The 55-year-old struggles with depression, addiction, and suicidal thoughts. He worried a judge would terminate him from a special diversion program meant to keep people with mental illness from being incarcerated. He was failing to keep up with the program’s onerous work and community service requirements.

“I’m kind of scared. I feel kind of defeated,” Brown said.

Last year, Brown threatened to take his life with a gun and his family called 911 seeking help, he said. The police arrived, and Brown was arrested and charged with a felony of firearm possession.

After months in jail, Brown was offered access to the Health Empowerment Linkage and Possibilities, or HELP, Court. If he pleaded guilty, he’d be connected to services and avoid prison time. But if he didn’t complete the program, he’d possibly face incarceration.

“It’s almost like coercion,” Brown said. “‘Here, sign these papers and get out of jail.’ I feel like I could have been dealt with a lot better.”

Advocates, attorneys, clinicians, and researchers said courts such as the one Brown is navigating can struggle to live up to their promise. The diversion programs, they said, are often expensive and resource-intensive, and serve fewer than 1% of the more than 2 million people who have a serious mental illness and are booked into U.S. jails each year.

People can feel pressured to take plea deals and enter the courts, seeing the programs as the only route to get care or avoid prison time. The courts are selective, due in part to political pressures on elected judges and prosecutors. Participants must often meet strict requirements that critics say aren’t treatment-focused, such as regular hearings and drug screenings.

And there is a lack of conclusive evidence on whether the courts help participants long-term. Some legal experts, like Lea Johnston, a professor of law at the University of Florida, worry the programs distract from more meaningful investments in mental health resources.

Jails and prisons are not the place for individuals with mental disorders, she said. “But I’m also not sure that mental health court is the solution.”

The country’s first mental health court was established in Broward County, Florida, in 1997, “as a way to promote recovery and mental health wellness and avoid criminalizing mental health problems.” The model was replicated with millions in funding from such federal agencies as the Substance Abuse and Mental Health Services Administration and the Department of Justice.

More than 650 adult and juvenile mental health courts were operational as of 2022, according to the National Treatment Court Resource Center. There’s no set way to run them. Generally, participants receive treatment plans and get linked to services. Judges and mental health clinicians oversee their progress.

Researchers from the center found little evidence that the courts improve participants’ mental health or keep them out of the criminal justice system. “Few studies … assess longer-term impacts” of the programs “beyond one year after program exit,” said a 2022 policy brief on mental health courts.

The courts work best when paired with investments in services such as clinical treatment, recovery programs, and housing and employment opportunities, said Kristen DeVall, the center’s co-director.

“If all of these other supports aren’t invested in, then it’s kind of a wash,” she said.

The courts should be seen as “one intervention in that larger system,” DeVall said, not “the only resource to serve folks with mental health needs” who get caught up in the criminal justice system.

Resource limitations can also increase the pressures to apply for mental health court programs, said Lisa M. Wayne, executive director of the National Association of Criminal Defense Lawyers. People seeking help might not feel they have alternatives.

“It’s not going to be people who can afford mental health intervention. It’s poor people, marginalized folks,” she said.

Other court skeptics wonder about the larger costs of the programs.

In a study of a mental health court in Pennsylvania, Johnston and a University of Florida colleague found participants were sentenced to longer time under government supervision than if they’d gone through the regular criminal justice system.

“The bigger problem is they’re taking attention away from more important solutions that we should be investing in, like community mental health care,” Johnston said.

When Melissa Vergara’s oldest son, Mychael Difrancisco, was arrested on felony gun charges in Queens in May 2021, she thought he would be an ideal candidate for the New York City borough’s mental health court because of his diagnosis of autism spectrum disorder and other behavioral health conditions.

She estimated she spent tens of thousands of dollars to prepare Difrancisco’s case for consideration. Meanwhile, her son sat in jail on Rikers Island, where she said he was assaulted multiple times and had to get half a finger amputated after it was caught in a cell door.

In the end, his case was denied diversion into mental health court. Difrancisco, 22, is serving a prison sentence that could be as long as four years and six months.

“There’s no real urgency to help people with mental health struggles,” Vergara said.

Critics worry such high bars to entry can lead the programs to exclude people who could benefit the most. Some courts don’t allow those accused of violent or sexual crimes to participate. Prosecutors and judges can face pressure from constituents that may lead them to block individuals accused of high-profile offenses.

And judges often aren’t trained to make decisions about participants’ care, said Raji Edayathumangalam, senior policy social worker with New York County Defender Services.

“It’s inappropriate,” she said. “We’re all licensed to practice in our different professions for a reason. I can’t show up to do a hernia operation just because I read about it or sat next to a hernia surgeon.”

Mental health courts can be overly focused on requirements such as drug testing, medication compliance, and completing workbook assignments, rather than progress toward recovery and clinical improvement, Edayathumangalam said.

Completing the programs can leave some participants with clean criminal records. But failing to meet a program’s requirements can trigger penalties — including incarceration.

During a recent hearing in the Clayton County Behavioral Health Accountability Court in suburban Atlanta, one woman left the courtroom in tears when Judge Shana Rooks Malone ordered her to report to jail for a seven-day stay for “being dishonest” about whether she was taking court-required medication.

It was her sixth infraction in the program — previous consequences included written assignments and “bench duty,” in which participants must sit and think about their participation in the program.

“I don’t like to incarcerate,” Malone said. “That particular participant has had some challenges. I’m rooting for her. But all the smaller penalties haven’t worked.”

Still, other participants praised Malone and her program. And, in general, some say such diversion programs provide a much-needed lifeline.

Michael Hobby, 32, of Gainesville was addicted to heroin and fentanyl when he was arrested for drug possession in August 2021. After entry into the HELP Court program, he got sober, started taking medication for anxiety and depression, and built a stable life.

“I didn’t know where to reach out for help,” he said. “I got put in handcuffs, and it saved my life.”

Even as Donald Brown awaited his fate, he said he had started taking medication to manage his depression and has stayed sober because of HELP Court.

“I’ve learned a new way of life. Instead of getting high, I’m learning to feel things now,” he said.

Brown avoided jail that early December day. A hearing to decide his fate could happen in the next few weeks. But even if he’s allowed to remain in the program, Brown said, he’s worried it’s only a matter of time before he falls out of compliance.

“To try to improve myself and get locked up for it is just a kick in the gut,” he said. “I tried really hard.”

KFF Health News senior correspondent Fred Clasen-Kelly contributed to this report.

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But during a recent visit, the medical assistant who greeted her had not heard of the medicines known as preexposure prophylaxis, or PrEP, and she seemed uncomfortable discussing it, Perkins said. Her provider had heard of it but didn’t feel confident prescribing it.

“She was at least honest enough to say that she was interested in it, but she didn’t really know that much about it,” said Perkins, a 25-year-old nurse, who decided to get on PrEP after participating in a sexual health education class and thinking more about her own risk. She’s still trying to find a provider to write her a prescription.

“If I wasn’t really confident in myself, this could have been a very discouraging experience,” Perkins said.

PrEP is a crucial tool in the fight against the ongoing HIV epidemic and, when taken as prescribed, is highly effective at preventing infection from sexual contact or injection drug use.

But more than a decade after the first PrEP drug was approved for the U.S. market, one of the groups that would benefit most from the medications isn’t taking them: Black women, such as Perkins, whose gender identity align with their sex assigned at birth.

Doctors, public health researchers, and those who provide HIV treatment and prevention services say long-standing, systemic factors, such as stigma and racism, are major barriers to PrEP uptake among cisgender Black women. Transgender Black women face obstacles to PrEP uptake as well, especially discrimination related to their gender identity.

But many researchers focus on cisgender Black women, who, they say, are often overlooked by the health care system and face obstacles like: noninclusive marketing leading to a lack of awareness about who would benefit, fewer treatment options for women than for men, and medical professionals wary to prescribe it. These challenges are even more apparent across the South, which has the highest rates of new HIV diagnoses in the country.

Women had about a fifth of new HIV infections in 2021, according to recent data from the Centers for Disease Control and Prevention. And cisgender Black women made up an outsize share.

