Category: From California Healthline.org

When patients walked into Planned Parenthood clinics, a consumer data company sold their precise locations to anti-abortion groups for targeted ads.

When patients picked up prescriptions for testosterone replacement therapy, law enforcement retrieved their names and addresses without a warrant.

And when a father was arrested by immigration authorities, agents allegedly accessed his personal information from a medical clinic where he received diabetes treatment.

Progressive California lawmakers have proposed a number of bills aimed at bolstering privacy protections for women, transgender people, and immigrants in response to such intrusions by anti-abortion groups, conservative states, and federal law enforcement agencies as President Donald Trump declares the nation “will be woke no longer” and flexes his executive power to roll back rights.

Democrats have supermajorities in the state legislature, but even if they pass the proposals, they may first need to lobby one of their own: Gov. Gavin Newsom, who has noticeably tempered his once harsh criticism of Trump.

Last month, the Democratic governor issued a rare veto threat against a bill that would expand the state’s sanctuary law to limit cooperation between state prisons and federal immigration agents. And Newsom recently called transgender athletes’ participation in women’s sports “deeply unfair” on his new podcast with guest Charlie Kirk, a founder of the conservative group Turning Point USA. Newsom went on to tell Kirk that he had a “hard time with” the way the right talks about transgender people.

Billions of dollars are also on the line for California. Newsom visited the White House last month seeking unconditional aid for wildfire victims in Los Angeles, and the state relies on Washington for over 60% of its Medicaid budget, which is vulnerable to significant cuts under the GOP’s budget blueprint.

“California’s leaders have not been as aggressive, out of recognition that there are many things that the state needs federal cooperation on,” said Thad Kousser, a political science professor at the University of California-San Diego.

A Newsom spokesperson declined to comment on pending legislation. He has a track record of supporting abortion, transgender, and immigrant rights.

Since taking office, Trump has granted the Elon Musk-controlled Department of Government Efficiency — created through a Trump executive order — access to previously restricted data, including medical information, raising concerns that sensitive information could be exposed without proper safeguards. 

The White House did not respond to requests for comment.

While most Americans are familiar with the Health Insurance Portability and Accountability Act, known as HIPAA, it offers only narrow protection for patients in health care settings. There’s no comprehensive federal law protecting data privacy.

Health care information has increasingly become a tool of surveillance and enforcement, and in states that have banned certain medical treatments or toughened immigration laws, vulnerable populations are at greater risk, said Suzanne Bernstein, a health privacy rights expert with the Electronic Privacy Information Center.

Progressive Democrats are concerned that personal information and people’s medical decisions could be used to monitor or criminalize patients, facilitate arrests in or near health care facilities, or jeopardize access to health care services.

They and health privacy advocates say now is the time to shore up protections for the nearly 2 million immigrants living in California without authorization, the more than 200,000 transgender adults in the state, and thousands of people — living in the state or out of state — in need of abortion care in California each year. Some of these laws could take effect immediately if signed.

“This is about making sure that people are able to access critical health care in California and to take the politics out of our hospitals and health clinics,” said state Sen. Jesse Arreguín, who hopes the governor would sign his bill to protect immigrants.

The bills are expected to be debated in Sacramento in the coming months.

Since the Supreme Court overturned the constitutional right to abortion, anti-abortion groups have purchased location information from consumer data companies to target people seeking abortion care with anti-abortion ads. And authorities in states with abortion bans have used cellphone data to enforce laws beyond their borders.

A bill introduced by state Assembly member Rebecca Bauer-Kahan, AB 45, would make geofencing, the collection of phone location by data brokers, illegal around health care facilities that provide in-person services. It would also prevent reproductive health information collected during research from being disclosed in response to out-of-state requests.

Conservative organizations said the proposal would single them out by restricting their ability to inform women about alternatives to abortion, including services offered by crisis pregnancy centers.

“I think that could very well be a First Amendment violation,” said Jonathan Keller, president of the California Family Council, a statewide anti-abortion nonprofit. “It doesn’t seem like the bill would be prohibiting or putting any restrictions on a group like Planned Parenthood if they wanted to market or target to a local high school or college.”

So far this year, lawmakers in 49 states have introduced more than 700 anti-transgender bills, seeking to ban gender-affirming care, prohibit gender identity education in schools, or restrict transgender students from participating in sports, according to the Trans Legislation Tracker, a national research organization tracking bills affecting transgender people. Transgender adults represent less than 1% of the U.S. population.

And some states with bans or restrictions on gender-affirming care have been targeting health care data. In 2023, Republican Gov. Ron DeSantis requested that Florida universities release data on the number of individuals who have been diagnosed with gender dysphoria or received treatment at campus clinics. That same year, Missouri’s Republican attorney general, Andrew Bailey, submitted 54 requests to one hospital seeking information about gender-affirming care procedures.

Trump has issued a series of executive orders to ban access to gender-affirming care for minors. Federal judges have temporarily blocked some portions of his orders.

To guard against other states that criminalize or ban gender-affirming care, California state Sen. Scott Wiener wants to expand current protections for minors to include adults.

His bill, SB 497, would require law enforcement to obtain a warrant to access state databases on gender-affirming care and make it a misdemeanor to release the data to unauthorized parties. It would also prohibit health care providers, employers, and insurers from releasing information about a person who seeks or obtains gender-affirming physical and mental health care to an agency or individual from another state.

“We want to make sure that we are as comprehensively as possible shielding trans people from hate emanating from the federal government, other states, and private parties,” Wiener said.

Keller countered that authorities in states with bans on abortion or gender-affirming care should have access to medical information as they investigate providers who could harm patients or coerce them into procedures against their will. He cited a lawsuit against Kaiser Permanente over a teenager who detransitioned after undergoing gender-affirming care. A 2015 survey found it was uncommon for people undergoing gender-affirming care to decide to permanently detransition.

“The only way that you’re able to uncover that level of widespread malpractice and malfeasance is if these health care records are able to be accessed,” Keller said.

The California Family Council plans to oppose both bills.

Earlier this year, Trump rescinded a long-standing policy of not making immigration arrests near hospitals, schools, or churches. The decision has providers fearful that Immigration and Customs Enforcement agents will disrupt their work at health facilities and prompt immigrants to skip medical care — for themselves or, of particular concern, their children.

Anticipating the move, California’s Democratic attorney general, Rob Bonta, issued guidance in December advising health care providers how best to respond if ICE comes to their doorstep. But while private entities are encouraged to follow these policies, only state-run facilities are required to adopt them.

“Some health care providers have implemented them, but not everyone has,” Arreguín said.

Arreguín’s SB 81 would require all health care facilities, including hospitals and community-based clinics, to follow state guidance to limit cooperation with immigration authorities. It would also prohibit providers from granting access to private areas or places where a patient is actively receiving treatment or care, unless there’s a warrant.

Another immigration bill, AB 421, would limit the sharing of local law enforcement information if agents plan to make an arrest within a one-mile radius of a hospital or medical office, a child care or day care facility, a religious institution, or a place of worship. California law enforcement has some discretion to share information with immigration agents when an individual has been convicted of a serious crime or felony.

Kousser said immigration is more complicated for California politicians than health privacy. Although a February poll by the Public Policy Institute of California found that 7 in 10 Californians think immigrants are a benefit to the state, Kousser said that lawmakers, especially those who won by narrow margins in contested districts, still have to make tough political choices.

Senate Republican leader Brian Jones, who represents a predominantly Democratic district in San Diego, is proposing to change California’s sanctuary policies to require law enforcement to share information with ICE when a person has been convicted of a serious crime.

“When these violent felons are released from local custody, they go right back into the communities that they came from to re-victimize those same immigrant communities,” Jones said.

But Jones acknowledged the need for nuance when it comes to health privacy.

“Look, the bottom line for me on this immigration reform in America is it needs to be humanitarian and it needs to make sense,” Jones said. “And so, if there are areas that we need to protect folks, it might make sense.”

