Under President Biden, over 45 million people have coverage thanks to the Affordable Care Act

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OAKLAND, Calif. — Medi-Cal health coverage kicked in for Antonio Abundis just when the custodian needed it most.

Shortly after Abundis transitioned from limited to full-scope coverage in 2022 under California’s expansion of Medi-Cal to older residents without legal immigration status, he was diagnosed with leukemia, a cancer affecting the blood cells. The soft-spoken father of three took the news in stride as his doctor said his blood test suggested his cancer wasn’t advanced. His next steps were to get more tests and formulate a treatment plan with a cancer team at Epic Care in Emeryville. But all of that was derailed when he showed up last July for bloodwork at La Clínica de La Raza in Oakland and was told he was no longer on Medi-Cal.

“They never sent me a letter or anything telling me that I was removed,” Abundis, now 63, said in Spanish about losing his insurance.

Abundis is among hundreds of thousands of Latinos who have been kicked off Medi-Cal, California’s Medicaid program for low-income people, as states resume annual eligibility checks that were paused at the height of the covid-19 pandemic. The redetermination process, as it is known, has disproportionately affected Latinos, who make up a majority of Medi-Cal beneficiaries. According to the California Department of Health Care Services, more than 653,000 of the more than 1.3 million residents who have been disenrolled over eight months identify as Latino. Some, including Abundis, had only recently gained coverage as the state expanded Medi-Cal to residents without legal residency.

The collision of state and federal policies has not only set off enrollee whiplash but swelled demand for enrollment assistance as people are dropped from Medi-Cal, often for procedural issues. Health groups serving Latino communities report being inundated by requests for help, but at the same time, a state-sponsored survey suggests Hispanic households are more likely than other ethnic or racial groups to lose coverage because they’re less knowledgeable of the renewal process. They may also struggle to advocate for themselves.

Some health advocates are pressing for a pause. They warn that disenrollments will not only undercut the state’s effort to reduce the number of uninsured but could exacerbate health disparities, particularly for an ethnic group that bore the brunt of the pandemic. One national study found that Latinos in the U.S. were three times as likely to contract covid and twice as likely to die of it than the general population, in part because they tend to live in more crowded or multigenerational households and work in front-line jobs.

“These difficulties place all of us as a community in this more fragile state where the safety net means even more now,” said Seciah Aquino, executive director of the Latino Coalition for a Healthy California, a health advocacy organization.

Assembly member Tasha Boerner, an Encinitas Democrat, has introduced a bill that would slow disenrollments by allowing people 19 and older to keep their coverage automatically for 12 months and extend flexible pandemic-era policies such as not requiring proof of income in certain cases for renewals. That would benefit Hispanics, who make up nearly 51% of the Medi-Cal population compared with 40% of the overall state population. The governor’s office said it does not comment on pending legislation.

Tony Cava, a spokesperson for the Department of Health Care Services, said in an email that the agency has taken steps to increase the number of people automatically reenrolled in Medi-Cal and does not consider a pause necessary. The disenrollment rate dropped 10% from November to December, Cava said.

Still, state officials acknowledge more could be done to help people complete their applications. “We’re still not reaching certain pockets,” said Yingjia Huang, assistant deputy director of health care benefits and eligibility at DHCS.

California was the first state to expand Medicaid eligibility to all qualified immigrants regardless of legal status, phasing it in over several years: children in 2016, young adults ages 19-26 in 2020, people 50 and older in 2022, and all remaining adults this year.

But California, like other states, resumed eligibility checks last April, and the process is expected to continue through May. The state is now seeing disenrollment rates return to pre-pandemic levels, or 19%-20% of the Medi-Cal population each year, according to DHCS.

Jane Garcia, CEO of La Clínica de La Raza, testified before the Alameda County Board of Supervisors’ health committee that disenrollments continue to pose a challenge just as her team tries to enroll newly eligible residents. “It’s a heck of a load on our staff,” she told supervisors in January.

Although many beneficiaries no longer qualify because their incomes rose, more have been dropped from the rolls for failing to respond to notices or return paperwork. Often, renewal packets were sent to old addresses. Many find out they’ve lost coverage only upon seeking medical care.

“They knew something was happening,” said Janet Anwar, eligibility manager at Tiburcio Vasquez Health Center in the East Bay. “They didn’t know exactly what it was, how it was gonna affect them until actually the day came and they were disenrolled. And they were getting checked in or scheduling an appointment, then, ‘Hey, you lost your coverage.’”

But reenrollment is a challenge. A state-sponsored survey published Feb. 12 by the California Health Care Foundation found 30% of Hispanic households tried but were unable to complete a renewal form, compared with 19% for white non-Hispanic households. And 43% of Hispanics reported they would like to restart Medi-Cal but did not know how, versus 32% of people in white non-Hispanic households. 

The Abundis family is among those who don’t know where to get their questions answered. Though Abundis’ wife submitted the family’s Medi-Cal renewal paperwork in October, his wife and two children who still live with them were able to maintain coverage; Abundis was the only one dropped. He hasn’t received an explanation for being disenrolled nor been notified how to appeal or reapply. Now he worries he may not qualify on his own based on his roughly $36,000 annual income since the limit is $20,121 for an individual but $41,400 for a family of four.