“If we don’t figure out how we can change the system, we’re just going to continue to keep failing Black women,” said Tiara Willie, an assistant professor of mental health at the Johns Hopkins Bloomberg School of Public Health.

The FDA has approved three drugs for use as PrEP: the pills Descovy and Truvada, which also has a generic version, and the injectable Apretude. Descovy is newer and comes in a smaller tablet than Truvada, which can make it more desirable. It was approved for men and transgender women who have sex with men, but wasn’t tested on people assigned female at birth.

That decision frustrated HIV researchers and advocates, including Rochelle Walensky, who worked at the Harvard University Center for AIDS Research before later leading the CDC.

In a 2019 editorial, Walensky and her colleague Robert H. Goldstein criticized this “two-tier system,” in which men can get the medication knowing it’s safe for them and with insurance approval, but women can’t.

Gilead Sciences, the company that makes Descovy, later announced it would conduct a trial focused on the drug’s use among cisgender women. The company said that study is ongoing, with data expected in late 2024. The CDC, for its part, earlier this year announced an $8 million grant to fund studies on strategies to increase PrEP uptake among Black cisgender women.

Black women face the same obstacles as other populations when it comes to PrEP, researchers said, but many do so with fewer resources. Recent data from the U.S. Census Bureau shows Black Americans disproportionately live in poverty and women are more likely than men to live in poverty.

Taking PrEP requires regular testing and doctor visits to check for HIV infection, which can present a “tremendous barrier” to access because of cost and logistics, said Michael Fordham, a program manager at the University of Alabama at Birmingham’s 1917 Clinic, the largest HIV care facility in the state.

“We’re actually seeing PrEP patients more frequently than we see our patients living with HIV that are stable,” he said.

The CDC updated its PrEP guidelines in 2021 to reflect the latest science and drug approvals, but the agency has heard complaints from providers that they’re still too onerous, said Robyn Neblett Fanfair, acting director of the agency’s Division of HIV Prevention. She added the CDC is “moving toward” guidelines that are more “timely and nimble.”

Fanfair said her division is also focused on reducing the costs associated with taking PrEP, which can be significant. Just starting on PrEP can cost more than $2,000.

For now, the federal government mandates that private insurance plans cover PrEP, even as that rule faces a legal challenge. Still, in a recent study, CDC scientists found some 50,000 people had uncovered PrEP costs in 2018.

“Policies that increase access to health insurance, such as Medicaid expansion, can improve access to PrEP,” the study said. “This may be especially impactful for the southern US,” where many states have yet to expand the state-federal insurance program for low-income people under the Affordable Care Act.

But paying for PrEP isn’t the only barrier to access, especially in the South.

HIV and other sexually transmitted infections can still be uncomfortable for physicians and nurse practitioners to talk about in the “Bible Belt,” despite their prevalence, said Anitra Walker, the vice president of operations at Mercy Care, an Atlanta-area health clinic that gets federal funding.

Social stigma not only can prevent Black women from talking about PrEP with their friends, neighbors, and doctors, but it can seep into their domestic relationships, said Mauda Monger, an assistant professor at the School of Population Health at the University of Mississippi Medical Center.

“If their partner is the person providing their housing, their food, and resources for their children, saying ‘I’m on PrEP’ openly may actually put her livelihood in jeopardy,” said Monger, noting further that broaching the subject can put women at risk of physical harm.

Increasing PrEP uptake requires expanding access to good jobs, affordable health care, and stable housing, Monger said, to allow Black women to feel more empowered to take control of their health.

Researchers also said messaging about PrEP and how it’s marketed needs to change.

Willie, from Johns Hopkins, conducted focus groups in 2019 in Jackson, Mississippi, with Black cisgender women, who said they felt their experiences weren’t reflected in advertising campaigns for PrEP.

If “it wasn’t just gay men or transgender people who are in the ads,” one participant said, “then it would make everybody feel like … it’s not just for specific people.”

Researchers have to “work upstream” to undo those perceptions once they take hold, said Jessica Sales, an associate professor at Emory University’s Rollins School of Public Health.

Sales is partnering with Atlanta sexual health nonprofit SisterLove to train a small fleet of “influencers” to host informal conversations with community members and study their effectiveness in increasing PrEP knowledge, interest, and uptake among cisgender women. Perkins, the nurse who was unable to get a PrEP prescription from her OB-GYN, is part of the cohort.

SisterLove’s Healthy Love curriculum, backed by the CDC, gives Black women and their social groups the “freedom to hold conversations differently” than they would with medical providers, said the group’s founder, Dázon Dixon Diallo.

Failing to ensure cisgender Black women have access to — and are actually interested in taking — PrEP will undermine the fight to bring the HIV epidemic under control, Diallo warned.

There’s “damage that has to be undone,” she said. “If we’re not centering Black women in this epidemic, we are getting nowhere to the end.”

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Now, that Trump program is one of several health initiatives targeted for substantial cuts by members of his own party as they eye next year’s elections.

Pushing a slate of conservative political priorities that also takes aim at sex education for teens, health worker vaccine mandates, and more, Republicans in the House of Representatives have proposed a spending bill that would cut $1.6 billion from the Centers for Disease Control and Prevention — one-sixth of the agency’s budget.

The proposal would zero out the agency’s share of the Trump HIV plan, which was more than a third of the program’s budget in the current fiscal year. It would also eliminate funding through other channels, such as the Health Resources and Services Administration’s Ryan White HIV/AIDS Program.

With another budget fight and potential government shutdown looming Oct. 1, the specific proposal is unlikely to clear Congress. Still, former CDC officials said they fear it is the opening bid on what could nonetheless be debilitating reductions to a strained agency that has lost some public support in recent years.

The cuts come on the heels of other recent reductions at the CDC, triggered by the eleventh-hour debt-ceiling deal, to its budgets for childhood vaccination programs and prevention of sexually transmitted infections. And they provide an early opportunity for the CDC’s new director, Mandy Cohen, to show how well she can convince members of Congress to protect the agency’s interests in a polarized political landscape.

“Public health is being politicized to a point that’s never been seen,” said Kyle McGowan, of consulting firm Ascendant Strategic Partners, who served as chief of staff at the CDC during the Trump administration. Cutting public health spending “is not smart,” he said. “These culture wars are now leaking into and harming public health.”

He called the proposed cuts unprecedented in their targeting of bipartisan public health initiatives.

The House Republican spending proposal, which came from members of the Labor, Health and Human Services, Education subcommittee, also targets programs that have drawn the ire of conservative lawmakers, such as those that focus on climate change and gun violence research.

“Cuts to the Centers for Disease Control and Prevention are as outrageous as they are dangerous,” said Connecticut Rep. Rosa DeLauro, the highest-ranking Democrat on the subcommittee.

But Rep. Kay Granger, the Texas Republican who chairs the House Appropriations Committee, said the bill “works to responsibly fund programs that help improve the health and lives of the American people. It also holds agencies accountable when there has been a history of poor performance or controversial activities.”

Granger and the chair of the subcommittee that drafted the bill, Rep. Robert Aderholt (R-Ala.), did not respond to requests for further information.

The House Appropriations Committee has yet to mark up and vote on the measure, which would also need the approval of the full Republican-controlled House and Democratic-controlled Senate. The Senate Appropriations Committee has approved its own health spending bill, which largely maintains existing CDC funding for HIV and would require the two chambers to work together to produce a consensus measure.

And any spending measure would also need the signature of President Joe Biden, whose most recent budget proposal included a request for $850 million to reduce new HIV cases.

The CDC declined to comment on the possible cuts, saying it would be premature to do so amid the ongoing budget process.

The Trump administration’s HIV program launched in 2019 with the goal of cutting new infections nationwide by 90% by 2030. It has sent more than $1.7 billion, through different federal health agencies, to HIV hot spots around the country.

But the program has run into significant headwinds. The covid-19 pandemic diverted the attention of public health officials. Plus, red tape, along with persistent stigma and discrimination fueled by anti-LGBTQ+ messaging from politicians, have many health officials worried it won’t meet its ambitious goals.