After a patch of ice sent Marc Durocher hurtling to the ground, and doctors at UMass Memorial Medical Center repaired the broken hip that resulted, the 75-year-old electrician found himself at a crossroads.

He didn’t need to be in the hospital any longer. But he was still in pain, unsteady on his feet, unready for independence.

Patients nationwide often stall at this intersection, stuck in the hospital for days or weeks because nursing homes and physical rehabilitation facilities are full. Yet when Durocher was ready for discharge in late January, a clinician came by with a surprising path forward: Want to go home?

Specifically, he was invited to join a research study at UMass Chan Medical School in Worcester, Massachusetts, testing the concept of “SNF at home” or “subacute at home,” in which services typically provided at a skilled nursing facility are instead offered in the home, with visits from caregivers and remote monitoring technology.

Durocher hesitated, worried he might not get the care he needed, but he and his wife, Jeanne, ultimately decided to try it. What could be better than recovering at his home in Auburn with his dog, Buddy?

Such rehab at home is underway in various parts of the country — including New York, Pennsylvania, and Wisconsin — as a solution to a shortage of nursing home and rehab beds for patients too sick to go home but not sick enough to need hospitalization.

Staffing shortages at post-acute facilities around the country led to a 24% increase over three years in hospital length of stay among patients who need skilled nursing care, according to a 2022 analysis. With no place to go, these patients occupy expensive hospital beds they don’t need, while others wait in emergency rooms for those spots. In Massachusetts, for example, at least 1,995 patients were awaiting hospital discharge in December, according to a survey of hospitals by the Massachusetts Health & Hospital Association.

Offering intensive services and remote monitoring technology in the home can work as an alternative — especially in rural areas, where nursing homes are closing at a faster rate than in cities and patients’ relatives often must travel far to visit. For patients of the Marshfield Clinic Health System who live in rural parts of Wisconsin, the clinic’s six-year-old SNF-at-home program is often the only option, said Swetha Gudibanda, medical director of the hospital-at-home program.

“This is going to be the future of medicine,” Gudibanda said.

But the concept is new, an outgrowth of hospital-at-home services expanded by a covid-19 pandemic-inspired Medicare waiver. SNF-at-home care remains uncommon, lost in a fiscal and regulatory netherworld. No federal standards spell out how to run these programs, which patients should qualify, or what services to offer. No reimbursement mechanism exists, so fee-for-service Medicare and most insurance companies don’t cover such care at home.

The programs have emerged only at a few hospital systems with their own insurance companies (like the Marshfield Clinic) or those that arrange for “bundled payments,” in which providers receive a set fee to manage an episode of care, as can occur with Medicare Advantage plans.

In Durocher’s case, the care was available — at no cost to him or other patients — only through the clinical trial, funded by a grant from the state Medicaid program. State health officials supported two simultaneous studies at UMass and Mass General Brigham hoping to reduce costs, improve quality of care, and, crucially, make it easier to transition patients out of the hospital.

The American Health Care Association, the trade group of for-profit nursing homes, calls “SNF at home” a misnomer because, by law, such services must be provided in an institution and meet detailed requirements. And the association points out that skilled nursing facilities provide services and socialization that can never be replicated at home, such as daily activity programs, religious services, and access to social workers.

But patients at home tend to get up and move around more than those in a facility, speeding their recovery, said Wendy Mitchell, medical director of the UMass Chan clinical trial. Also, therapy is tailored to their home environment, teaching patients to navigate the exact stairs and bathrooms they’ll eventually use on their own.

A quarter of people who go into nursing homes suffer an “adverse event,” such as infection or bed sore, said David Levine, clinical director for research for Mass General Brigham’s Healthcare at Home program and leader of its study. “We cause a lot of harm in facility-based care,” he said.

By contrast, in 2024, not one patient in the Rehabilitation Care at Home program of Nashville-based Contessa Health developed a bed sore and only 0.3% came down with an infection while at home, according to internal company data. Contessa delivers care in the home through partnerships with five health systems, including Mount Sinai Health System in New York City, the Allegheny Health Network in Pennsylvania, and Wisconsin’s Marshfield Clinic.

Contessa’s program, which has been providing in-home post-hospital rehabilitation since 2019, depends on help from unpaid family caregivers. “Almost universally, our patients have somebody living with them,” said Robert Moskowitz, Contessa’s acting president and chief medical officer.

The two Massachusetts-based studies, however, do enroll patients who live alone. In the UMass trial, an overnight home health aide can stay for a day or two if needed. And while alone, patients “have a single-button access to a live person from our command center,” said Apurv Soni, an assistant professor of medicine at UMass Chan and the leader of its study.

But SNF at home is not without hazards, and choosing the right patients to enroll is critical. The UMass research team learned an important lesson when a patient with mild dementia became alarmed by unfamiliar caregivers coming to her home. She was readmitted to the hospital, according to Mitchell.

The Mass General Brigham study relies heavily on technology intended to reduce the need for highly skilled staff. A nurse and physician each conducts an in-home visit, but the patient is otherwise monitored remotely. Medical assistants visit the home to gather data with a portable ultrasound, portable X-ray, and a device that can analyze blood tests on-site. A machine the size of a toaster oven dispenses medication, with a robotic arm that drops the pills into a dispensing unit.

The UMass trial, the one Durocher enrolled in, instead chose a “light touch” with technology, using only a few devices, Soni said.

The day Durocher went home, he said, a nurse met him there and showed him how to use a wireless blood pressure cuff, wireless pulse oximeter, and digital tablet that would transmit his vital signs twice a day. Over the next few days, he said, nurses came by to take blood samples and check on him. Physical and occupational therapists provided several hours of treatment every day, and a home health aide came a few hours a day. To his delight, the program even sent three meals a day.

Durocher learned to use the walker and how to get up the stairs to his bedroom with one crutch and support from his wife. After just one week, he transitioned to less-frequent, in-home physical therapy, covered by his insurance.

“The recovery is amazing because you’re in your own setting,” Durocher said. “To be relegated to a chair and a walker, and at first somebody helping you get up, or into bed, showering you — it’s very humbling. But it’s comfortable. It’s home, right?”

This article was produced by KFF Health News, 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. 

Rebecca Smith-Bindman, a professor at the University of California-San Francisco medical school, has spent well over a decade researching the disquieting risk that one of modern medicine’s most valuable tools, computerized tomography scans, can sometimes cause cancer.

Smith-Bindman and like-minded colleagues have long pushed for federal policies aimed at improving safety for patients undergoing CT scans. Under new Medicare regulations effective this year, hospitals and imaging centers must start collecting and sharing more information about the radiation their scanners emit.

About 93 million CT scans are performed every year in the United States, according to IMV, a medical market research company that tracks imaging. More than half of those scans are for people 60 and older. Yet there is scant regulation of radiation levels as the machines scan organs and structures inside bodies. Dosages are erratic, varying widely from one clinic to another, and are too often unnecessarily high, Smith-Bindman and other critics say.

“It’s unfathomable,” Smith-Bindman said. “We keep doing more and more CTs, and the doses keep going up.”

One CT scan can expose a patient to 10 or 15 times as much radiation as another, Smith-Bindman said. “There is very large variation,” she said, “and the doses vary by an order of magnitude — tenfold, not 10% different — for patients seen for the same clinical problem.” In outlier institutions, the variation is even higher, according to research she and a team of international collaborators have published.

She and other researchers estimated in 2009 that high doses could be responsible for 2% of cancers. Ongoing research shows it’s probably higher, since far more scans are performed today.

The cancer risk from CT scans for any individual patient is very low, although it rises for patients who have numerous scans throughout their lives. Radiologists don’t want to scare off patients who can benefit from imaging, which plays a crucial role in identifying life-threatening conditions like cancers and aneurysms and guides doctors through complicated procedures.

But the new data collection rules from the Centers for Medicare & Medicaid Services issued in the closing months of the Biden administration are aimed at making imaging safer. They also require a more careful assessment of the dosing, quality, and necessity of CT scans.