It is likely an eligibility worker could check if he and his family qualify as a household or assist him with signing up for a private plan that can run less than $10 a month for premiums on Covered California. The health insurance exchange allows for special enrollment when people lose Medi-Cal or employer-based coverage. But Abundis assumes he won’t be able to afford premiums or copays, so he hasn’t applied.

Abundis, who first visited a doctor in May 2022 about unrelenting fatigue, constant pain in his back and knees, shortness of breath, and unexplained weight loss, worries he’s unable to afford medical care. La Clínica de La Raza, the community health clinic where he received blood testing, worked with him that day so he didn’t have to pay upfront, but he has since stopped seeking medical care.

More than a year after his diagnosis, Abundis still doesn’t know which stage cancer he has, or what his treatment plan should be. Though early cancer detection can lead to a higher chance of survival, some types of leukemia advance quickly. Without further testing, Abundis does not know his outlook.

“I’ve mentally prepared,” Abundis said of his cancer. “What happens, happens.”

Even those who seek help run into challenges. Marisol, a 53-year-old immigrant from Mexico who lives in Richmond, California, without legal permission, tried to reestablish coverage for months. Although the state saw a 26% drop in disenrollments from December to January, the share of Latinos disenrolled during that period remained nearly the same, suggesting they face more barriers to renewal.

Marisol, who requested her last name be withheld out of fear of deportation, also qualified for full-scope Medi-Cal during the state expansion to all immigrants 50 and older.

She received a packet in December letting her know that her household income exceeded Medi-Cal’s threshold — something she believed was an error. Marisol’s husband is out of work due to a back injury, she said, and her two children primarily support their family with part-time jobs at Ross Dress for Less.

That month, Marisol visited a Richmond branch office of the Contra Costa County Employment and Human Services Department, hoping to speak to an eligibility worker. Instead, she was told to leave her paperwork and to call a phone number to check her application status. Since then, she made numerous calls and spent hours on hold, but has not been able to speak with anyone.

County officials acknowledged longer wait times due to increased calls and said the average wait time is 30 minutes. “We understand community members’ frustration when they have difficulty getting through at times,” spokesperson Tish Gallegos wrote in an email. Gallegos noted the call center increases staffing during peak hours.

After El Tímpano reached out to the county for comment, Marisol said she was contacted by an eligibility worker, who explained that her family was dropped because their children had filed taxes separately, so the Medi-Cal system determined their eligibility individually rather than as one household. The county reinstated Marisol and her family on March 15.

Marisol said regaining Medi-Cal was a joyous but bittersweet ending to a months-long struggle, especially knowing that other people get dropped for procedural issues. “Sadly, there has to be pressure for them to fix something,” she said.

Jasmine Aguilera of El Tímpano is participating in the Journalism & Women Symposium’s Health Journalism Fellowship, supported by The Commonwealth Fund. Vanessa Flores, Katherine Nagasawa, and Hiram Alejandro Durán of El Tímpano contributed to this article.

Medi-Cal Resources (in Spanish):

How to apply for Medi-Cal

How to get insurance and low-cost health care in California

How to apply for Covered California

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 — Gov. Gavin Newsom’s administration unexpectedly yanked its support from a sweeping proposal that would have protected millions of California’s indoor workers from dangerous heat, saying it can’t endorse it without knowing the projected costs to the state.

But the board that oversees worker safety immediately defied the administration Thursday by unanimously approving new standards intended to protect people who work in poorly ventilated warehouses, steamy restaurant kitchens, and other indoor job sites.

The showdown represents a setback to the state’s climate and labor policy goals, and throws the fate of the rules into unknown territory. They had been expected to take effect by summer.

The move by the Democratic administration angered board members, who called it a “last-minute stunt” that undermines their regulatory process. It also sparked a protest by warehouse workers, who temporarily shut down the meeting as they waved signs declaring that “Heat Kills!” and loudly chanted, “What do we want? Heat protection! When do we want it? Now!”

“We got blindsided today, and I don’t think it was fair,” said David Thomas, chair of the California Occupational Safety and Health Standards Board, who became visibly upset several times during the meeting. “They hung our ass out to dry.”

The rules to protect indoor workers had been years in the making, but Newsom’s Department of Finance informed board staffers the night before the vote that it couldn’t sign off. They told us “the potential fiscal impacts on public sector entities haven’t been fully analyzed,” Eric Berg, deputy chief of health and research and standards at California’s Division of Occupational Safety and Health, reported to the board.

Newsom spokesperson Omar Rodriguez declined to comment. But Department of Finance spokesperson H.D. Palmer disputed the characterization of the administration’s concerns as “last-minute.” He said the administration has held meetings with board staffers for weeks to discuss estimates for how much it would cost the state to implement the rules in its own buildings. They provided the most recent estimates to Palmer’s department in February.

By law, the Department of Finance is required to approve a fiscal review for any regulation that would have significant economic impacts.

For example, the indoor heat standard proposal could cost the state billions of dollars just to keep its prisons cool enough for workers and inmates, Palmer said, based on the board’s estimate.

“We need to evaluate that. Is it too high? Is it on point?” he said. “This is not a decision made in an arbitrary manner or concerning policy. We did not have the time to do due diligence.”