House Republicans said the HIV program, well shy of its first main milestone, in 2025, hasn’t met its goals.

“This program has demonstrated a lack of performance data based on outcomes, insufficient budget justifications, and vague spend plans. The initiative has not met its original objectives,” the Republican-led subcommittee wrote in a report that KFF Health News obtained but could not independently verify as official. Granger and Aderholt did not respond to requests to verify the document.

Trump’s Ending the HIV Epidemic initiative isn’t the only Republican-created HIV program being targeted.

A number of key provisions in the President’s Emergency Plan for AIDS Relief, known as PEPFAR, are set to expire on Sept. 30. The program, which funds HIV and AIDS prevention around the world, has saved millions of lives, and is widely seen as a public health and foreign policy success. It was launched in 2003 under then-president George W. Bush.

But discussions about reauthorizing the program have been derailed by Republican claims it finances abortion. PEPFAR won’t immediately stop its work, but missing the deadline could signal an uncertain future for the program, experts say.

Regarding the Trump HIV initiative, service providers say any budget reductions would slow the progress it has made in the fight against the disease.

“There’s a lot at stake here,” said Justin Smith, of Positive Impact Health Centers, an Atlanta-area HIV clinic. Smith has helped Georgia public health officials plan the distribution of Ending the HIV Epidemic funds among the four priority counties in the state.

Smith said the proposed cuts would be “quite devastating” for the work being done in Cobb, DeKalb, Fulton, and Gwinnett counties in metropolitan Atlanta. That work has included ramping up HIV testing and PrEP, or preexposure prophylaxis, programs, as well as expanding care for transgender people living with the virus.

The South has the highest rate of new HIV diagnoses in the country, and many Ending the HIV Epidemic target areas are in the region.

In Louisiana, which has two of those HIV priority areas, the program has helped reduce the number of late HIV diagnoses and maintain levels of viral suppression, said Samuel Burgess, the director of the state’s STI and HIV prevention program.

Even if the budget cuts don’t survive the legislative process fully intact, it’s “very concerning” that lawmakers would even propose such a cut, Burgess said.

HIV policy advocates are pushing back on the House Republican proposal. In July, the Federal AIDS Policy Partnership sent a letter to House appropriators warning of its potential impact.

“We are deeply concerned that this bill will not only stop progress being made to achieve the goals set forth by former President Trump in 2019, but will exacerbate the HIV epidemic which has plagued our nation for 40 years,” they wrote.

Cohen, who started with the CDC in July, is familiar with the budget process, having spent time in top leadership positions within the U.S. Department of Health and Human Services.

But she’s new to the CDC and, regardless of her inside-the-Beltway experience, will need time to get up to speed, which could potentially leave the agency vulnerable, said McGowan. “It’s a difficult time to have a leadership change at the CDC,” he said. But he added that “Dr. Cohen is doing a great job meeting with everyone on the Hill, both Democrats and Republicans.”

The fights over HIV programs concern Tom Frieden, who served as CDC director under former President Barack Obama. He estimated he made more than 250 trips to Capitol Hill over nearly eight years to sell the agency’s work to lawmakers.

He called the Atlanta-based CDC’s location outside of Washington a “double-edged sword.”

“People used to say to me, ‘Gee, isn’t it great, we’re not bugged by politicians down here in Atlanta?’” Frieden said.

While the location helps cushion the agency from politics, he said, it also makes it harder to get support from members of Congress.

But the CDC’s response to covid pulled it back into the political fray. Frieden said he is hopeful the Democratic-controlled Senate will act as a “hard stop” against the Republican attacks — but he warned that substantial cuts can slip through the cracks.

“It’s always a risk that some important stuff at the eleventh hour doesn’t happen,” Frieden said.

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During an August 2022 visit to a hospital in Fort Wayne, Indiana, Amirault told a nurse practitioner she was in severe pain, she said. She received a puzzling response.

“Your Narx Score is so high, I can’t give you any narcotics,” she recalled the man saying, as she waited for an MRI before a hip replacement.

Tools like Narx Scores are used to help medical providers review controlled substance prescriptions. They influence, and can limit, the prescribing of painkillers, similar to a credit score influencing the terms of a loan. Narx Scores and an algorithm-generated overdose risk rating are produced by health care technology company Bamboo Health (formerly Appriss Health) in its NarxCare platform.

Such systems are designed to fight the nation’s opioid epidemic, which has led to an alarming number of overdose deaths. The platforms draw on data about prescriptions for controlled substances that states collect to identify patterns of potential problems involving patients and physicians. State and federal health agencies, law enforcement officials, and health care providers have enlisted these tools, but the mechanics behind the formulas used are generally not shared with the public.

Artificial intelligence is working its way into more parts of American life. As AI spreads within the health care landscape, it brings familiar concerns of bias and accuracy and whether government regulation can keep up with rapidly advancing technology.

The use of systems to analyze opioid-prescribing data has sparked questions over whether they have undergone enough independent testing outside of the companies that developed them, making it hard to know how they work.

Lacking the ability to see inside these systems leaves only clues to their potential impact. Some patients say they have been cut off from needed care. Some doctors say their ability to practice medicine has been unfairly threatened. Researchers warn that such technology — despite its benefits — can have unforeseen consequences if it improperly flags patients or doctors.

“We need to see what’s going on to make sure we’re not doing more harm than good,” said Jason Gibbons, a health economist at the Colorado School of Public Health at the University of Colorado’s Anschutz Medical Campus. “We’re concerned that it’s not working as intended, and it’s harming patients.”

Amirault, 34, said she has dealt for years with chronic pain from health conditions such as sciatica, degenerative disc disease, and avascular necrosis, which results from restricted blood supply to the bones.

The opioid Percocet offers her some relief. She’d been denied the medication before, but never had been told anything about a Narx Score, she said.

In a chronic pain support group on Facebook, she found others posting about NarxCare, which scores patients based on their supposed risk of prescription drug misuse. She’s convinced her ratings negatively influenced her care.

“Apparently being sick and having a bunch of surgeries and different doctors, all of that goes against me,” Amirault said.

Database-driven tracking has been linked to a decline in opioid prescriptions, but evidence is mixed on its impact on curbing the epidemic. Overdose deaths continue to plague the country, and patients like Amirault have said the monitoring systems leave them feeling stigmatized as well as cut off from pain relief.

The Centers for Disease Control and Prevention estimated that in 2021 about 52 million American adults suffered from chronic pain, and about 17 million people lived with pain so severe it limited their daily activities. To manage the pain, many use prescription opioids, which are tracked in nearly every state through electronic databases known as prescription drug monitoring programs (PDMPs).

The last state to adopt a program, Missouri, is still getting it up and running.

More than 40 states and territories use the technology from Bamboo Health to run PDMPs. That data can be fed into NarxCare, a separate suite of tools to help medical professionals make decisions. Hundreds of health care facilities and five of the top six major pharmacy retailers also use NarxCare, the company said.

The platform generates three Narx Scores based on a patient’s prescription activity involving narcotics, sedatives, and stimulants. A peer-reviewed study showed the “Narx Score metric could serve as a useful initial universal prescription opioid-risk screener.”

NarxCare’s algorithm-generated “Overdose Risk Score” draws on a patient’s medication information from PDMPs — such as the number of doctors writing prescriptions, the number of pharmacies used, and drug dosage — to help medical providers assess a patient’s risk of opioid overdose.

Bamboo Health did not share the specific formula behind the algorithm or address questions about the accuracy of its Overdose Risk Score but said it continues to review and validate the algorithm behind it, based on current overdose trends.

Guidance from the CDC advised clinicians to consult PDMP data before prescribing pain medications. But the agency warned that “special attention should be paid to ensure that PDMP information is not used in a way that is harmful to patients.”

This prescription-drug data has led patients to be dismissed from clinician practices, the CDC said, which could leave patients at risk of being untreated or undertreated for pain. The agency further warned that risk scores may be generated by “proprietary algorithms that are not publicly available” and could lead to biased results.