The requirements, rolled out in January, are being phased in over about three years for hospitals, outpatient settings, and physicians. Under the complicated reporting system, not every radiologist or health care setting is required to comply immediately. Providers could face financial penalties under Medicare if they don’t comply, though those will be phased in, too, starting in 2027.

When the Biden administration issued the new guidelines, a CMS spokesperson said in an email that excessive and unnecessary radiation exposure was a health risk that could be addressed through measurement and feedback to hospitals and physicians. The agency at the time declined to make an official available for an interview. The Trump administration did not respond to a request for comment for this article.

The Leapfrog Group, an organization that tracks hospital safety, welcomed the new rules. “Radiation exposure is a very serious patient safety issue, so we commend CMS for focusing on CT scans,” said Leah Binder, the group’s president and CEO. Leapfrog has set standards for pediatric exposure to imaging radiation, “and we find significant variation among hospitals,” Binder added.

CMS contracted with UCSF in 2019 to research solutions aimed at encouraging better measurement and assessment of CTs, leading to the development of the agency’s new approach.

The American College of Radiology and three other associations involved in medical imaging, however, objected to the draft CMS rules when they were under review, arguing in written comments in 2023 that they were excessively cumbersome, would burden providers, and could add to the cost of scans. The group was also concerned, at that time, that health providers would have to use a single, proprietary tech tool for gathering the dosing and any related scan data.

The single company in question, Alara Imaging, supplies free software that radiologists and radiology programs need to comply with the new regulations. The promise to keep it free is included in the company’s copyright. Smith-Bindman is a co-founder of Alara Imaging, and UCSF also has a stake in the company, which is developing other health tech products unrelated to the CMS imaging rule that it does plan to commercialize.

But the landscape has recently changed. ACR said in a statement from Judy Burleson, ACR vice president for quality management programs, that CMS is allowing in other vendors — and that ACR itself is “in discussion with Alara” on the data collection and submission. In addition, a company called Medisolv, which works on health care quality, said at least one client is working with another vendor, Imalogix, on the CT dose data.

Several dozen health quality and safety organizations — including some national leaders in patient safety, like the Institute of Healthcare Improvement — have supported CMS’ efforts.

Concerns about CT dosing are long-standing. A landmark study published in JAMA Internal Medicine in 2009 by a research team that included experts from the National Cancer Institute, the Department of Veterans Affairs, and universities estimated that CT scans were responsible for 29,000 excess cancer cases a year in the United States, about 2% of all cases diagnosed annually.

But the number of CT scans kept climbing. By 2016, it was estimated at 74 million, up 20% in a decade, though radiologists say dosages of radiation per scan have declined. Some researchers have noted that U.S. doctors order far more imaging than physicians in other developed countries, arguing some of it is wasteful and dangerous.

More recent studies, some looking at pediatric patients and some drawing on radiation exposure data from survivors of the atomic bomb attacks on Hiroshima and Nagasaki in Japan, have also identified CT scan risk.

Older people may face greater cancer risks because of imaging they had earlier in life. And scientists have emphasized the need to be particularly careful with children, who may be more vulnerable to radiation exposure while young and face the consequences of cumulative exposure as they age.

Max Wintermark, a neuroradiologist at the MD Anderson Cancer Center in Houston, who has been involved in the field’s work on appropriate utilization of imaging, said doctors generally follow dosing protocols for CT scans. In addition, the technology is improving; he expects artificial intelligence to soon help doctors determine optimal imaging use and dosing, delivering “the minimum amount of radiation dose to get us to the diagnosis that we’re trying to reach.”

But he said he welcomes the new CMS regulations.

“I think the measures will help accelerate the transition towards always lower and lower doses,” he said. “They are helpful.”

This article was produced by KFF Health News, 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. 

DENVER — Seven years ago, Erica Green learned through a Facebook post that her brother had been shot.

She rushed to check on him at a hospital run by Denver Health, the city’s safety-net system, but she was unable to get information from emergency room workers, who complained that she was creating a disturbance.

“I was distraught and outside, crying, and Jerry came out of the front doors,” she said.

Jerry Morgan is a familiar face from Green’s Denver neighborhood. He had rushed to the hospital after his pager alerted him to the shooting. As a violence prevention professional with the At-Risk Intervention and Mentoring program, or AIM, Morgan supports gun-violence patients and their families at the hospital — as he did the day Green’s brother was shot.

“It made the situation of that traumatic experience so much better. After that, I was, like, I want to do this work,” Green said.

Today, Green works with Morgan as the program manager for AIM, a hospital-linked violence intervention program launched in 2010 as a partnership between Denver Health and the nonprofit Denver Youth Program. It since has expanded to include Children’s Hospital Colorado and the University of Colorado Hospital.

AIM is one of dozens of hospital-linked violence intervention programs around the country. The programs aim to uncover the social and economic factors that contributed to someone ending up in the ER with a bullet wound: inadequate housing, job loss, or feeling unsafe in one’s neighborhood, for example.

Such programs that take a public health approach to stopping gun violence have had success — one in San Francisco reported a fourfold reduction in violent injury recidivism rates over six years. But President Donald Trump’s executive orders calling for the review of the Biden administration’s gun policies and trillions of dollars in federal grants and loans have created uncertainty around the programs’ long-term federal funding. Some organizers believe their programs will be just fine, but others are looking to shore up alternative funding sources.

“We’ve been worried about, if a domino does fall, how is it going to impact us? There’s a lot of unknowns,” said John Torres, associate director for Youth Alive, an Oakland-based nonprofit.

Federal data shows that gun violence became a leading cause of death among children and young adults at the start of this decade and was tied to more than 48,000 deaths among people of all ages in 2022. New York-based pediatric trauma surgeon Chethan Sathya, a National Institutes of Health-funded firearms injury prevention researcher, believes those statistics show that gun violence can’t be ignored as a health care issue. “It’s killing so many people,” Sathya said.

Research shows that a violent injury puts someone at heightened risk for future ones, and the risk of death goes up significantly by the third violent injury, according to a 2006 study published in The Journal of Trauma: Injury, Infection and Critical Care.

Benjamin Li, an emergency medicine physician at Denver Health and the health system’s AIM medical director, said the ER is an ideal setting to intervene in gun violence by working to reverse-engineer what led to a patient’s injuries.

“If you are just seeing the person, patching them up, and then sending them right back into the exact same circumstances, we know it’s going to lead to them being hurt again,” Li said. “It’s critical we address the social determinants of health and then try to change the equation.”

That might mean providing alternative solutions to gunshot victims who might otherwise seek retaliation, said Paris Davis, the intervention programs director for Youth Alive.

“If that’s helping them relocate out of the area, if that’s allowing them to gain housing, if that’s shifting that energy into education or job or, you know, family therapy, whatever the needs are for that particular case and individual, that is what we provide,” Davis said.

AIM outreach workers meet gunshot wound victims at their hospital bedsides to have what Morgan, AIM’s lead outreach worker, calls a tough, nonjudgmental conversation on how the patients ended up there.

AIM uses that information to help patients access the resources they need to navigate their biggest challenges after they’re discharged, Morgan said. Those challenges can include returning to school or work, or finding housing. AIM outreach workers might also attend court proceedings and assist with transportation to health care appointments.

“We try to help in whatever capacity we can, but it’s interdependent on whatever the client needs,” Morgan said.

Since 2010, AIM has grown from three full-time outreach workers to nine, and this year opened the REACH Clinic in Denver’s Five Points neighborhood. The community-based clinic provides wound-care kits; physical therapy; and behavioral, mental and occupational health care. In the coming months, it plans to add bullet removal to its services. It’s part of a growing movement of community-based clinics focused on violent injuries, including the Bullet Related Injury Clinic in St. Louis.

Ginny McCarthy, an assistant professor in the Department of Surgery at the University of Colorado, described REACH as an extension of the hospital-based work, providing holistic treatment in a single location and building trust between health care providers and communities of color that have historically experienced racial biases in medical care.