Palmer would not comment on how much longer it would take to analyze the cost of the rule.

The deadline to keep the proposal on track is March 30. Otherwise the years-long regulatory process may have to start from scratch. But this is unknown territory, and board members said at the March 21 meeting they are not sure how to proceed. Some suggested they could adopt emergency regulations — but even that would take time.

The state has had heat standards on the books for outdoor workers since 2005, and indoor workplaces were supposed to be next. The proposed standard would require work sites to be cooled below 87 degrees Fahrenheit when employees are present and below 82 degrees in places where workers wear protective clothing or are exposed to radiant heat, such as furnaces. Buildings could be cooled with air conditioning, fans, misters, and other methods.

For businesses that couldn’t cool their workplaces sufficiently, such as laundries or restaurant kitchens, where commercial boilers, ovens, and fryers operate, the rule would offer them the option of giving workers cooldown areas and other relief.

Some businesses have expressed fear that they won’t be able to meet the requirements if they are enacted, even with the flexibility the regulation offers. Providing a place for a kitchen worker to cool down in a small restaurant, for example, might not be feasible, according to the California Restaurant Association.

But workers and labor advocates demanded at the March 21 meeting that the board take action, saying employers must protect workers and adapt to a warming climate.

“How many workers have to end up hospitalized or, even worse, end up dying because of heat illness, because there’s no protections put in place?” Yesenia Barrera, an organizer with the Warehouse Worker Resource Center, asked board members.

Heat stress can lead to heat exhaustion, heatstroke, cardiac arrest, and kidney failure. In 2021, the Centers for Disease Control and Prevention reported 1,600 heat-related deaths, which is likely an undercount because health care providers are not required to report them. It’s not clear how many of these deaths are related to work, either indoors or outdoors.

In California, 20 workers died from heat between 2010 and 2017, seven of them because of indoor heat, according to the Rand Corp., which analyzed the state’s proposed indoor heat rules.

Only two other states, Minnesota and Oregon, have adopted heat rules for indoor workers, according to the U.S. Occupational Safety and Health Administration. Nationally, legislation has stalled in Congress, and even though the Biden administration has initiated the long process of establishing national heat standards for outdoor and indoor work, the rules are likely to take years to finalize.

California regulators have crafted the indoor rules to complement the state’s protections for outdoor workers. Those say that when temperatures exceed 80 degrees, employers must provide shade and observe workers for signs of heat illness. At or above 95 degrees, they must come up with ways to prevent heat illness, such as reducing work hours or providing additional breaks. Colorado, Oregon, and Washington also have rules for outdoor workers.

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 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.

The Affordable Care Act was signed into law 14 years ago this week, and Health and Human Services Secretary Xavier Becerra joined KFF Health News’ Julie Rovner on this week’s “What the Health?” podcast to discuss its accomplishments so far — and the challenges that remain for the health law.

Meanwhile, Congress appears on its way to, finally, finishing the fiscal 2024 spending bills, including funding for HHS — without many of the reproductive or gender-affirming health care restrictions Republicans had sought.

This week’s panelists are Julie Rovner of KFF Health News, Mary Agnes Carey of KFF Health News, Tami Luhby of CNN, and Alice Miranda Ollstein of Politico.

Panelists Mary Agnes Carey KFF Health News @maryagnescarey Read Mary Agnes' stories. Tami Luhby CNN @Luhby Read Tami's stories. Alice Miranda Ollstein Politico @AliceOllstein Read Alice's stories.

Among the takeaways from this week’s episode:

• The Supreme Court will hear oral arguments next week in a case that could decide whether the abortion pill mifepristone will remain easily accessible. The case itself deals with national restrictions rather than an outright ban. But, depending on how the court rules, it could have far-reaching results — for instance, preventing people from getting the pills in the mail and limiting how far into pregnancy the treatment can be used.
• The case is about more than abortion. Drug companies and medical groups are concerned about the precedent it would set for courts to substitute their judgment for that of the FDA regarding drug approvals.
• Abortion-related ballot questions are in play in several states. The total number ultimately depends on the success of citizen-led efforts to collect signatures to gain a spot. Such efforts face opposition from anti-abortion groups and elected officials who don’t want the questions to reach the ballot box. Their fear, based on precedents, is that abortion protections tend to pass.
• The Biden administration issued an executive order this week to improve research on women’s health across the federal government. It has multiple components, including provisions intended to increase research on illnesses and diseases associated with postmenopausal women. It also aims to increase the number of women participating in clinical trials.
• This Week in Medical Misinformation: The Supreme Court heard oral arguments in the case Murthy v. Missouri. At issue is whether Biden administration officials overstepped their authority when asking companies like Meta, Google, and X to remove or downgrade content flagged as covid-19 misinformation.

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

Julie Rovner: The Washington Post’s “Arizona Lawmaker Tells Her Abortion Story to Show ‘Reality’ of Restrictions,” by Praveena Somasundaram. (Full speech here.)

Alice Miranda Ollstein: CNN’s “Why Your Doctor’s Office Is Spamming You With Appointment Reminders,” by Nathaniel Meyersohn.

Tami Luhby: KFF Health News’ “Georgia’s Medicaid Work Requirement Costing Taxpayers Millions Despite Low Enrollment,” by Andy Miller and Renuka Rayasam.