Bamboo Health said that NarxCare can show providers all of a patient’s scores on one screen, but that these tools should never replace decisions made by physicians.

Some patients say the tools have had an outsize impact on their treatment.

Bev Schechtman, 47, who lives in North Carolina, said she has occasionally used opioids to manage pain flare-ups from Crohn’s disease. As vice president of the Doctor Patient Forum, a chronic pain patient advocacy group, she said she has heard from others reporting medication access problems, many of which she worries are caused by red flags from databases.

“There’s a lot of patients cut off without medication,” according to Schechtman, who said some have turned to illicit sources when they can’t get their prescriptions. “Some patients say to us, ‘It’s either suicide or the streets.’”

The stakes are high for pain patients. Research shows rapid dose changes can increase the risk of withdrawal, depression, anxiety, and even suicide.

Some doctors who treat chronic pain patients say they, too, have been flagged by data systems and then lost their license to practice and were prosecuted.

Lesly Pompy, a pain medicine and addiction specialist in Monroe, Michigan, believes such systems were involved in a legal case against him.

His medical office was raided by a mix of local and federal law enforcement agencies in 2016 because of his patterns in prescribing pain medicine. A year after the raid, Pompy’s medical license was suspended. In 2018, he was indicted on charges of illegally distributing opioid pain medication and health care fraud.

“I knew I was taking care of patients in good faith,” he said. A federal jury in January acquitted him of all charges. He said he’s working to have his license restored.

One firm, Qlarant, a Maryland-based technology company, said it has developed algorithms “to identify questionable behavior patterns and interactions for controlled substances, and for opioids in particular,” involving medical providers.

The company, in an online brochure, said its “extensive government work” includes partnerships with state and federal enforcement entities such as the Department of Health and Human Services’ Office of Inspector General, the FBI, and the Drug Enforcement Administration.

In a promotional video, the company said its algorithms can “analyze a wide variety of data sources,” including court records, insurance claims, drug monitoring data, property records, and incarceration data to flag providers.

William Mapp, the company’s chief technology officer, stressed the final decision about what to do with that information is left up to people — not the algorithms.

Mapp said that “Qlarant’s algorithms are considered proprietary and our intellectual property” and that they have not been independently peer-reviewed.

“We do know that there’s going to be some percentage of error, and we try to let our customers know,” Mapp said. “It sucks when we get it wrong. But we’re constantly trying to get to that point where there are fewer things that are wrong.”

Prosecutions against doctors through the use of prescribing data have attracted the attention of the American Medical Association.

“These unknown and unreviewed algorithms have resulted in physicians having their prescribing privileges immediately suspended without due process or review by a state licensing board — often harming patients in pain because of delays and denials of care,” said Bobby Mukkamala, chair of the AMA’s Substance Use and Pain Care Task Force.

Even critics of drug-tracking systems and algorithms say there is a place for data and artificial intelligence systems in reducing the harms of the opioid crisis.

“It’s just a matter of making sure that the technology is working as intended,” said health economist Gibbons.

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But, like many labs around the country, it quickly found the test gave inaccurate results. So test samples had to be sent back to the CDC for processing, wasting time and leaving state officials “sort of blind to what the situation was with the disease,” said St. George, chief of the laboratory of viral diseases at the Wadsworth Center, one of the nation’s largest state public health labs.

“It was extremely unfortunate that it happened at such a critical time, in the early days of this emerging pandemic,” she said.

An independent panel of laboratory researchers, public health and policy experts, and doctors say the CDC’s flawed diagnostic test was one of the “most consequential” of the agency’s pandemic missteps because it stymied national efforts to contain covid-19 as the disease spread.

They blame the test’s shortcomings on a series of problems rooted in how the CDC operated its laboratories: a lack of unified leadership for the labs developing the test; insufficient planning and quality control systems for producing tests for novel pathogens; and ineffective governance that sometimes placed clinical laboratory decisions in the hands of “non-laboratory experts” without diagnostic testing expertise.

The CDC says it’s working to address its liabilities, using the findings of that advisory committee as a guide. It’s a big job — one further complicated by new leadership at the agency, constrained resources, and continued antagonism and threatened budget cuts from members of Congress.

Failure to make sweeping changes could add to a growing lack of trust in the agency post-pandemic and threaten the nation’s preparedness for the next public health threat.

“If the CDC can’t change, their importance in health in the nation will decline,” said Jill Taylor, a senior adviser for the Association of Public Health Laboratories. “The coordination of public health emergency responses in the nation will be worse off.”

The CDC’s original covid test had two key problems, according to an internal analysis in 2021 by a group of agency staff. A design flaw and contamination during production at the CDC led the tests to give false positive results.

The work group that later performed an independent postmortem on the development of the test, using information provided by the CDC, came to the same conclusions.

“It was all surprising to me,” said Joshua Sharfstein, a vice dean at the Johns Hopkins Bloomberg School of Public Health, who co-chaired the panel.

The panel concluded that these failures, fueled by problems within the agency, had human consequences.

“Lacking awareness of how rapidly and widely the virus was spreading, public health agencies were slow to recommend behavior changes or implement protective measures,” its February report said.

A few short weeks after the flawed tests were released, life across the U.S. would grind to a halt, with officials resorting to mass lockdowns to slow the spread of the virus that has killed more than 1.1 million Americans.

The advisory group made 10 recommendations for how the CDC could prevent future failures when developing diagnostic tests, such as consolidating all lab operations into a new center with its own leadership, separating research labs from those that develop clinical tests, and having independent, outside experts review tests made for pathogens with pandemic potential.

The agency began acting on some of those suggestions under the leadership of Rochelle Walensky, before she left her post as director in June, as part of the larger effort to overhaul the CDC. It instituted new agency-wide lab quality standards, started working to improve coordination with state labs, and established an internal review board to approve tests shared outside the CDC.

In July, Mandy Cohen took over as Walensky’s successor. Cohen held top leadership positions at the Centers for Medicare & Medicaid Services during the Obama administration but not within the CDC. Already, she has run into headwinds from Republican members of Congress, who influence the agency’s budget. Still, an agency spokesperson said these won’t be major challenges.

“Improvements to further strengthen CDC’s labs are well underway,” said CDC spokesperson Kevin Griffis. “Reforms will continue to move ahead at full speed.”

Other leaders within the agency said funding could prove a critical obstacle to instituting the recommended changes.

The agency is staring down a cut to one-time funding of more than $1 billion in the wake of this summer’s debt ceiling deal — more than one-tenth of its enacted core operating budget in fiscal year 2023. Republicans in the House are mulling legislation that would cut an additional $1.6 billion in the upcoming fiscal year.

Recommendations for the agency to physically separate its clinical labs from its research labs or to train researchers to uphold new quality standards will be heavy lifts because they require continuous funding, said Jim Pirkle, associate director for laboratory science and safety at the CDC.

“You can’t get one bolus of money, and then say, ‘OK, now that solves it till the end of time,’” he said. “The things that we’re talking about are things that we have to sustain.”

And money is only one piece of the puzzle, said the Association of Public Health Laboratories’ Taylor, who also co-chaired the advisory group.

A culture change will also be required, she said, in which scientists inside the CDC see themselves as part of the larger U.S. laboratory community, subject to the same quality standards.

The advisory group looking at the covid test development found clinical lab decisions were made “by experts in basic science research rather than by certified clinical laboratory professionals.”

In addition, research and clinical work would happen in the same lab space, which made it hard to ensure quality standards for test development and “very easy to cut corners,” Taylor said.

“CDC has considered itself a bit special and not necessarily needing to follow the rules like everyone else does, and that’s a shame,” Taylor said.

Taylor said failure to implement the work group’s recommendations could force the CDC to cede ground to commercial lab companies in developing diagnostic tests for new disease threats.

While commercial labs can operate at larger scales than public health labs can, they are for-profit entities and motivated by the market.

In a recent article, leaders of the American Clinical Laboratory Association, an industry trade group, wrote that some lab companies delayed creating a covid test until “clear signals that a testing market would materialize.”