Caught in the Crossfire, created in 1994 and run by Youth Alive in Oakland, is cited as the nation’s first hospital-linked violence intervention program and has since inspired others. The Health Alliance for Violence Intervention, a national network initiated by Youth ALIVE to advance public health solutions to gun violence, counted 74 hospital-linked violence intervention programs among its membership as of January.

The alliance’s executive director, Fatimah Loren Dreier, compared medicine’s role in addressing gun violence to that of preventing an infectious disease, like cholera. “That disease spreads if you don’t have good sanitation in places where people aggregate,” she said.

Dreier, who also serves as executive director of the Kaiser Permanente Center for Gun Violence Research and Education, said medicine identifies and tracks patterns that lead to the spread of a disease or, in this case, the spread of violence.

“That is what health care can do really well to shift society. When we deploy this, we get better outcomes for everybody,” Dreier said.

The alliance, of which AIM is a member, offers technical assistance and training for hospital-linked violence intervention programs and successfully petitioned to make their services eligible for traditional insurance reimbursement.

In 2021, President Joe Biden issued an executive action that opened the door for states to use Medicaid for violence prevention. Several states, including California, New York, and Colorado, have passed legislation establishing a Medicaid benefit for hospital-linked violence intervention programs.

Last summer, then-U.S. Surgeon General Vivek Murthy declared gun violence a public health crisis, and the 2022 Bipartisan Safer Communities Act earmarked $1.4 billion in funding for a wide array of violence-prevention programs through next year.

But in early February, Trump issued an executive order instructing the U.S. attorney general to conduct a 30-day review of a number of Biden’s policies on gun violence. The White House Office of Gun Violence Prevention now appears to be defunct, and recent moves to freeze federal grants created uncertainty among the gun-violence prevention programs that receive federal funding.

AIM receives 30% of its funding from its operating agreement with Denver’s Office of Community Violence Solutions, according to Li. The rest is from grants, including Victims of Crime Act funding, through the Department of Justice. As of mid-February, Trump’s executive orders had not affected AIM’s current funding.

Some who work with the hospital-linked violence prevention programs in Colorado are hoping a new voter-approved firearms and ammunition excise tax in the state, expected to generate about $39 million annually and support victim services, could be a new source of funding. But the tax’s revenues aren’t expected to fully flow until 2026, and it’s not clear how that money will be allocated.

Trauma surgeon and public health researcher Catherine Velopulos, who is the AIM medical director at the University of Colorado hospital in Aurora, said any interruption in federal funding, even for a few months, would be “very difficult for us.” But Velopulos said she was reassured by the bipartisan support for the kind of work AIM does.

“People want to oversimplify the problem and just say, ‘If we get rid of guns, it’s all going to stop,’ or ‘It doesn’t matter what we do, because they’re going to get guns, anyway,’” she said. “What we really have to address is why people feel so scared that they have to arm themselves.”

The federal Consumer Financial Protection Bureau has taken major steps to help people with medical debt in its nearly 14-year history. It issued rules barring medical debt from Americans’ credit reports and went after debt collectors who pressured customers to pay bills they didn’t owe. But in early February, the Trump administration moved to effectively shutter the agency. 

“An Arm and a Leg” host Dan Weissmann talks with credit counselor Lara Ceccarelli about how the CFPB has helped clients at the nonprofit where she works, and how she’s navigating the sudden change.

Consumer rights advocate Chi Chi Wu, an attorney at the National Consumer Law Center, describes the court battle she and her colleagues are mounting to slow down the agency’s dismantling, and where things could go from here. 

“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

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This article was produced by KFF Health News, 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. 

A year ago, a new head of Social Security set out to stop the agency from financially devastating many of the people it was meant to help.

The agency had long made it a practice to reduce or halt benefit checks to recoup billions of dollars in payments it sent recipients but later said they never should have received.

Martin O’Malley, then the Social Security Administration commissioner, announced in March 2024 the agency would no longer cut off people’s monthly old-age, survivors, and disability checks to recoup money they had allegedly been overpaid — a pattern he called “clawback cruelty.” Instead, it would default to withholding 10% of monthly benefits. The new policy allowed people who already live on little to pay their rent and keep food on the table.

Last Friday, the Trump administration reversed that policy.

Beginning March 27, to recover new overpayments, the Social Security Administration will automatically withhold 100% of recipients’ monthly benefits, the agency announced.

The agency said it was acting in the interest of fiscal responsibility and that the reversal would save the government about $7 billion over a decade.

“It is our duty to revise the overpayment repayment policy back to full withholding, as it was during the Obama administration and first Trump administration, to properly safeguard taxpayer funds,” acting Commissioner Lee Dudek said in a news release.

Advocates for Social Security beneficiaries described the action as cruel and harmful.

“The results are predictable: more unnecessary suffering,” said Kathleen Romig, who worked at the Social Security Administration under O’Malley and is now director of Social Security and disability policy at the Center on Budget and Policy Priorities.

Kate Lang of the advocacy group Justice in Aging said she was heartbroken.

“Those who are most vulnerable, with the fewest resources, are the ones who will feel the harsh impacts of this change,” she said. Many “are going to be unable to buy food or keep the roof over their head,” she said.

In 2023, after an investigation by KFF Health News and Cox Media Group cast a spotlight on overpayments and clawbacks, lawmakers from both parties called on the Social Security Administration to change its approach.

The policy change a year ago was inspired in part by the plight of people such as Denise Woods, who was sleeping in her Chevy in Savannah, Georgia, in December 2023 while contending with lupus and congestive heart failure after the government cut off her disability benefits. The government was demanding she repay almost $58,000.

Many overpayments are the result of government error. It can take the government years to figure out it has been paying someone too much, and by then, the amount the government says it is owed can grow far beyond a beneficiary’s ability to repay. And it has often demanded that recipients repay the full amount within 30 days.

As of October, the SSA was withholding at least a portion of monthly benefit payments from hundreds of thousands of people, according to data the SSA provided last fall to KFF Health News and Cox Media Group. The agency said it was withholding up to 10% from 669,903 people to recoup an overpayment. Asked whether those numbers covered all types of benefits administered by the SSA, the agency’s press office didn’t say.

“Under Trump’s leadership, Social Security has reinstated a cruel policy of clawing back Social Security overpayments with no regard for an American’s ability to pay or whether the overpayment was an error by the agency,” said Sen. Ron Wyden of Oregon, the top Democrat on the Senate Finance Committee.

The new plan to completely withhold monthly benefits from recipients who were allegedly overpaid does not extend to the Supplemental Security Income program, one of two Social Security programs for people with disabilities. SSI, as the agency explains, covers “people with disabilities and older adults who have little or no income or resources.”

The government’s estimate that cutting people off completely will save $7 billion over a decade implies it expects many more overpayments in the years ahead.

The SSA’s March 7 announcement was part of a broader dismantling of Biden-era policies under President Donald Trump. It was also part of a broader upheaval at the Social Security Administration, which announced In February that it would cut its staff from about 57,000 to 50,000.

In an interview Monday, O’Malley predicted that the public will experience much longer wait times trying to get through to the agency by phone and longer waits for disability determinations.

Social Security runs on a very old computer system, he said, and driving people out of the agency who understand it “can only result in system collapse.”

“The risk of totally shutting down the agency is greatly increased by people mucking around that don’t know what they’re doing,” O’Malley said.

On the PBS NewsHour last week, he advised recipients to save money to prepare for an interruption of benefits.

Trump deputy Elon Musk has boasted of taking a chainsaw to the federal government and has called Social Security a Ponzi scheme. In a signed declaration filed in federal court last week, a recently retired SSA official, Tiffany Flick, said she “witnessed a disregard for critical processes” as members of DOGE — the Department of Government Efficiency, which Trump established by executive order — demanded access to sensitive Social Security systems, including files that contain beneficiaries’ banking information.

New management at the SSA called its workforce “bloated.” But, under the previous administration, the agency was telling a starkly different story.

A year ago, O’Malley told lawmakers that, as the number of people receiving benefits increased, “historic underfunding and understaffing” at the agency had created a “service delivery crisis.”