Mary Agnes Carey: The New York Times’ “When Medicaid Comes After the Family Home,” by Paula Span, and The AP’s “State Medicaid Offices Target Dead People’s Homes to Recoup Their Health Care Costs,” by Amanda Seitz.

Also mentioned on this week’s podcast:

• NPR’s “Standard Pregnancy Care Is Now Dangerously Disrupted in Louisiana, Report Reveals,” by Rosemary Westwood.
• The Washington Post’s “As the Cost of Storing Frozen Eggs Rises, Some Families Opt to Destroy Them,” by Amber Ferguson.

Credits Francis Ying Audio producer Stephanie Stapleton Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, 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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The new chief of the Social Security Administration outlined for senators Wednesday a plan to tackle overpayments and clawbacks, which affect millions of beneficiaries and, he said, have caused “grave injustices” and left people “in dire financial straits.”

As a joint investigation by KFF Health News and Cox Media Group television stations reported in September, the agency has harmed people it is supposed to help by reducing or halting benefit checks to recoup billions of dollars in payments it sent them but later said they should never have received.

Testifying at two Senate hearings on March 20, Social Security Commissioner Martin O’Malley said he is taking several steps to address the problem.

Starting next week, O’Malley said, the agency will stop “that clawback cruelty” of intercepting 100% of a beneficiary’s monthly Social Security check if they fail to respond to a demand for repayment.

Instead, the agency will default to withholding 10% of the recipient’s monthly benefits to recoup the debt, he said.

That would have helped Denise Woods, a Savannah, Georgia, woman who ended up living in her car after the SSA clawed back her entire monthly benefit to recoup a $58,000 overpayment. The agency restored some of her benefits after KFF Health News-CMG reported her story in December.

“People like Denise and others shouldn’t be penalized for situations they did not create,” Sen. Raphael Warnock (D-Ga.) said during one of the hearings. “I think it’s always important that we center the people as we discuss policy, remember the human face of the issues we talk about.”

On the question of who caused an overpayment — the beneficiary or someone at the agency — the burden of proof will shift from the beneficiary to the agency, O’Malley said.

The agency will make it much easier for people who believe they weren’t at fault or can’t repay the debt to seek a waiver, O’Malley said, which he later clarified means simplifying the form people must submit.

(WPXI-TV, Pittsburgh)

(WSB-TV, Atlanta)

O’Malley’s plan also includes making notices to beneficiaries easier to understand. Now, they’re “like Mad Libs designed by mad lawyers,” he testified.

In addition, the agency recently changed a policy to allow most beneficiaries to arrange repayment plans of as long as five years, up from three years, he said.

Millions of people a year have been hit with clawbacks, including retirees, people receiving Social Security disability benefits, and the poorest of the poor. The alleged debts can stretch back years or decades and reach tens of thousands of dollars or more.

At the end of the last fiscal year, uncollected overpayments totaled $23 billion.

In December, KFF Health News and Cox Media Group television stations obtained an internal agency document showing that more than 2 million Americans each year are subjected to overpayment demands, out of about 70 million beneficiaries.

O’Malley, a former Maryland governor who was sworn in as commissioner in December, had previewed his planned changes in a recent interview with KFF Health News.

On Wednesday, he appeared before the Senate Special Committee on Aging in the morning and the Finance Committee in the afternoon.

In hours of testimony, O’Malley said nothing about one of the reforms he heralded in the interview: limiting how far back in time the agency can reach to recover overpayments.

In an interview between the hearings, O’Malley said, “That’s still being unpacked and may well require a change in regulation.” He said he expected an announcement within a few months.

O’Malley said he didn’t know how far back the limit would go but noted that other agencies tend to have a look-back period of four years.

Establishing a statute of limitations is one of the most important steps the government can take to address overpayments, Boston University economist Laurence Kotlikoff, who has studied and written about clawbacks, said in an interview.

“If Social Security can’t figure out its mistakes within 18 months, it should be on them,” Kotlikoff said.

Having to repay a year and a half of benefits could cost people their homes, Kotlikoff said.

Rebecca Vallas, who has helped beneficiaries navigate overpayments as a legal aid attorney and has called for reform of clawbacks, said the steps O’Malley announced “are nothing short of historic.”

Shifting the burden of proof “is a dramatic change,” said David Camp, chief executive of the National Organization of Social Security Claimants’ Representatives. While a lot is riding on the details and how O’Malley’s plans are implemented, that change alone should lead to “a very different experience” for anyone challenging a clawback, Camp added.

(WSOC-TV, Charlotte)

In the past, there has been a gap between what the agency says and what it does. O’Malley said 10% has been the default withholding rate in one of the Social Security programs, Supplemental Security Income. But KFF Health News and Cox Media Group have found people whose entire SSI benefit checks were suspended on account of alleged overpayments.

The changes announced won’t apply automatically to people already on a repayment plan or whose monthly benefits are already being docked, O’Malley said outside the hearings. To take advantage of the new terms, beneficiaries would have to contact the agency and request relief, he said. The agency will notify people that they have that option, he added.

O’Malley implored lawmakers to increase funding for the agency. On average, customers trying to reach the agency by phone wait 38 minutes, he said. Most who call the 800 number “hang up in disgust after waiting far too long,” he said in written testimony.