The CDC does that work without worrying about making money, said Anne Schuchat, former principal deputy director of the agency. In other words, they develop a test “because there’s a new pathogen, and we need to know what’s going on,” she said.

As the covid pandemic has shown, threats that might start small can quickly spread, take millions of lives, and cause years of global disruption.

Schuchat said the ability of the CDC to have the capacity to develop an accurate test to pinpoint novel pathogens and how they’re spreading is critical.

“Our protection depends on it,” she said.

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The 58-year-old lawyer who lives in Phoenix has an immunodeficiency disease that increases his risk of severe outcomes from covid-19 and other infections. He has spent lots of time since 2020 checking state, federal, and private sector covid trackers for data to inform his daily decisions.

“I’m assessing ‘When am I going to see my grandkids? When am I going to let my own kids come into my house?’” he said.

Many Americans have moved on from the pandemic, but for the millions who are immunocompromised or otherwise more vulnerable to covid, reliable data remains important in assessing safety.

“I don’t have that luxury to completely shrug it off,” Wakefield said.

The federal government’s public health emergency that’s been in effect since January 2020 expires May 11. The emergency declaration allowed for sweeping changes in the U.S. health care system, like requiring state and local health departments, hospitals, and commercial labs to regularly share data with federal officials.

But some shared data requirements will come to an end and the federal government will lose access to key metrics as a skeptical Congress seems unlikely to grant agencies additional powers. And private projects, like those from The New York Times and Johns Hopkins University, which made covid data understandable and useful for everyday people, stopped collecting data in March.

Public health legal scholars, data experts, former and current federal officials, and patients at high risk of severe covid outcomes worry the scaling back of data access could make it harder to control covid.

There have been improvements in recent years, such as major investments in public health infrastructure and updated data reporting requirements in some states. But concerns remain that the overall shambolic state of U.S. public health data infrastructure could hobble the response to any future threats.

“We’re all less safe when there’s not the national amassing of this information in a timely and coherent way,” said Anne Schuchat, former principal deputy director of the Centers for Disease Control and Prevention.

A lack of data in the early days of the pandemic left federal officials, like Schuchat, with an unclear picture of the rapidly spreading coronavirus. And even as the public health emergency opened the door for data-sharing, the CDC labored for months to expand its authority.

Eventually, more than a year into the pandemic, the CDC gained access to data from private health care settings, such as hospitals and nursing homes, commercial labs, and state and local health departments.

CDC officials have been working to retain its authority over some information, such as vaccination records, said Director Rochelle Walensky.

Walensky told the U.S. House in February that expanding the CDC’s ability to collect public health data is critical to its ability to respond to threats.

“The public expects that we will jump on things before they become public health emergencies,” she later told KFF Health News. “We can’t do that if we don’t have access to data.”

The agency is negotiating information-sharing agreements with dozens of state and local governments, Walensky said, as well as partnering with the Centers for Medicare & Medicaid Services. It is also lobbying for the legal power to access data from both public and private parts of the health care system. The hospital data reporting requirement was decoupled from the health emergency and is set to expire next year.

But it’s an uphill battle.

“Some of those data points we may not have anymore,” Walensky said, noting how access to covid test results from labs will disappear. That data became a less precise indicator as people turned to at-home testing.

Moving forward, Walensky said, the CDC’s covid tracking will resemble its seasonal flu surveillance, which uses information from sample sites to establish broad trends. It’ll offer a less granular view of how covid is spreading, which experts worry could make it harder to notice troubling new viral variants early.

Overall, federal courts — including the U.S. Supreme Court — have not been supportive of expanded public health powers in recent years. Some issued rulings to block mask mandates, pause mandatory covid vaccination requirements, and end the nationwide eviction moratorium.

Such power limits leave the CDC with its “utterly dysfunctional, antiquated” data collection system, said Lawrence Gostin, director of the O’Neill Institute for National and Global Health Law at Georgetown University. It’s like a “mosaic,” he said, in which states and territories collect data their own way and decide how much to share with federal officials.

Although covid numbers are trending down, the CDC still counts thousands of new infections and hundreds of new deaths each week. More than 1,000 Americans are also hospitalized with covid complications daily.

“When we stop looking, it makes it all more invisible,” Gostin said. “Covid knowledge and awareness is going to melt into the background.”

State and local public health officials are generally willing to share data with federal agencies, but they often run into legal hurdles that prevent them from doing so, said Marcus Plescia, chief medical officer of the Association of State and Territorial Health Officials.

It will take a lot of work to loosen state restrictions on public health data. And the political will may be lacking, considering many jurisdictions have rolled back public health powers in recent years. Until rules change, the CDC’s power to help states is limited, Plescia said.

“Their hands are tied a little bit in how much they can do,” he said.

Public health officials rely on data to target interventions and track how well they’re working. A lack of information can create blind spots that exacerbate poor outcomes for high-risk populations, said Denise Chrysler, a senior adviser for the Network for Public Health Law.

“If you don’t have the data, you can’t locate who you’re failing to serve. They’re going to fall between the cracks,” she said.

The lack of covid data broken down by race and ethnicity in the early days of the pandemic obscured the outsize impact covid had on marginalized groups, such as Black and Hispanic people, Chrysler said. Some states, like New Jersey and Arizona, issued rules to mandate the collection of race and ethnicity data for covid, but they were temporary and tied to state emergency declarations, she said.

Inconsistent local data precipitated the end of privately run projects that supplemented government resources.

The available data researchers could pull from “was just terrible,” said Beth Blauer, associate vice provost for public sector innovation at Johns Hopkins, who helped launch its dashboard. The decision to end the program was practical.

“We were relying on publicly available data sources, and the quality had rapidly eroded in the last year,” she said.

The fast collapse of the data network also raises questions about state and local agencies’ long-term investments in tracking covid and other threats.

“I wish that we had a set of data that would help us guide personal decision-making,” Blauer said. “Because I’m still fearful of a pandemic that we don’t really know a ton about.”

To Schuchat, formerly of the CDC, there’s a lot of ground to regain after years of underinvestment in public health, long before the covid pandemic — and high stakes in ensuring good data systems.

The CDC’s detection of a vaping-related lung illness in 2019 was recognized after case reports from a hospital in Wisconsin, she said. And she attributed the nation’s slow reaction to the opioid crisis to poor access to emergency room data showing a troubling trend in overdoses.

“We’re much better when we detect things before there’s an emergency,” Schuchat said. “We can prevent major emergencies from happening.”

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“Pensé que era una sentencia de muerte, cuando tienes llagas y te deterioras”, dijo.

Ferraro se enteró de su estatus de VIH a través de una iniciativa de la Facultad de Medicina Miller de la Universidad de Miami llamada IDEA Exchange, que enviaba médicos y estudiantes de medicina a la esquina donde pedía limosna.

Se hizo la prueba y se inscribió en el programa, que también proporciona jeringas limpias, medicamentos para revertir las sobredosis, y fármacos para la prevención y el tratamiento del VIH.

En circunstancias normales, podría haber pasado meses antes de que Ferraro comenzara con la medicación de supresión viral, si es que lo lograba. Pero el mismo día que se enteró de su estatus, un médico de IDEA Exchange comenzó a recetarle medicamentos.

Ahora, su VIH está bajo control y está recuperándose del consumo de drogas. “Salvan vidas”, dijo Ferraro, ahora de 55 años, y agregó que lo trataron con amabilidad y respeto, y no se sintió estigmatizado, lo que lo alentó a iniciar el tratamiento.

Lanzado en 2016, IDEA Exchange practica un nuevo enfoque para tratar y prevenir las infecciones por VIH que combina la telemedicina con la divulgación directa, ayudado por más de $400,000 en subvenciones de los Centros para el Control y la Prevención de Enfermedades (CDC) y otras agencias federales.

La financiación forma parte de un esfuerzo nacional lanzado por la Casa Blanca en 2019, bajo el ex presidente Donald Trump, llamado “Terminar con la epidemia de VIH en EE.UU.”. La iniciativa federal tiene como objetivo reducir el número de nuevas infecciones por VIH en todo el país en un 75% para 2025, y en un 90% para 2030.