Late last year, the agency provided data to KFF Health News showing that in September its workforce was near a 50-year low. As of last month, applicants for disability benefits were waiting an average of more than seven months for a decision, according to the SSA website.

The staffing cuts will lead to more overpayments than ever and will make it harder for the people affected to clear up mistakes, said Jen Burdick, an attorney at Community Legal Services of Philadelphia.

As KFF Health News and Cox Media Group revealed in 2023, about 2 million people a year were receiving notices from the SSA that they were overpaid and owed money back.

People can appeal overpayment notices, request a lower withholding rate, or ask the SSA to waive collection altogether, the agency said. The SSA does not pursue recoveries while an initial appeal or waiver request is pending, it said.

Shortly before O’Malley left the SSA in November, the agency implemented changes that made it easier for beneficiaries to get overpayments waived. The agency spelled out grounds for determining the beneficiary was not at fault — for instance, if the agency continued to issue overpayments after the beneficiary reported a change in their financial circumstances that should have led to a reduction in benefits. Those policy changes remain intact.

Several Republicans who expressed concern about clawbacks in the aftermath of 2023 news coverage did not respond to inquiries for this article or declined to comment. One of them was Sen. Rick Scott (R-Fla.), who is now chair of the Senate’s Special Committee on Aging.

“Hardworking American taxpayers pay into Social Security all of their lives so that they can depend on it in the time they need it most,” Scott said in a 2023 letter to the agency. “The fact that the SSA’s actions are leaving some of them worse off, through no fault of their own, is absolutely unacceptable.”

Do you have an experience with Social Security overpayments you’d like to share? Click here to contact our reporting team.

This article was produced by KFF Health News, 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. 

When congressional Republicans in 2017 pushed to repeal the Affordable Care Act and slash Medicaid, dozens of physician groups, patient advocates, hospitals, and others rallied to defend the law and the safety-net program.

Eight years later, two industry groups have been notably restrained as GOP lawmakers consider sweeping new Medicaid cuts: the American Medical Association and the American Health Care Association, which represents nursing homes.

At the same time, the two groups are lobbying Republicans, seeking support on other priorities.

The AMA is lobbying lawmakers to reverse a nearly 3% cut in Medicare’s fees for physicians. And the AHCA has pushed Congress to roll back regulations enacted under President Joe Biden that mandate better staffing ratios at nursing homes.

Representatives of the two groups declined to comment on the record about any connections between the Medicaid fight and their other legislative priorities.

But AHCA spokesperson Rachel Reeves said the nursing home group, which has issued a statement defending Medicaid, is communicating with lawmakers about the importance of the program for people with low incomes and disabilities. “We will make sure that the voices of our community are heard and that the message is loud and clear: Congress must protect our seniors who rely on Medicaid,” she said. Medicaid is the primary payer for nursing home care, covering more than 6 in 10 nursing home residents.

Nevertheless, other advocates and congressional Democrats said they’re frustrated by the two groups. “The time to speak out is now,” Sen. Ron Wyden, the senior Democrat on the Senate Finance Committee, told KFF Health News. “Americans will know which organizations stood up against harmful cuts to Medicaid when this fight is over.”

Medicaid, a state-federal insurance plan that together with the related Children’s Health Insurance Program covers about 80 million Americans, is in the crosshairs as congressional Republicans seek to trim several trillion dollars in federal spending to offset the $4.5 trillion cost of extending tax cuts enacted in President Donald Trump’s first term.

Medicaid cuts on the scale being contemplated would put coverage for millions of Americans at risk. That has alarmed advocates who work with people covered by the program, including children, Americans with disabilities, and low-income older adults. Other advocacy organizations who work with these patients have been much more active.

Last week, more than 400 pediatricians traveled to Washington, D.C., to speak to members of Congress about the importance of Medicaid. More than 100 leaders of safety-net hospitals that serve low-income patients around the country did the same.

Patients’ advocates such as the American Cancer Society Cancer Action Network have defended Medicaid. Last month, state medical societies sent a letter to congressional leaders warning of dire consequences if Medicaid cuts are enacted. And this week, more than 750 members of the American College of Obstetricians and Gynecologists are expected in Washington, where the group says they’ll be lobbying to preserve Medicaid funding.

“Slicing hundreds of billions of dollars from federal funding will force states to cut the care children and families depend on or raise taxes on hard-working Americans,” said Chip Kahn, chief executive of the Federation of American Hospitals, another trade group fighting to defend Medicaid.

Building coalitions was critical in previous health care debates, said Ron Pollack, the former head of patient advocacy group Families USA. Pollack helped lead the push for the 2010 Affordable Care Act. “We succeeded in the past because we stuck together,” he said.

Eight years ago, the AMA and AHCA were key members of the coalition that turned back Republican efforts to repeal the Affordable Care Act, often called Obamacare.

The AMA, the nation’s largest physician group, sent multiple letters to Congress throughout 2017, warning lawmakers in a March 17, 2017, letter that they should “keep upmost in your mind the potentially life altering impact your decisions will have on millions of Americans.”

And the AHCA’s president was a leading voice opposing repeal, which at one point he called “the biggest threat that the sector has faced in at least 20 to 25 years.”

This year, the AMA hasn’t sent a single letter or issued any news releases opposing Medicaid cuts. By contrast, the group has issued seven news releases since January on the lack of congressional action on physician fees.

The AHCA issued its first public defense of Medicaid in this year’s debate — a document it called a fact sheet — only the day after House Republicans adopted a budget resolution that threatens the program’s funding. When the group issued its 2025 policy priorities last week, “Priority #1” focused on staffing, including repealing the Biden-era staffing mandate. “Protecting Medicaid” was “Priority #2.”

The Medicaid debate will likely drag on for months as GOP leaders in the House and Senate try to cobble together a bill to extend tax cuts.

Medicaid’s defenders say they’re still looking for more voices to speak up.

“Republicans have said outright that silence is consent,” Wyden said. “If health care organizations don’t speak out against the GOP’s plans to cut health care, Republican lawmakers are going to assume those organizations are on board with their agenda.”

This article was produced by KFF Health News, 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 Trump administration issued its first major set of proposed changes to the Affordable Care Act on Monday that federal officials said are intended to crack down on fraud in the program. Policy experts said they will make it harder for consumers to sign up for coverage, potentially reducing enrollment.

Details were released Monday after a draft press release was inadvertently posted earlier.

About 24 million Americans signed up for insurance plans sold under the ACA, known popularly as Obamacare, for 2025. The Biden administration achieved record enrollment levels after increasing premium subsidies for many lower-income people, which resulted in reducing the monthly cost of some plans to $0. It also made it easier for some very low-income people to sign up at any time of year, instead of waiting for an enrollment period each fall. But the program became plagued by fraudulent enrollment last year, generating about 274,000 consumer complaints through August, most focused on rogue insurance agents and other bad actors, to the Centers for Medicare & Medicaid Services.

The Trump administration said in a statement Monday that the new regulations include “critical and necessary steps to protect people from being enrolled in Marketplace coverage without their knowledge or consent, promote stable and affordable health insurance markets, and ensure taxpayer dollars fund financial assistance only for the people the ACA set out to support.”

Policy experts said the changes, though, will impose new paperwork burdens likely to hamper enrollment.

“Under this banner of trying to crack down on the bad actions of some insurance brokers, they are penalizing consumers, particularly low-income consumers, with more burdensome requirements and more limits on their access to coverage,” said Sabrina Corlette, a research professor and the co-director of the Center on Health Insurance Reforms at Georgetown University.

Among other new requirements, consumers would have to provide more information proving their eligibility for special enrollment periods and for premium subsidies when they enroll. The regulation would also shorten the annual enrollment period by a month. And it touches on social issues, limiting eligibility for “Dreamers” — a nickname for immigrants in the country illegally who were brought here as children, based on never-passed proposals in Congress called the DREAM Act.

The proposal would eliminate the year-round opportunity for a special enrollment period for people with very low incomes. But it would also set new requirements for the remaining special enrollment periods, which allow people to sign up after major life events, such as when their income changes, they lose their job-based coverage, or they get divorced, marry, or move. They would now have to provide evidence of their eligibility when applying under those special situations.