Trouble getting through to anyone at the agency can contribute to overpayments and make it harder for recipients to resolve them.

Sen. Bob Casey (D-Pa.), chair of the Special Committee on Aging, said that unless Congress provides adequate funding for the agency, fixing problems “will be really difficult.”

Sen. Mike Braun of Indiana, the top Republican on that committee, called for looking at how the agency is run “before we throw more money at it.” He suggested focusing on what can be done to prevent overpayments “rather than forgiving them once they occur” or trying to claw them back, “which is insult on top of injury.”

O’Malley noted that the Social Security Administration recently sought public comment on a long-delayed plan to reduce overpayments by automatically obtaining monthly wage and employment data on beneficiaries.

Finance Committee Chairman Ron Wyden (D-Ore.) praised O’Malley for tackling what Wyden called “the scourge of overpayments.”

“I think you’re really off to a strong start in terms of righting wrongs,” Wyden 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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Online stores sprang up during the covid-19 pandemic’s telehealth boom touting testosterone as a cure-all for men’s age-related illnesses — despite FDA rules issued years ago restricting such “low testosterone” advertising.

In ads on Google, Facebook, and elsewhere, testosterone telemedicine websites may promise a quick fix for sluggishness and low libido in men. But evidence for that is lacking, physicians said, and the midlife malaise for which testosterone is being touted as a solution is more likely caused by chronic medical conditions, poor diet, or a sedentary lifestyle. In fact, doctors urge caution — and the FDA recommends that all testosterone supplements carry a warning that they may increase the risk of heart attack and stroke.

Valid medical reasons do exist for treating some men with testosterone. The hormone as a medication has existed for decades, and today’s patients include men with hypogonadism, some transgender men who use it to help transition physically, and, sometimes, women dealing with menopausal symptoms. It has also been used for decades by bodybuilders and athletes to enhance strength.

However, online dispensaries can overplay the idea of what is sometimes called “male menopause,” or even “manopause,” to drive sales of highly profitable testosterone-boosting injectables, often ignoring safety guidelines that should prevent healthy men from using the hormone. Some of the websites target military veterans.

“I have seen ads online that do cross the line,” said Steven Nissen, a physician and the chief academic officer for the Heart, Vascular, and Thoracic Institute at the Cleveland Clinic. “For mood and low energy, prescribing testosterone provides little to no benefit. They are promoting testosterone for indications that are not on the label.”

Testosterone telehealth websites almost all cite one study published in 2002 by New England Research Institutes scientists who found testosterone levels drop 1% a year in men over 40. Stefan Schlatt, director of the Center for Reproductive Medicine and Andrology at the University of Muenster in Germany, said the data behind the statistic included older men in deteriorating health whose levels declined because of illnesses.

“Healthy men do not show a drop,” he said.

That 2002 study led to a flood of “low-T” ads on U.S. television — ads that were later banned by the FDA in a 2015 ruling that accused the pharmaceutical industry of exaggerating the low-T phenomenon to scare men into buying drugs. According to another study, the market for testosterone supplements stood at $1.85 billion in 2023.

The deluge of ads “has fueled demand for a largely uninsured product, allowing for high markups,” said Geoffrey Joyce, director of health policy at the USC Schaeffer Center for Health Policy & Economics and a research associate at the National Bureau of Economic Research. “The primary driver is manufactured demand.”

Barbara Mintzes, a professor of evidence-based pharmaceutical policy at the University of Sydney’s Charles Perkins Centre in Australia, said low testosterone should really be seen as a sign of a condition that needs to be treated. She said diabetes, heart disease, high blood pressure, obesity, exposure to toxic chemicals like PFAS, and stress can all reduce testosterone levels.

Several websites reviewed by KFF Health News brand themselves as news and fitness magazines, with advertisements embedded in articles steering readers toward order forms for testosterone replacement therapy, shorthanded as TRT. The sites’ prices for TRT range from $120 to $135 a month, not including initial mail-back blood tests for around $60. Some sites promise increased libido and reduced stomach fat.

Male Excel’s ads on Google, for example, say TRT “improves mood” and “restores vitality.” And its site says testosterone treatment will provide “muscular definition,” “weight loss,” “explosive drive,” “deeper sleep,” and “restored energy” above a link to a free assessment on its online telehealth platform. Craig Larsen, the company’s CEO, did not reply to several attempts to contact him by phone and email.

Both Male Excel and Hone Health are among the sites that pitch to military veterans. Hone Health included a video of a veteran who said he was refused testosterone treatment by a Department of Veterans Affairs hospital.

Saad Alam, CEO and co-founder of Hone, said that his company is what he called a “conservative” player in the market. He said that Hone prescribes only to men who are hypogonadal and tests men every 90 days, unlike other companies that operate telehealth websites as what he called a “cash grab.”

“I agree that patients should be treated by their doctors. But the U.S. medical system isn’t at a point where it can service men who have this problem, and some endocrinologists would rather treat patients who are higher-profit,” Hone said. “That’s why people are coming to us.”

One popular form of TRT is injectable testosterone cypionate. According to the Medicare average sales price database, it costs $0.027 per milligram. Online purveyors who sell the drug directly to consumers in 200 mg/mL vials for an average price of $129 per month are charging the equivalent of $1.55 per mg — a markup of more than 50 times the average Medicare price.