Los funcionarios esperan lograr estos hitos financiando nuevas estrategias enfocadas en cada comunidad para brindar atención a grupos difíciles de alcanzar, como las personas que se inyectan drogas y otras que viven con VIH, o están en riesgo de contraerlo.

Las agencias federales de salud han enviado cientos de millones de dólares a las ciudades, estados y territorios más afectados por la epidemia, muchos en el sur. Georgia, Louisiana y Florida estuvieron entre los estados con las tasas más altas de nuevos diagnósticos de VIH en 2020, según los CDC.

Sin embargo, las personas que viven con VIH, médicos, expertos en enfermedades infecciosas, grupos comunitarios y algunos de los principales funcionarios de VIH del país dicen que la iniciativa podría no cumplir con su principal objetivo para 2030.

“¿Creo que todo el país va a alcanzar esa meta? No lo creo”, dijo Harold Phillips, jefe de la Oficina Nacional de Política del SIDA de la Casa Blanca.

La pandemia de covid-19, la escasez de personal y la burocracia han frenado los esfuerzos de respuesta al VIH. Y los programas locales han sido obstaculizados en lugares donde el estigma y la discriminación son fomentados por mensajes anti-LGBTQ+ de los funcionarios electos, especialmente en estados donde los legisladores han propuesto restricciones en la atención médica, la educación y los espectáculos de drag queens.

“No estamos todos en el mismo punto de partida”, dijo Phillips.

Debido a las interrupciones de la pandemia, los funcionarios federales no han tenido estimaciones sólidas de nuevas infecciones o el número de personas que viven con VIH desde finales de 2019, dijo Phillips.

Los datos disponibles sugieren que el objetivo de reducir drásticamente las nuevas infecciones está muy lejos. Las pruebas de VIH y la aceptación de medicamentos preventivos, como la profilaxis previa a la exposición o PrEP, y los medicamentos para la supresión viral también se están quedando cortos.

La Casa Blanca espera tener datos más precisos este año que permitan a los funcionarios ajustar los esfuerzos de respuesta al VIH para recuperar el terreno perdido, dijo Phillips.

Desde 2019, el Congreso ha aumentado gradualmente el gasto en los esfuerzos del programa para prevenir el VIH (son $573 millones para el año fiscal actual), pero ha proporcionado repetidamente menos de lo que Trump o, más tarde, el presidente Joe Biden, solicitaron.

Ahora, con los republicanos buscando fuertes recortes presupuestarios, la solicitud actual de Biden de $850 millones se encuentra en terreno inestable.

Pero incluso cuando la administración busca más dinero, los funcionarios de salud pública estatales y locales no han podido gastar todos los cientos de millones que se les han otorgado.

KFF Health News se puso en contacto con varios condados y estados en febrero para preguntarles cómo gastaban el dinero del Departamento de Salud y Servicios Humanos (HHS) destinado a poner fin a la epidemia del VIH.

Kentucky, Carolina del Sur y Arkansas habían gastado menos de la mitad de sus asignaciones. Y funcionarios en los condados de DeKalb, Georgia; Harris, Texas; y Mecklenburg, Carolina del Norte, dijeron que aún tenían que gastar todos sus fondos.

Esos dólares deben utilizarse dentro de los límites del condado, lo que reduce su impacto en las partes periféricas del área metropolitana, dijo Matt Jenkins, director de la división de VIH/ETS de Salud Pública del Condado de Mecklenburg, en Charlotte.

Y los requisitos de que los contratos de más de $100,000 pasen por un proceso de licitación intenso, y que las decisiones finales de gastos reciban la aprobación del estado también actúan como obstáculos, dijo Jenkins.

Estos procesos administrativos pueden dificultar que el dinero federal llegue a los proveedores locales de servicios para el VIH que se dirigen a comunidades a las que antes no se llegaba. En cambio, dijo Jenkins, la financiación tiende a fluir hacia grupos bien establecidos que pueden llenar una comunidad con el mismo tipo de servicio, como más lugares para realizar pruebas.

“¿Es eso nuevo e innovador? No”, dijo.

Mientras funcionarios como Jenkins se enfrentan a problemas burocráticos y logísticos, algunos programas de VIH también enfrentan obstáculos políticos e ideológicos desde hace décadas.

Este es el caso en el condado de Tarrant, Texas, dijo Hope Adams, gerente del programa local “Terminar con la Pandemia de VIH”. Los líderes allí dudan en reconocer que el VIH afecta de manera desproporcionada a grupos marginados como hombres negros e hispanos homosexuales y bisexuales, mujeres negras heterosexuales y personas transgénero.

“Si niega que existe una discriminación sistémica, entonces no se querrá financiar programas que digan: ‘Oye, debemos centrarnos en las poblaciones desfavorecidas’”, dijo.

Esa mentalidad también limita la forma en que su agencia puede llegar a las personas, dijo Adams. Le gustaría promocionar servicios en aplicaciones de citas como Grindr y Tinder, pero dijo que solo puede usar las “seguras”: Facebook, Instagram y Twitter.

“Nuestro mensaje tiene que ser conservador. Tiene que estar redactado con mucha delicadeza. No puedes tener una imagen de un condón, por ejemplo”, dijo. “Nos afecta en términos de transmitir nuestro mensaje de una manera que se conecte con las personas y con la audiencia adecuada”.

Reconocer los problemas estructurales puede hacer que los funcionarios sean etiquetados como “activistas o progresistas”, inyectando política en la salud pública y “socavando” el progreso, a pesar de los avances científicos logrados en el tratamiento y la prevención del VIH.

Al igual que la pandemia de covid, la epidemia de VIH ha puesto de relieve las desigualdades sociales y económicas de larga data, que reducen el acceso a la atención.

Aunque la mayoría de las personas con seguro privado no pagan de su bolsillo la PrEP, y las visitas al médico y las pruebas de laboratorio relacionadas, eso puede cambiar, en espera del resultado final de una impugnación legal a un mandato de la Ley de Cuidado de Salud a Bajo Precio (ACA) de que la mayoría de los planes de seguro privados cubran los servicios preventivos recomendados. Derogar el requisito podría hacer que la atención preventiva del VIH fuera inasequible para muchas personas.

Mitchell Warren, director ejecutivo de AVAC, un grupo mundial de defensa del VIH, señaló también otros desafíos sociales, como los legisladores en distintas partes de Estados Unidos atacando la atención de afirmación de género, espectáculos de drag y programas de diversidad, equidad e inclusión. La política, y la presión de los activistas conservadores, llevaron recientemente al estado de Tennessee a rechazar más de $8 millones en fondos federales para combatir el VIH.

“A menudo pensamos que el VIH tiene que ver con los condones, la terapia antirretroviral y la PrEP”, dijo Warren. “Es así. Pero esos productos solo ayudan a las personas si pueden ingresar a un centro donde las traten con respeto, con atención de alta calidad, donde no les preocupe que la clínica sea bombardeada o cerrada por la controversia”.

Phillips, de la Casa Blanca, un hombre abiertamente homosexual que vive con VIH, reconoció el “entorno difícil” actual y dijo que recordaba “los días en que el VIH tenía apoyo bipartidista”.

Esperaba que los funcionarios electos pudieran volver a encontrar ese terreno común, reconocer el valor de la prevención del VIH y continuar invirtiendo en ella, incluso más allá de la fecha límite de 2030.

Poner fin a la epidemia requerirá una financiación sostenida y voluntad política, que pueden verse amenazadas independientemente de si un programa falla en su objetivo o muestra signos de éxito, dijo Bernard Davis, presidente de RAO Community Health, una clínica en Charlotte.

“Cuando comienzas a ver que los resultados se ven mejor que antes, entonces eliminas esos dólares”, dijo. “Y bien, la comunidad vuelve a donde estaba al principio, porque esos recursos ya no están”.

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“I thought it was a death sentence, where you have sores and you deteriorate,” he said.