People auto-reenrolled into zero-premium plans during the regular enrollment period would be charged a small monthly payment until they confirm or update their information.

The ACA marketplaces, according to the proposal, would have to seek additional data from consumers, including the self-employed or gig workers, who estimate their income for the coming year but don’t have tax return data filed with the IRS for previous years.

The Biden administration made changes to reduce fraudulent enrollment last year including requiring three-way calls among insurance brokers, their clients, and the federal insurance marketplace, healthcare.gov, when certain sign-ups or coverage changes were made.

Some of the Trump administration’s proposed changes could help warn certain consumers that they’ve been unknowingly enrolled in an ACA plan, such as a requirement that some customers on even the least expensive plans receive a small, monthly premium bill.

However, the additional paperwork and other eligibility requirements “will probably have a downward effect on enrollment,” said Cynthia Cox, a vice president and the director of the Program on the ACA at KFF, a health information nonprofit that includes KFF Health News. “Some of that could be protecting enrollees who were fraudulently signed up or don’t realize they’re still signed up.”

Still, it could prove difficult for some people if they’re not able to document an expected change in income. “They might have a legitimate claim but have a hard time demonstrating it,” Cox said.

The annual open enrollment period would end Dec. 15, a month earlier than this year. The designated period is when most people sign up and is intended to prevent people from waiting until they get sick to enroll, a move that helps slow premium growth.

The Trump proposal also touches on social issues.

It would reverse the Biden administration policy that allows Dreamers to qualify for subsidized ACA coverage. That decision is already the subject of a court challenge brought by 19 states seeking to overturn it.

Also under the Trump proposal, gender-affirming care would not be considered part of the “essential health benefits” that all plans must cover.

According to an FAQ that accompanied the initial press release of the proposed regulations, the provision could “lead to increased out-of-pocket costs for individuals requiring sex-trait modification services, as they may need to seek plans that offer this coverage as a non-EHB or pay for services out-of-pocket.”

As a proposed rule, the measures now face a public comment period and potential revision before being finalized.

“None of it will go into effect right away,” said Katie Keith, director of the Center for Health Policy and the Law at Georgetown University. “The question is how much will apply in 2025 versus 2026.”

The FAQ acknowledged that some of the proposed changes, including ending year-round enrollment for very low-income people, “may increase the administrative burden for consumers associated with enrollment and verification processes or could deter some eligible low-income individuals from enrolling.”

But, it continued, “we believe that enhancing program integrity and reducing improper enrollments outweighs these potential impacts on access to coverage.”

Some lawmakers and conservative groups have pointed to the concerns about unauthorized enrollment and the role, if any, that ACA subsidies or enrollment periods have in fueling the problem.

The right-leaning Paragon Health Institute, for example, released a report in June that, among other things, called for the Biden administration’s expansion of the special enrollment period for low-income people to be reversed.

“There is substantial amounts of fraud and waste in the ACA exchanges and the Biden administration pursued the enrollment-at-all costs strategy, and was tolerant of the waste, fraud and abuse,” said Brian Blase, a former health aide during Trump’s first presidency who is president of the Paragon Health Institute and influential within the current Trump administration. “Clearly a different approach to protect legitimate enrollees and taxpayers is needed.”

This article was produced by KFF Health News, 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. 

La administración Trump publicó el lunes 10 de marzo su primer conjunto importante de cambios propuestos a la Ley de Cuidado de Salud a Bajo Precio (ACA). Funcionarios federales dicen que tienen como objetivo acabar con el fraude en el programa. Pero expertos aseguran que dificultará la inscripción, lo que terminará logrando que muchos consumidores no busquen cobertura.

Los detalles se dieron a conocer después que un borrador de la propuesta se hiciera público inadvertidamente.

Alrededor de 24 millones de estadounidenses se inscribieron en planes médicos para 2025 en los mercados de seguros de salud establecidos por ACA, conocida popularmente como Obamacare.

El gobierno de Biden logró niveles récord de inscripción después de aumentar los subsidios para pagar las primas para muchas personas de bajos ingresos, lo que resultó en reducir el costo mensual de algunos planes a literalmente $0.

También facilitó que algunas personas de ingresos muy bajos se inscribieran en cualquier momento del año, en lugar de esperar al período de inscripción cada otoño.

Pero el año pasado, el programa se vio afectado por inscripciones fraudulentas, lo que hizo que los Centros de Servicios de Medicare y& Medicaid (CMS) recibieran cerca de 274.000 quejas de consumidores, hasta agosto, la mayoría centradas en agentes de seguros deshonestos y otros actores de dudosa moralidad.

La administración Trump dijo en el comunicado del lunes que las nuevas regulaciones incluyen “pasos críticos y necesarios para proteger a las personas de ser inscritas en la cobertura del mercado sin su conocimiento o consentimiento, promover mercados de seguros de salud estables y asequibles, y garantizar que el dinero de los contribuyentes financie la asistencia financiera solo para las personas a las que ACA debe apoyar”.

Pero expertos en políticas dijeron que estos cambios impondrán nuevas cargas de papeleo que probablemente obstaculicen la inscripción.

“Bajo esta bandera de intentar acabar con las malas acciones de algunos corredores de seguros, están penalizando a los consumidores, particularmente a los de bajos ingresos, con requisitos más onerosos y más límites a su acceso a la cobertura”, dijo Sabrina Corlette, profesora de investigación y codirectora del Centro de Reformas de Seguros de Salud en la Universidad de Georgetown.

Entre otros nuevos requisitos, los consumidores tendrían que proporcionar al momento de inscribirse más información que demuestre su elegibilidad para períodos de inscripción especiales y para calificar para recibir subsidios.

La regulación también acortaría un mes el período de inscripción anual. Y toca temas sociales, limitando la elegibilidad de los “Dreamers” (el nombre dado a los inmigrantes que fueron traídos sin papeles al país cuando eran niños), en base en propuestas nunca aprobadas en el Congreso llamadas DREAM Act.

La propuesta eliminaría la oportunidad de poder inscribirse en cualquiera momento del año para personas con ingresos muy bajos. Pero también establecería nuevos requisitos para los períodos de inscripción especiales restantes, que permiten a las personas inscribirse después de experimentar eventos de vida importantes, como cuando sus ingresos cambian, pierden su cobertura basada en el trabajo o se divorcian, se casan o se mudan. Ahora tendrían que proporcionar más evidencia de su elegibilidad al presentar la solicitud en esas situaciones especiales.

A las personas que se reinscriban automáticamente en planes de primas cero durante el período de inscripción regular se les cobraría un pequeño pago mensual hasta que confirmen o actualicen su información.

Según la propuesta, los mercados de ACA tendrían que buscar datos adicionales de los consumidores, incluidos los trabajadores autónomos o por encargo, que estiman sus ingresos para el año siguiente pero no tienen datos de declaraciones de impuestos presentados ante el IRS para años anteriores.

El año pasado, la administración Biden implementó cambios para reducir las inscripciones fraudulentas, entre ellos, la exigencia de llamadas tripartitas entre los corredores de seguros, sus clientes y el mercado de seguros federal, cuidadodesalud.gov, cuando se realizaban ciertas inscripciones o cambios en la cobertura.

Algunos de los cambios propuestos por el gobierno de Trump podrían ayudar a advertir a ciertos consumidores de que han sido inscritos sin saberlo en un plan de ACA, como el requisito de que algunos clientes, incluso en los planes menos costosos, reciban una pequeña factura de sus primas mensuales.

Sin embargo, el papeleo adicional y otros requisitos de elegibilidad “probablemente tendrán un efecto en bajar la inscripción”, dijo Cynthia Cox, vicepresidenta y directora del Programa sobre ACA en KFF, una organización sin fines de lucro de información de salud que incluye a KFF Health News.

“Parte de eso podría proteger a los inscritos que se inscribieron de manera fraudulenta o que no se dan cuenta de que todavía están inscritos”, agregó Cox.