According to a 2022 study, the TRT telehealth websites create a way to circumvent doctors who refuse to prescribe the hormone. In that study, Justin Dubin, a urologist at the Memorial Healthcare System in Florida, posed as an online mystery shopper. He reported an above-normal testosterone level, and stated his desire to start a family, even though such therapy can curb sperm production. But six of the seven unnamed online TRT clinics prescribed him testosterone via a medical professional.

“And that’s concerning,” Dubin said. “Telemedicine helps men with hypogonadism who might be too embarrassed to discuss erectile dysfunction. But we need to do a better job of understanding the appropriateness of care.”

Still, while the FDA doesn’t allow off-label marketing, it does allow such off-label prescriptions.

Off-label use of testosterone replacement has become especially commonplace among veterans. And among male service members who received TRT in 2017, fewer than half met the clinical practice guidelines, according to a report by the U.S. military.

Phil Palmer, a 41-year-old Marine Corps veteran who lives outside Charleston, South Carolina, said he pays out-of-pocket for bloodwork and prescriptions for a pellet skin-implant form of testosterone and for clomiphene, a drug that can help counter the male infertility that is a side effect of testosterone treatment. He said the treatment appeals to him and other veterans dealing with the aftermath of military service.

“The environment we served in and stress levels have a lot to do with it,” Palmer said. “We were exposed to burn pits. The military doesn’t teach you to eat well — we ate a lot of processed food.”

In medical settings, TRT can speed recovery of soldiers who have bone density issues or spinal cord injuries, said Mark Peterson, a professor of physical medicine and rehabilitation at the University of Michigan Medical School. But, he said, “for men in the normal-T range, using an online prescription to buy testosterone to reduce stomach fat can be counterproductive.”

Those who use it also risk having to take testosterone medication indefinitely, because TRT can cause the body to cease its own production of the hormone.

Palmer, who founded a nonprofit that helps veterans heal through exercise, nutrition, and mentorship, said the medication has been helpful for him but urges fellow veterans to seek care from their doctors rather than what he called “bro science” websites touting testosterone.

“It’s not a magic pill,” he 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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From her base in Gallup, New Mexico, Melissa Wyaco supervises about two dozen public health nurses who crisscross the sprawling Navajo Nation searching for patients who have tested positive for or been exposed to a disease once nearly eradicated in the U.S.: syphilis.

Infection rates in this region of the Southwest — the 27,000-square-mile reservation encompasses parts of Arizona, New Mexico, and Utah — are among the nation’s highest. And they’re far worse than anything Wyaco, who is from Zuni Pueblo (about 40 miles south of Gallup) and is the nurse consultant for the Navajo Area Indian Health Service, has seen in her 30-year nursing career.

Syphilis infections nationwide have climbed rapidly in recent years, reaching a 70-year high in 2022, according to the most recent data from the Centers for Disease Control and Prevention. That rise comes amid a shortage of penicillin, the most effective treatment. Simultaneously, congenital syphilis — syphilis passed from a pregnant person to a baby — has similarly spun out of control. Untreated, congenital syphilis can cause bone deformities, severe anemia, jaundice, meningitis, and even death. In 2022, the CDC recorded 231 stillbirths and 51 infant deaths caused by syphilis, out of 3,761 congenital syphilis cases reported that year.

And while infections have risen across the U.S., no demographic has been hit harder than Native Americans. The CDC data released in January shows that the rate of congenital syphilis among American Indians and Alaska Natives was triple the rate for African Americans and nearly 12 times the rate for white babies in 2022.

“This is a disease we thought we were going to eradicate not that long ago, because we have a treatment that works really well,” said Meghan Curry O’Connell, a member of the Cherokee Nation and chief public health officer at the Great Plains Tribal Leaders’ Health Board, who is based in South Dakota.

Instead, the rate of congenital syphilis infections among Native Americans (644.7 cases per 100,000 people in 2022) is now comparable to the rate for the entire U.S. population in 1941 (651.1) — before doctors began using penicillin to cure syphilis. (The rate fell to 6.6 nationally in 1983.)

O’Connell said that’s why the Great Plains Tribal Leaders’ Health Board and tribal leaders from North Dakota, South Dakota, Nebraska, and Iowa have asked federal Health and Human Services Secretary Xavier Becerra to declare a public health emergency in their states. A declaration would expand staffing, funding, and access to contact tracing data across their region.

“Syphilis is deadly to babies. It’s highly infectious, and it causes very severe outcomes,” O’Connell said. “We need to have people doing boots-on-the-ground work” right now.

In 2022, New Mexico reported the highest rate of congenital syphilis among states. Primary and secondary syphilis infections, which are not passed to infants, were highest in South Dakota, which had the second-highest rate of congenital syphilis in 2022. In 2021, the most recent year for which demographic data is available, South Dakota had the second-worst rate nationwide (after the District of Columbia) — and numbers were highest among the state’s large Native population.

In an October news release, the New Mexico Department of Health noted that the state had “reported a 660% increase in cases of congenital syphilis over the past five years.” A year earlier, in 2017, New Mexico reported only one case — but by 2020, that number had risen to 43, then to 76 in 2022.

