intelligence and analyses.

Lempert, the “supermarket guru,” further explained that companies and brands pay retailers “promotional dollars” to put their goods “at eye level” or on sale, or make them available for consumers to sample.

But in making these largely commercial decisions, markets make it more difficult for people in low-income areas to eat healthfully, encouraging those with poor diets to continue the habits that landed them with diet-related illnesses.

“It has been well documented that junk-food companies spend significantly more money advertising in certain communities,” said Kelly LeBlanc, director of nutrition at Oldways, a Boston-based food and nutrition nonprofit. A 2019 report, for instance, found that junk-food advertising disproportionately targeted Black and Hispanic youth.

Stop & Shop has started to try to redress the inequity, with changes coming first to its Dorchester location, including an in-store dietitian. The Grove Hall store also sends out an ad circular that features promotional pricing on better-for-you items, which may include fish, vegetables, and fruit. It has joined the Fresh Connect food prescription program that allows participating doctors to prescribe to patients a prepaid Visa card that can be used to purchase fruits and vegetables.

Still, why not simply cut down on the soda and bewildering number of Oreos, I wondered. “I think our job is to give customers a choice,” Brogan said. “I also think we have a responsibility to help them make healthier choices.”

I’m glad my mom taught me how to make those choices early on.

Another thing I learned: There’s a whole science behind how supermarkets are organized, and depending on where you live, that could say a lot about the surrounding area. So the next time I think about moving, the first place I’m heading to is the local supermarket because, as Lempert told me, “going to that community grocery store is going to tell you about the neighborhood.”

[This article was published by Chaseedaw Giles both in The Boston Globe and on KHN News and is republished on Medika.Life with permission.]

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The drug industry, patient advocates, and congressional Republicans have all attacked federal officials’ decision to decline routine Medicare coverage for a controversial Alzheimer’s drug. They’ve gone as far as to accuse them of tacit racism, ageism, and discrimination against the disabled — and hinted at a lawsuit — over the decision to pay only for patients taking the drug in a clinical trial.

The drug, Aduhelm, with a listed price tag of $28,500 a year, has had few takers in the medical world. Brain doctors are leery of administering the intravenous drug because it appears dangerous and largely ineffective. Many of the nation’s most prestigious hospitals — such as the Cleveland Clinic, Johns Hopkins Hospital, and Massachusetts General in Boston — have declined to offer it to patients.

While groups representing the pharmaceutical industry and patients press to undo Medicare’s decision, industry critics applaud the Centers for Medicare & Medicaid Services for throwing obstacles in the way of a drug they think the FDA should never have approved in the first place.

For the industry, the campaign has a broader existential target: to prevent CMS from using its payment decisions to keep FDA-approved drugs off the market. In recent years, FDA programs to speed approval of new drugs have led to a rash of entries with often minimal scientifically sound evidence to prove they work, critics say.

The FDA’s own expert panel recommended against approving Aduhelm for that reason. Last June, the agency approved it anyway.

CMS then announced Medicare would pay only when the drug was used in further clinical trials to assess its true benefit. That Jan. 11 announcement has drawn more than 9,000 comments to the agency’s website — a tsunami compared with most approval decisions. The remarks are roughly divided among pros and cons, and many appear to be organized by groups on the pro side of the debate (such as the Alzheimer’s Association) or those opposed (such as the nonprofit More Perfect Union). The agency could change or even reverse its decision, though experts believe the latter is unlikely.

“If the FDA were doing its job, CMS wouldn’t have had to step in. But good for the CMS, they are helping to protect the public from drugs whose harms outweigh benefits,” said Dr. Adriane Fugh-Berman, a Georgetown University professor of pharmacology who directs PharmedOut, a group that publicizes what it sees as poor industry practices.

Aduhelm is the first FDA approval for a class of laboratory-made antibodies designed to clear away so-called amyloid plaques, which gradually accumulate in the brains of people with Alzheimer’s disease.

In clinical trials, Aduhelm did well dissolving the plaques, but its impact on the functioning of patients in earlier stages of Alzheimer’s was so meager that an expert panel voted 10-0 (an 11th panelist was uncertain) in November 2020 to advise FDA to reject it. The science is unclear about whether the presence of such plaques — a so-called surrogate marker — correlates with the mental functioning of patients.

As such, the FDA gave “provisional approval” to Biogen, the maker of Aduhelm, allowing it nine years to provide evidence that the drug slows the progression of Alzheimer’s. In that period, Biogen would make far more money than if the application had been rejected. Even under the CMS decision, it would reap Medicare payments from whatever is used in clinical trials, which would need to include thousands of participants to assess the drug’s performance.