Aun así, podría resultar difícil para algunas personas si no pueden documentar un cambio esperado en los ingresos. “Pueden tener una reclamación legítima, pero que les resulta difícil demostrarlo”, dijo Cox.

El período anual de inscripción abierta finalizaría el 15 de diciembre, un mes antes que este año. Esa ventana anual es cuando la mayoría de las personas se inscriben y tiene como objetivo evitar que las personas esperen hasta enfermarse para inscribirse, una medida que ayuda a frenar el aumento de las primas.

La propuesta de Trump también impacta en cuestiones sociales.

Revertiría la política de la administración Biden que permite a los Dreamers calificar para la cobertura subsidiada de ACA. Esa decisión está siendo desafiada en los tribunales, en una demanda presentada por 19 estados que buscan revocarla.

También bajo la propuesta de Trump, la atención de afirmación de género no se consideraría parte de los “beneficios de salud esenciales” que todos los planes deben cubrir.

Según una sección de preguntas frecuentes que acompañó al comunicado de prensa inicial de las regulaciones propuestas, la disposición podría “llevar a mayores gastos de bolsillo para las personas que requieren servicios de modificación de rasgos sexuales, ya que podrían necesitar buscar planes que ofrezcan esta coberturas, como un plan sin beneficios esenciales o pagar los servicios de su bolsillo”.

Como regla propuesta, las medidas ahora enfrentan un período de comentarios públicos y una posible revisión antes de finalizarse.

“Nada de esto entrará en vigencia de inmediato”, dijo Katie Keith, directora del Centro de Política y Derecho de Salud en la Universidad de Georgetown. “La pregunta es cuánto se aplicará en 2025 en comparación con 2026”.

En las preguntas frecuentes se reconoció que algunos de los cambios propuestos, incluida la eliminación de la inscripción durante todo el año para las personas de ingresos muy bajos, “puede aumentar la carga administrativa para los consumidores asociada con los procesos de inscripción y verificación o podrían disuadir a algunas personas de bajos ingresos elegibles de inscribirse”.

Pero, continuó, “creemos que mejorar la integridad del programa y reducir las inscripciones indebidas supera estos posibles impactos en el acceso a la cobertura”.

Algunos legisladores y grupos conservadores han señalado las preocupaciones sobre la inscripción no autorizada y el papel que podrían tener los subsidios o los períodos de inscripción de ACA en que este problema se agudizara.

Por ejemplo, el Paragon Health Institute, de tendencia derechista, publicó un informe en junio que, entre otras cosas, pedía que se revirtiera la expansión del período de inscripción especial para personas de bajos ingresos que impulsó la administración Biden.

“Hay cantidades sustanciales de fraude y despilfarro en los mercados de ACA y la administración Biden siguió la estrategia de inscripción a cualquier costo y fue tolerante con el despilfarro, el fraude y el abuso”, dijo Brian Blase, ex asistente de salud durante la primera presidencia de Trump, quien es presidente del Paragon Health Institute y tiene influencia dentro de la actual administración Trump.

“Es evidente que se necesita un enfoque diferente para proteger a los inscritos legítimos y a los contribuyentes”, concluyó Blase.

Esta historia fue producida por KFF Health News, conocido antes como Kaiser Health News (KHN), una redacción nacional que produce periodismo en profundidad sobre temas de salud y es uno de los principales programas operativos de KFF, la fuente independiente de investigación de políticas de salud, encuestas y periodismo. 

BOLIGEE, Ala. — Green lights flickered on the wireless router in Barbara Williams’ kitchen. Just one bar lit up — a weak signal connecting her to the world beyond her home in the Alabama Black Belt.

Next to the router sat medications, vitamin D pills, and Williams’ blood glucose monitor kit.

“I haven’t used that thing in a month or so,” said Williams, 72, waving toward the kit. Diagnosed with diabetes more than six years ago, she has developed nerve pain from neuropathy in both legs.

Williams is one of nearly 3 million Americans who live in mostly rural counties that lack both health care and reliable high-speed internet, according to an analysis by KFF Health News, which showed that these people tend to live sicker and die younger than others in America.

Compared with those in other regions, patients across the rural South, Appalachia, and remote West are most often unable to make a video call to their doctor or log into their patient portals. Both are essential ways to participate in the U.S. medical system. And Williams is among those who can do neither.

This year, more than $42 billion allocated in the 2021 Infrastructure Investment and Jobs Act is expected to begin flowing to states as part of a national “Internet for All” initiative launched by the Biden administration. But the program faces uncertainty after Commerce Department Secretary Howard Lutnick last week announced a “rigorous review” asserting that the previous administration’s approach was full of “woke mandates.”

High rates of chronic illness and historical inequities are hallmarks of many of the more than 200 U.S. counties with poor services that KFF Health News identified. Dozens of doctors, academics, and advocates interviewed for this article unanimously agreed that limited internet service hinders medical care and access.

Without fast, reliable broadband, “all we’re going to do is widen health care disparities within telemedicine,” said Rashmi Mullur, an endocrinologist and chief of telehealth at VA Greater Los Angeles. Patients with diabetes who also use telemedicine are more likely to get care and control their blood sugar, Mullur found.

Diabetes requires constant management. Left untreated, uncontrolled blood sugar can cause blindness, kidney failure, nerve damage, and eventually death.

Williams, who sees a nurse practitioner at the county hospital in the next town, said she is not interested in using remote patient monitoring or video calls.

“I know how my sugar affects me,” Williams said. “I get a headache if it’s too high.” She gets weaker when it’s down, she said, and always carries snacks like crackers or peppermints.

Williams said she could even drink a soda pop — orange, grape — when her sugar is low but would not drink one when she felt it was high because she would get “kind of goozie-woozy.”

‘This Is America’

Connectivity dead zones persist in American life despite at least $115 billion lawmakers have thrown toward fixing the inequities. Federal broadband efforts are fragmented and overlapping, with more than 133 funding programs administered by 15 agencies, according to a 2023 federal report.

“This is America. It’s not supposed to be this way,” said Karthik Ganesh, chief executive of Tampa, Florida-based OnMed, a telehealth company that in September installed a walk-in booth at the Boligee Community Center about 10 minutes from Williams’ home. Residents can call up free life-size video consultations with an OnMed health care provider and use equipment to check their weight and blood pressure.

OnMed, which partnered with local universities and the Alabama Cooperative Extension System, relies on SpaceX’s Starlink to provide a high-speed connection in lieu of other options.

A short drive from the community center, beyond Boligee’s Main Street with its deserted buildings and an empty railroad depot and down a long gravel drive, is the 22-acre property where Williams lives.

Last fall, Williams washed a dish in her kitchen, with its unforgiving linoleum-topped concrete floors. A few months earlier, she said, a man at the community center signed her up for “diabetic shoes” to help with her sore feet. They never arrived.

As Williams spoke, steam rose from a pot of boiling potatoes on the stove. Another pan sizzled with hamburger steak. And on a back burner simmered a mix of Velveeta cheese, diced tomatoes, and peppers.

She spent years on her feet as head cook at a diner in Cleveland, Ohio. The oldest of nine, Williams returned to her family home in Greene County more than 20 years ago to care for her mother and a sister, who both died from cancer in the back bedroom where she now sleeps.

Williams looked out a window and recalled when the landscape was covered in cotton that she once helped pick. Now three houses stand in a carefully tended clearing surrounded by tall trees. One belongs to a brother and the other to a sister who drives with her daily to the community center for exercise, prayers, and friendship with other seniors.

All the surviving siblings, Williams said, have diabetes. “I don’t know how we became diabetic,” she said. Neither of their parents had been diagnosed with the illness.

In Greene County, an estimated quarter of adults have diabetes — twice the national average. The county, which has about 7,600 residents, also has among the nation’s highest rates for several chronic diseases such as high blood pressure, stroke, and obesity, Centers for Disease Control and Prevention data shows.