Starting in 2020, the covid-19 pandemic made things worse. “Public health across the country got almost 95% diverted to doing covid care,” said Jonathan Iralu, the Indian Health Service chief clinical consultant for infectious diseases, who is based at the Gallup Indian Medical Center. “This was a really hard-hit area.”

At one point early in the pandemic, the Navajo Nation reported the highest covid rate in the U.S. Iralu suspects patients with syphilis symptoms may have avoided seeing a doctor for fear of catching covid. That said, he doesn’t think it’s fair to blame the pandemic for the high rates of syphilis, or the high rates of women passing infections to their babies during pregnancy, that continue four years later.

Native Americans are more likely to live in rural areas, far from hospital obstetric units, than any other racial or ethnic group. As a result, many do not receive prenatal care until later in pregnancy, if at all. That often means providers cannot test and treat patients for syphilis before delivery.

In New Mexico, 23% of patients did not receive prenatal care until the fifth month of pregnancy or later, or received fewer than half the appropriate number of visits for the infant’s gestational age in 2023 (the national average is less than 16%).

Inadequate prenatal care is especially risky for Native Americans, who have a greater chance than other ethnic groups of passing on a syphilis infection if they become pregnant. That’s because, among Native communities, syphilis infections are just as common in women as in men. In every other ethnic group, men are at least twice as likely to contract syphilis, largely because men who have sex with men are more susceptible to infection. O’Connell said it’s not clear why women in Native communities are disproportionately affected by syphilis.

“The Navajo Nation is a maternal health desert,” said Amanda Singer, a Diné (Navajo) doula and lactation counselor in Arizona who is also executive director of the Navajo Breastfeeding Coalition/Diné Doula Collective. On some parts of the reservation, patients have to drive more than 100 miles to reach obstetric services. “There’s a really high number of pregnant women who don’t get prenatal care throughout the whole pregnancy.”

She said that’s due not only to a lack of services but also to a mistrust of health care providers who don’t understand Native culture. Some also worry that providers might report patients who use illicit substances during their pregnancies to the police or child welfare. But it’s also because of a shrinking network of facilities: Two of the Navajo area’s labor and delivery wards have closed in the past decade. According to a recent report, more than half of U.S. rural hospitals no longer offer labor and delivery services.

Singer and the other doulas in her network believe New Mexico and Arizona could combat the syphilis epidemic by expanding access to prenatal care in rural Indigenous communities. Singer imagines a system in which midwives, doulas, and lactation counselors are able to travel to families and offer prenatal care “in their own home.”

O’Connell added that data-sharing arrangements between tribes and state, federal, and IHS offices vary widely across the country, but have posed an additional challenge to tackling the epidemic in some Native communities, including her own. Her Tribal Epidemiology Center is fighting to access South Dakota’s state data.

In the Navajo Nation and surrounding area, Iralu said, IHS infectious disease doctors meet with tribal officials every month, and he recommends that all IHS service areas have regular meetings of state, tribal, and IHS providers and public health nurses to ensure every pregnant person in those areas has been tested and treated.

IHS now recommends all patients be tested for syphilis yearly, and tests pregnant patients three times. It also expanded rapid and express testing and started offering DoxyPEP, an antibiotic that transgender women and men who have sex with men can take up to 72 hours after sex and that has been shown to reduce syphilis transmission by 87%. But perhaps the most significant change IHS has made is offering testing and treatment in the field.

Today, the public health nurses Wyaco supervises can test and treat patients for syphilis at home — something she couldn’t do when she was one of them just three years ago.

“Why not bring the penicillin to the patient instead of trying to drag the patient in to the penicillin?” said Iralu.

It’s not a tactic IHS uses for every patient, but it’s been effective in treating those who might pass an infection on to a partner or baby.

Iralu expects to see an expansion in street medicine in urban areas and van outreach in rural areas, in coming years, bringing more testing to communities — as well as an effort to put tests in patients’ hands through vending machines and the mail.

“This is a radical departure from our past,” he said. “But I think that’s the wave of the future.”

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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We cut the federal deficit by $160 billion because Medicare will no longer have to pay those exorbitant prices to Big Pharma.

President Joe Biden in his State of the Union address, March 7, 2024

President Joe Biden has been making his case for reelection to voters by telling them he is good for their pocketbooks, including at the pharmacy counter.

During his State of the Union address, Biden said legislation he signed gave Medicare the power to negotiate lower prescription drug prices.

“That’s not just saving seniors money and taxpayers money,” Biden said, a reference to the Inflation Reduction Act, which passed in 2022. “We cut the federal deficit by $160 billion because Medicare will no longer have to pay those exorbitant prices to Big Pharma.” 

Biden added, “This year, Medicare is negotiating lower prices for some of the costliest drugs.” He called for giving Medicare the power to negotiate prices for 500 drugs over the next decade.

In August, the federal government announced the first 10 drugs that it will negotiate for lower prices as part of the Inflation Reduction Act. A respected source of legislation analysis projects the change will save the government a lot of money, but those dollars haven’t been realized.

There is a reason Biden touted this legislation during his address: Polling by KFF shows that people, regardless of their political leanings, overwhelmingly support the idea of allowing Medicare to negotiate drug prices. But most people don’t know that such negotiations are underway.