Ferraro learned of his HIV status through a University of Miami Miller School of Medicine initiative called IDEA Exchange, which sent doctors and medical students to the corner where he panhandled. He got tested and enrolled in the program, which also provides clean syringes, overdose reversal medications, and HIV prevention and treatment drugs.

Under normal circumstances, it could have taken months for Ferraro to get on viral suppression medication, if he got on it at all. But the same day he learned his status, an IDEA Exchange doctor started Ferraro on a drug regimen.

His HIV is now in check, and he is recovering from drug use. “They save lives,” said Ferraro, now 55, adding that he was treated with kindness and respect and didn’t feel stigmatized, which encouraged him to enter treatment.

Launched in 2016, IDEA Exchange practices a new approach to treating and preventing HIV infections that combines telehealth with direct outreach, aided by more than $400,000 in grants from the Centers for Disease Control and Prevention and other federal agencies. The funding is part of a national effort launched by the White House in 2019, under former President Donald Trump, called Ending the HIV Epidemic in the U.S.

The federal initiative aims to cut the number of new HIV infections nationwide by 75% by 2025 and 90% by 2030. Officials hope to achieve those milestones by funding new, community-specific strategies to deliver care to hard-to-reach groups, such as people who inject drugs, and others who are living with or at risk of contracting HIV.

Federal health agencies have sent hundreds of millions of dollars to cities, states, and territories hit hardest by the epidemic — many in the South. Georgia, Louisiana, and Florida were among the states with the highest rates of new HIV diagnoses in 2020, according to the CDC.

But people living with HIV, doctors, infectious disease experts, community groups, and some of the nation’s top HIV officials say the initiative could miss its main 2030 goal.

“Do I think the whole country is going to make it there? I don’t think so,” said Harold Phillips, head of the White House Office of National AIDS Policy.

The covid-19 pandemic, workforce shortages, and bureaucratic red tape have slowed HIV response efforts. And local programs have been hobbled in places where stigma and discrimination are fanned by anti-LGBTQ+ messaging from elected officials, especially in states where legislators have proposed restrictions on health care, education, and drag shows.

“We all were not at the same starting point,” Phillips said.

Because of pandemic disruptions, federal officials haven’t had solid estimates of new infections or the number of people living with HIV since the end of 2019, Phillips said. The available data suggests the goal of dramatically reducing new infections is a long way off. HIV testing and uptake of preventive drugs, such as preexposure prophylaxis, or PrEP, and viral suppression medications are also falling short.

The White House hopes to have more accurate data this year that will allow officials to adjust HIV response efforts to make up lost ground, Phillips said.

Since 2019, Congress has incrementally increased spending on the program’s efforts to prevent HIV — it’s $573 million for the current fiscal year — but has repeatedly provided less than what Trump or, later, President Joe Biden requested. Now, with Republicans angling for steep budget cuts, Biden’s current request for $850 million stands on shaky ground.

But even as the administration seeks more money, state and local public health officials have been unable to spend all the hundreds of millions they’ve been granted.

KFF Health News contacted several counties and states in February to ask how they spent money from the U.S. Department of Health and Human Services meant for ending the HIV epidemic. Kentucky, South Carolina, and Arkansas had spent less than half of their allocations. And county officials in DeKalb County, Georgia; Harris County, Texas; and Mecklenburg County, North Carolina, said they had also yet to spend all their Ending the HIV Epidemic funding.

Those dollars have to be spent within county lines, which reduces their impact in outlying parts of the metro area, said Matt Jenkins, director of the HIV/STD division of Mecklenburg County Public Health in Charlotte.

And requirements that contracts over $100,000 go through a “labor-intensive” bidding process and that final spending decisions receive state approval also act as roadblocks, Jenkins said.

Such administrative processes can make it harder for federal money to reach local HIV service providers that target previously unreached communities. Instead, Jenkins said, funding tends to flow to well-established groups that may crowd a community with the same type of service, like more locations for testing.

 “Is that new and innovative? No,” he said.

While officials like Jenkins navigate bureaucratic and logistical problems, some HIV programs also face decades-old political and ideological obstacles.

This is the case in Tarrant County, Texas, said Hope Adams, manager for the local Ending the HIV Epidemic program. Leaders there hesitate to acknowledge that HIV disproportionately affects marginalized groups such as gay and bisexual Black and Hispanic men, Black heterosexual women, and transgender people.

“If you deny that systemic discrimination exists, then you’re not going to want to fund programs that say, ‘Hey, we need to focus on disadvantaged populations,’” she said.

That mindset also limits how her agency can reach people, Adams said. She’d like to promote services on dating apps like Grindr and Tinder but said she’s allowed to use only “the safe ones”: Facebook, Twitter, and Instagram.

“Our messaging has to be conservative. It has to be very delicately phrased. You can’t have an image of a condom, for example,” she said. “It affects us in terms of getting our message out in a way that connects with people and to the right audience.”

Acknowledging structural problems can get officials labeled as “woke,” injecting politics into public health and undermining progress — despite the scientific advances made in treating and preventing HIV.

Like the covid pandemic, the HIV epidemic has highlighted long-standing social and economic inequities, which reduce access to care.

Though most people with private insurance do not pay out-of-pocket for PrEP and related doctor visits and lab tests, that may change, pending the final outcome of a legal challenge to an Affordable Care Act mandate that most private insurance plans cover recommended preventive care services. Overturning the requirement could make preventive HIV care unaffordable for many people.

Mitchell Warren, executive director of AVAC, a global HIV advocacy group, pointed also to other social challenges, such as lawmakers across the U.S. targeting gender-affirming care, drag shows, and diversity, equity and inclusion programs. Politics — and pressure from conservative activists — recently led the state of Tennessee to turn down more than $8 million in federal funding to fight HIV.

“We often think HIV is about condoms and antiretroviral therapy and PrEP,” Warren said. “It is. But those products only help people if they can go into a facility where they are treated with respect, with high-quality care, where they’re not worried that the clinic is going to get bombed or closed down in controversy.”

The White House’s Phillips, an openly gay man living with HIV, acknowledged the current “tough environment” and said he remembered “the days when HIV had bipartisan support.”

He hoped that elected officials could find that common ground again, recognize the value of HIV prevention, and continue to invest in it — even beyond the 2030 deadline.

Ending the epidemic will require sustained funding and political will, which can be threatened regardless of whether a program misses its mark or shows signs of success, said Bernard Davis, president of RAO Community Health, a clinic in Charlotte.

“When you begin to see the outcomes looking better than they did before, you then remove those dollars,” he said. “Well, the community goes back to where it was from the beginning, because those resources are no longer there.”

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“Muchos directamente insultan”, dijo la mujer de 40 años, que vive en Dallas. “Dicen cosas como ‘no tratamos drogadictos'”.

Layman ha probado una serie de tratamientos no opioides para que la ayuden con el intenso dolor diario que le causa su escoliosis doble, un disco vertebral colapsado, y su artritis articular facetaria. Pero dijo que nada funcionaba tan bien como la metadona, un opioide que ha tomado desde 2013.

Dijo que las últimas llamadas telefónicas fueron a fines del año pasado, después que su médico anterior cerrara su práctica de medicina del dolor. Espera que su actual médico no haga lo mismo. “No tendría adónde ir”, agregó.

Layman es una de las millones de personas en los Estados Unidos que viven con dolor crónico. Muchos han tenido problemas para obtener recetas de opioides, y surtirlas, desde que las pautas de 2016 de los Centros para el Control y la Prevención de Enfermedades (CDC) inspiraron leyes que toman medidas enérgicas contra las prácticas médicas y farmacéuticas.

Los CDC actualizaron recientemente esas recomendaciones para tratar de aliviar su impacto, pero médicos, pacientes, investigadores y defensores dicen que el daño ya está hecho.

“Teníamos un problema masivo con los opioides que debía rectificarse”, dijo Antonio Ciaccia, presidente de 3 Axis Advisors, una firma consultora que analiza los precios de los medicamentos recetados. “Pero las medidas enérgicas y las pautas federales han creado daños colaterales: los pacientes sin recursos”.