The county’s population is predominately Black. The federal CDC reports that Black Americans are more likely to be diagnosed with diabetes and are 40% more likely than their white counterparts to die from the condition. And in the South, rural Black residents are more likely to lack home internet access, according to the Joint Center for Political and Economic Studies, a Washington-based think tank.

To identify counties most lacking in reliable broadband and health care providers, KFF Health News used data from the Federal Communications Commission and George Washington University’s Mullan Institute for Health Workforce Equity. Reporters also analyzed U.S. Census Bureau, CDC, and other data to understand the health status and demographics of those counties.

The analysis confirms that internet and care gaps are “hitting areas of extreme poverty and high social vulnerability,” said Clese Erikson, deputy director of the health workforce research center at the Mullan Institute.

Digital Haves vs. Have-Nots

Just over half of homes in Greene County have access to reliable high-speed internet — among the lowest rates in the nation. Greene County also has some of the country’s poorest residents, with a median household income of about $31,500. Average life expectancy is less than 72 years, below the national average.

By contrast, the KFF Health News analysis found that counties with the highest rates of internet access and health care providers correlated with higher life expectancy, less chronic disease, and key lifestyle factors such as higher incomes and education levels.

One of those is Howard County, Maryland, between Baltimore and Washington, D.C., where nearly all homes can connect to fast, reliable internet. The median household income is about $147,000 and average life expectancy is more than 82 years — a decade longer than in Greene County. A much smaller share of residents live with chronic conditions such as diabetes.

One is 78-year-old Sam Wilderson, a retired electrical engineer who has managed his Type 2 diabetes for more than a decade. He has fiber-optic internet at his home, which is a few miles from a cafe he dines at every week after Bible study. On a recent day, the cafe had a guest Wi-Fi download speed of 104 megabits per second and a 148 Mbps upload speed. The speeds are fast enough for remote workers to reliably take video calls.

Americans are demanding more speed than ever before. Most households have multiple devices — televisions, computers, gaming systems, doorbells — in addition to phones that can take up bandwidth. The more devices connected, the higher minimum speeds are needed to keep everything running smoothly.

To meet increasing needs, federal regulators updated the definition of broadband last year, establishing standard speeds of 100/20 Mbps. Those speeds are typically enough for several users to stream, browse, download, and play games at the same time.

Christopher Ali, professor of telecommunications at Penn State, recommends minimum standard speeds of 100/100 Mbps. While download speeds enable consumption, such as streaming or shopping, fast upload speeds are necessary to participate in video calls, say, for work or telehealth.

At the cafe in Howard County, on a chilly morning last fall, Wilderson ordered a glass of white wine and his usual: three-seeded bread with spinach, goat cheese, smoked salmon, and over-easy eggs. After eating, Wilderson held up his wrist: “This watch allows me to track my diabetes without pricking my finger.”

Wilderson said he works with his doctors, feels young, and expects to live well into his 90s, just as his father and grandfather did.

Telehealth is crucial for people in areas with few or no medical providers, said Ry Marcattilio, an associate director of research at the Institute for Local Self-Reliance. The national research and advocacy group works with communities on broadband access and reviewed KFF Health News’ findings.

High-speed internet makes it easier to use video visits for medical checkups, which most patients with diabetes need every three months.

Being connected “can make a huge difference in diabetes outcomes,” said Nestoras Mathioudakis, an endocrinologist and co-medical director of Johns Hopkins Medicine Diabetes & Education Program, who treats patients in Howard County.

Paying More for Less

At Williams’ home in Alabama, pictures of her siblings and their kids cover the walls of the hallway and living room. A large, wood-framed image of Jesus at the Last Supper with his disciples hangs over her kitchen table.

Williams sat down as her pots simmered and sizzled. She wasn’t feeling quite right. “I had a glass of orange juice and a bag of potato chips, and I knew that wasn’t enough for breakfast, but I was cooking,” Williams said.

Every night Williams takes a pill to control her diabetes. In the morning, if she feels as if her sugar is dropping, she knows she needs to eat. So, that morning, she left the room to grab a peppermint, walking by the flickering wireless router.

The router’s download and upload speeds were 0.03/0.05 Mbps, nearly unusable by modern standards. Williams’ connection on her house phone can sound scratchy, and when she connects her cellphone to the router, it does not always work. Most days it’s just good enough for her to read a daily devotional website and check Facebook, though the stories don’t always load.

Rural residents like Williams paid nearly $13 more a month on average in late 2020 for slow internet connections than those in urban areas, according to Brian Whitacre, an agricultural economics professor at Oklahoma State University.

“You’re more likely to have competition in an urban area,” Whitacre said.

In rural Alabama, cellphone and internet options are limited. Williams pays $51.28 a month to her wireless provider, Ring Planet, which did not respond to calls and emails.

In Howard County, Maryland, national fiber-optic broadband provider Verizon Communications faces competition from Comcast, a hybrid fiber-optic and cable provider. Verizon advertises a home internet plan promising speeds of 300/300 Mbps starting at $35 a month for its existing mobile customers. The company also offers a discounted price as low as $20 a month for customers who participate in certain federal assistance programs.

“Internet service providers look at the economics of going into some of these communities and there just isn’t enough purchasing power in their minds to warrant the investment,” said Ross DeVol, chief executive of Heartland Forward, a nonpartisan think tank based in Bentonville, Arkansas, that specializes in state and local economic development.

Conexon, a fiber-optic cable construction company, estimates it costs $25,000 per mile to build above-ground fiber lines on poles and $60,000 to $70,000 per mile to build underground.

Former President Joe Biden’s 2021 infrastructure law earmarked $65 billion with a goal of connecting all Americans to high-speed internet. Money was designated to establish digital equity programs and to help low-income customers pay their internet bills. The law also set aside tens of billions through the Broadband Equity Access and Deployment Program, known as BEAD, to connect homes and businesses.

That effort prioritizes fiber-optic connections, but federal regulators recently outlined guidance for alternative technologies, including low Earth orbit satellites like SpaceX’s Starlink service.

Funding the use of satellites in federal broadband programs has been controversial inside federal agencies. It has also been a sore point for Elon Musk, who is chief executive of SpaceX, which runs Starlink, and is a lead adviser to President Donald Trump.

After preliminary approval, a federal commission ruled that Starlink’s satellite system was “not reasonably capable” of offering reliable high speeds. Musk tweeted last year that the commission had “illegally revoked” money awarded under the agency’s Trump-era Rural Digital Opportunity Fund.

In February, Trump nominated Arielle Roth to lead the federal agency overseeing the infrastructure act’s BEAD program. Roth is telecommunications policy director for the Senate Committee on Commerce, Science, and Transportation. Last year, she criticized the program’s emphasis on fiber and said it was beleaguered by a “woke social agenda” with too many regulations.

Commerce Secretary Lutnick last week said he will get rid of “burdensome regulations” and revamp the program to “take a tech-neutral approach.” Republicans echoed his positions during a U.S. House subcommittee hearing the same day.

When asked about potentially weakening the program’s required low-cost internet option, former National Telecommunications and Information Administration official Sarah Morris said such a change would build internet connections that people can’t afford. Essentially, she said, they would be “building bridges to nowhere, building networks to no one.”

‘That Hurt’

Over a lunch of tortilla chips with the savory sauce that had been simmering on the stove, Williams said she hadn’t been getting regular checkups before her diabetes diagnosis.

“To tell you the truth, if I can get up and move and nothing is bothering me, I don’t go to the doctor,” Williams said. “I’m just being honest.”

Years ago, Williams recalled, “my head was hurting me so bad I had to just lay down. I couldn’t stand up, walk, or nothing. I’d get so dizzy.”

Williams thought it was her blood pressure, but the doctor checked for diabetes. “How did they know? I don’t know,” Williams said.

As lunch ended, she pulled out her glucose monitor. Williams connected the needle and wiped her finger with an alcohol pad. Then she pricked her finger.

“Oh,” Williams said, sucking air through her teeth. “That hurt.”

She placed the sample in the machine, and it quickly displayed a reading of 145 — a number, Williams said, that meant she needed to stop eating.

This article was produced by KFF Health News, 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.