Impact of Inflation Reduction Act Will Take Many Years

In August 2022, Biden signed the Inflation Reduction Act, which will allow the federal government to negotiate prices with drugmakers for Medicare. Biden kept his promise to repeal the law that barred Medicare from negotiating prices. 

The nonpartisan Congressional Budget Office projects a 10-year cumulative savings of $161.7 billion from two provisions of the Iaw: a phased-in effort to negotiate with drugmakers for lower prices and a rebate for price increases above the overall inflation rate. (The White House has previously pointed to this analysis.)

However, not all the savings will be permanent. About $44.3 billion over 10 years will be funneled into related provisions that expand access and lower out-of-pocket costs for Medicare beneficiaries.

“Negotiations are still ramping up, so the savings generated by the Inflation Reduction Act negotiation provisions are still in the future,” said Matthew Fiedler, a Brookings Institution expert on the economy and health studies. “The Congressional Budget Office did expect the inflation rebate provisions of the IRA (which are encompassed in the $160 billion) to begin generating modest savings during 2023 and 2024, but there, too, most of the savings are in the future.”

The legislation involves price negotiations for 10 brand-name medications that lack generic equivalents. Those drugs include the blood thinners Eliquis and Xarelto; the diabetes drugs Januvia, Jardiance, and NovoLog; Enbrel, for rheumatoid arthritis; the blood-cancer drug Imbruvica; Entresto, for heart failure; Stelara, for psoriasis and Crohn’s disease; and Farxiga, a drug for diabetes, heart failure, and chronic kidney disease.

The CBO has estimated that the negotiated prices will translate to nearly $100 billion in federal savings from 2026 to 2031.

“Biden is jumping the gun on claiming savings for seniors,” said Joe Antos, an expert on health care at the conservative American Enterprise Institute. “Price negotiations haven’t been completed; the new prices for selected drugs aren’t in place until 2026.”

Biden said the legislation is “saving seniors money and taxpayers money,” which could be interpreted to mean it is saving them money now on prescription drugs. But the negotiations for these drugs would define the prices to be paid for prescriptions starting in 2026. For 2027 and 2028, 15 more drugs per year will be chosen for price negotiations. Starting in 2029, 20 more will be chosen a year. 

That said, other provisions in the legislation have already led to savings for seniors, said Tricia Neuman, a senior vice president at KFF:

• Certain recommended adult vaccines covered under Medicare Part D, such as shingles, are covered at no cost. 
• The act established a cap on Part D spending that begins phasing in this year. This year, Part D enrollees will pay no more than $3,300 on brand-name drugs. In 2025, the cap for all covered Part D drugs drops to $2,000.
• The Inflation Reduction Act included the $35-a-month insulin cap, improvements in coverage for low-income beneficiaries, and the inflation rebate.

When we pressed the White House to provide examples of savings that have already occurred, a spokesperson pointed to the insulin cap.

Meanwhile, Antos said that although the Part D rebate has kicked in, the savings come from a small subset of Part D drugs taken by older Americans and that the government reaps the savings, not older Americans.  

“There is no reason to expect that seniors will see significant savings since there’s no obligation for the feds to distribute savings to Part D enrollees,” Antos said.

Our Ruling

Biden said, “We cut the federal deficit by $160 billion because Medicare will no longer have to pay those exorbitant prices to Big Pharma.”

Biden’s statement omits the time frame; the savings have not been realized. The CBO projected 10-year cumulative savings of $161.7 billion from two provisions of the legislation. And as for saving older Americans money on their prescriptions, that hasn’t happened yet. The federal government is negotiating the first 10 drugs with the new prices set to take effect in 2026.

We rate this statement Half True.

Sources

KFF, “3 Charts: Medicare Drug Price Negotiations,” Jan. 31, 2024

White House, “Budget Cuts Wasteful Spending on Big Pharma, Big Oil, and Other Special Interests, Cracks Down on Systemic Fraud, and Makes Programs More Cost Effective,” March 9, 2023

Email interview, Matthew Fiedler, senior fellow in economic studies, Center on Health Policy at The Brookings Institution, March 8, 2024

Email interview, Tricia Neuman, a senior vice president of KFF and the executive director of its Program on Medicare Policy, March 8, 2024

Email interview, Joe Antos, a senior fellow at the American Enterprise Institute, March 8, 2024

White House, statement to PolitiFact, March 8, 2024

President Joe Biden, remarks on health care costs, Aug. 29, 2023

Congressional Budget Office, “Estimated Budgetary Effects of Public Law 117-169, to Provide for Reconciliation Pursuant to Title II of S. Con. Res. 14,” Sept. 7, 2022

Congressional Budget Office, “How CBO Estimated the Budgetary Impact of Key Prescription Drug Provisions in the 2022 Reconciliation Act,” February 2023

KFF, “Explaining the Prescription Drug Provisions in the Inflation Reduction Act,” Jan. 24, 2023

NBC News, “Medicare Names First 10 Drugs up for Price Negotiations With the Government,” Aug. 29, 2023

PolitiFact, “Democrats’ Inflation Reduction Act Will Allow Medicare to Negotiate Drug Prices,” Aug. 10, 2022

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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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