Drug companies and pharma investors have responded to CMS’ ruling with special alarm because they have spent decades improving their relationships with the FDA, only to have CMS seemingly pull the rug out by exerting its own power over an expensive drug.

“The drug companies are worried that this could be a precedent for other drugs. And it should be,” Fugh-Berman said. “This isn’t just about money; it’s about protecting the public.”

This “accelerated approval” employed for Aduhelm got its start in 1992 and is aimed at moving promising new classes of drugs to the public faster. Companies whose drugs go through the process — more than 250 drugs or vaccines have been approved so far — are supposed to quickly gather evidence that the products likely improve health once they’re on the market. But such follow-up studies often lag or are never performed. For example, the makers of the Duchenne muscular dystrophy drug eteplirsen, approved in 2016, didn’t start recruiting patients into a post-marketing trial until 2020 and don’t expect results until 2026.

Biogen originally said it would get confirmatory results for Aduhelm within seven years of approval. In response to the Medicare decision, it promised to trim that to four years. The company also hinted that it might sue the agency, calling its decision “arbitrary and capricious.”

In the meantime, patients eager to get access to the drug are furious about the coverage decision. Jim Taylor, a New Yorker whose wife, Geri, says she improved on Aduhelm during a clinical trial, said Medicare had made an “unconscionable decision” that puts Alzheimer’s patients “on a dark roller coaster.”

Many patients’ groups are organized or at least funded and fueled by drugmakers, providing sympathetic stories that buttress a manufacturer’s commercial interests. Advocacy groups also receive large donations from the makers of certain drugs. A 2020 report by UsAgainstAlzheimer’s shows at least $900,000 in donations from monoclonal antibody producers. The Alzheimer’s Association’s top corporate donors — Biogen, Lilly, Eisai, and Genentech — all have monoclonal antibody candidates and have provided the group $1.6 million in fiscal year 2021.

These donations are a tiny part of the group’s funding, its policy director, Robert Egge, told KHN, and any alignment of its position with industry is “coincidental, because of what we and our constituents believe is right.”

The Taylors appeared at an online news event with activists from UsAgainstAlzheimer’s and the National Minority Quality Forum, a group focused on health inequities, who argued that the decision discriminated against Black and Hispanic patients, who are more likely to suffer from Alzheimer’s and less likely to join clinical trials. In fact, CMS demanded that evidence for Aduhelm be collected more extensively from minority patients. Biogen’s two major trials of the drug included only 19 Black patients out of a total of 3,285.

Groups representing people with Down syndrome wrote more than 1,000 letters to CMS because its decision requires that confirmatory trials exclude people who have additional neurological conditions. Rep. Cathy McMorris Rodgers, a top drug industry cash recipient and the leading Republican on the House Energy and Commerce Committee with significant sway over pharma issues, said at a hearing last week that it was “extremely concerning and unacceptable” that Down syndrome patients would be ineligible.

But neither Biogen nor any other drug company has recruited Down syndrome patients for a major trial of a monoclonal antibody treatment. AC Immune, a Swiss company, conducted a safety study last year on 16 people with Down syndrome.

It’s not surprising that groups representing those suffering from Alzheimer’s placed high hopes on the monoclonal antibody drugs, which have seemed like a ray in the darkness for the estimated 2 million Americans with early Alzheimer’s symptoms.

When asked why his group is so gung-ho about a product in which the medical profession shows such little confidence, Egge said the drug seems to have some benefits and that its risks — especially to patients who lack other means to slow a miserable, deadly disease — may be exaggerated. He acknowledged that 40% of patients in the biggest Aduhelm trial experienced brain swelling or bleeding, but Biogen’s research showed these resolved with no apparent harm in most cases.

That said, the sluggish purchases of the drug — which earned a modest $1 million in the last quarter of 2021 — signal the market is responding to its deficiencies.

In response to the lackluster response, Biogen halved its initial $56,000 price to $28,500. If CMS had granted full approval, that would have been followed by “marketing, marketing, marketing,” said Dr. Joseph Ross, a public health professor at Yale University. Hospitals that wanted to attract patient business for a lucrative infusion — patients receiving the drug also require brain scans and other tests and monitoring — could advertise their willingness to give Aduhelm.

CMS’ decision came under a policy called coverage with evidence development. Though the program began in 2005, Aduhelm is by far the most important product CMS has declined to reimburse without further study.

The agency’s decision “is a little inelegant” because it puts the brakes on an FDA approval, said former CMS chief medical officer Dr. Sean Tunis, now a consultant and senior fellow at Tufts Medical Center, but “it seems completely justifiable since the evidence of benefit is pretty weak and the evidence of harm is pretty strong.”

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