Nacido de un esfuerzo por combatir la crisis nacional de sobredosis, la guía condujo a restricciones legales sobre la capacidad de los médicos para recetar analgésicos.

Las recomendaciones dejaron a muchos pacientes lidiando con las consecuencias para la salud mental y física de la reducción rápida de la dosis o la suspensión abrupta de los medicamentos que habían estado tomando durante años, lo que conlleva riesgos de abstinencia, depresión, ansiedad e incluso suicidio.

En noviembre, la agencia publicó nuevas guías, alentando a los médicos a concentrarse en las necesidades individuales de los pacientes. Si bien las pautas aún dicen que los opioides no deberían ser la opción preferida para el dolor, facilitan las recomendaciones sobre los límites de las dosis, que eran estrictos en la guía de los CDC de 2016. Los nuevos estándares también advierten a los médicos sobre los riesgos asociados con los cambios rápidos de dosis después del consumo prolongado.

Pero a algunos médicos les preocupa que las nuevas recomendaciones tarden mucho en lograr un cambio significativo, y pueden ser pocas o llegar tarde para algunos pacientes. Las razones incluyen la falta de coordinación de otras agencias federales, el miedo a las consecuencias legales entre los proveedores, los legisladores estatales que dudan en modificar las leyes y el estigma generalizado que rodea a los medicamentos opioides.

Las pautas de 2016 para recetar opioides a personas con dolor crónico llenaron un vacío para los funcionarios estatales que buscaban soluciones a la crisis de las sobredosis, dijo la doctora Pooja Lagisetty, profesora asistente de medicina en la Facultad de Medicina de la Universidad de Michigan.

Lagisetty dijo que las docenas de leyes que aprobaron los estados que limitan la forma en que los proveedores recetan o dispensan esos medicamentos tuvieron un efecto: una disminución en las recetas de opioides incluso cuando las sobredosis continuaron aumentando.

Las primeras pautas de los CDC “alertaron a todos”, dijo el doctor Bobby Mukkamala, presidente del Grupo de Trabajo de Atención del Dolor y Uso de Sustancias de la Asociación Médica Estadounidense. Los médicos redujeron la cantidad de píldoras de opioides que recetan después de las cirugías, dijo. Las revisiones de 2022 son “un cambio dramático”, dijo.

Es difícil exagerar el costo humano de la crisis de los opioides. Las muertes por sobredosis de opioides han aumentado de manera constante en los Estados Unidos en las últimas dos décadas, con un pico al principio de la pandemia de covid-19. Los CDC dicen que el fentanilo ilícito ha alimentado un aumento reciente en las muertes por sobredosis.

Teniendo en cuenta la perspectiva de los pacientes con dolor crónico, las recomendaciones más recientes intentan reducir algunos de los daños a las personas que se habían beneficiado de los opioides pero a los que se les cortó el suministro, dijo la doctora Jeanmarie Perrone, directora del Penn Medicine Center for Addiction Medicine and Policy.

“Espero que sigamos difundiendo la precaución sin propagar demasiado el temor de nunca usar opioides”, dijo Perrone, quien ayudó a elaborar las últimas recomendaciones de los CDC.

Christopher Jones, director del Centro Nacional para la Prevención y el Control de Lesiones de los CDC, dijo que las recomendaciones actualizadas no son un mandato regulatorio sino solo una herramienta para ayudar a los médicos a “tomar decisiones informadas y centradas en la persona relacionadas con el tratamiento del dolor”.

Múltiples estudios cuestionan si los opioides son la forma más efectiva de tratar el dolor crónico a largo plazo. Pero la reducción gradual de las drogas se asocia con muertes por sobredosis y suicidio, y el riesgo aumenta cuanto más tiempo una persona ha estado tomando opioides, según una investigación del doctor Stefan Kertesz, profesor de medicina en la Universidad de Alabama-Birmingham.

Dijo que la nueva guía de los CDC refleja “una cantidad extraordinaria de aportes” de los pacientes con dolor crónico y sus médicos, pero duda que tenga un gran impacto si la Administración de Drogas y Alimentos (FDA) y la Administración de Control de Drogas (DEA) no cambian la forma en que hacen cumplir las leyes federales.

La FDA aprueba nuevos medicamentos y sus reformulaciones, pero la orientación que brinda sobre cómo comenzar o removerle la droga a los pacientes podría instar a los médicos a hacerlo con precaución, dijo Kertesz. La DEA, que investiga a los médicos sospechosos de recetar ilegalmente opioides, se negó a comentar.

La búsqueda de médicos por parte de la DEA puso a Danny Elliott, de Warner Robins, Georgia, en una situación horrible, dijo su hermano, Jim.

En 1991, Danny, representante de una empresa farmacéutica, sufrió una descarga eléctrica. Tomó medicamentos para el dolor por la lesión cerebral resultante durante años hasta que su médico enfrentó cargos federales por dispensar ilegalmente opioides recetados, contó Jim.

Danny recurrió a médicos fuera del estado, primero en Texas y luego en California. Pero la DEA suspendió la licencia de su último médico el año pasado y no pudo encontrar un nuevo médico que le recetara esos medicamentos, dijo Jim.

Danny, de 61 años, y su esposa, Gretchen, de 59, se suicidaron en noviembre. “Estoy realmente frustrado y enojado porque los pacientes con dolor son maltratados”, dijo Jim.

Poco antes de morir, Danny se convirtió en un defensor contra la reducción forzada de drogas. Los pacientes con dolor crónico que hablaron con KHN señalaron su difícil situación al pedir más acceso a medicamentos opioides.

Incluso para las personas que tienen receta, no siempre es fácil obtener los medicamentos que necesitan.

Las cadenas de farmacias y los mayoristas de medicamentos han resuelto demandas por miles de millones de dólares por su supuesto papel en la crisis de los opioides. Algunas farmacias han visto limitadas o cortadas sus asignaciones de opioides, señaló Ciaccia, de 3 Axis Advisors.

Rheba Smith, de 61 años, de Atlanta, dijo que en diciembre su farmacia dejó de surtir sus recetas de Percocet y MS Contin. Había tomado esos medicamentos opioides durante años para controlar el dolor crónico después de que le cortaran el nervio ilíaco por error durante una cirugía, contó.

Smith dijo que visitó casi dos docenas de farmacias a principios de enero, pero no pudo encontrar una que pudiera surtir sus recetas. Finalmente encontró una farmacia local de pedidos por correo que le surtió un suministro de Percocet para un mes. Pero ahora ese medicamento y MS Contin no están disponibles, le dijeron en la farmacia.

“Han sido tres meses horribles. He tenido un dolor terrible”, dijo Smith.

Muchos pacientes temen un futuro de dolor constante. Layman piensa en todo lo que haría para conseguir medicamentos.

“¿Estarías dispuesto a comprar drogas en la calle? ¿A ir a una clínica de adicciones y tratar de recibir tratamiento para el dolor allí? ¿Qué estás dispuesto a hacer para seguir con vida? dijo. “A eso se reduce todo”.

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“A lot of them are straight-up insulting,” said the 40-year-old, who lives in Dallas. “They say things like ‘We don’t treat drug addicts.’”

Layman has tried a host of non-opioid treatments to help with the intense daily pain caused by double scoliosis, a collapsed spinal disc, and facet joint arthritis. But she said nothing worked as well as methadone, an opioid she has taken since 2013.

The latest phone calls came late last year, after her previous doctor shuttered his pain medicine practice, she said. She hopes her current doctor won’t do the same. “If something should happen to him, there’s nowhere for me to go,” she said.

Layman is one of the millions in the U.S. living with chronic pain. Many have struggled to get opioid prescriptions written and filled since 2016 guidelines from the Centers for Disease Control and Prevention inspired laws cracking down on doctor and pharmacy practices. The CDC recently updated those recommendations to try to ease their impact, but doctors, patients, researchers, and advocates say the damage is done.

“We had a massive opioid problem that needed to be rectified,” said Antonio Ciaccia, president of 3 Axis Advisors, a consulting firm that analyzes prescription drug pricing. “But the federal crackdowns and guidelines have created collateral damage: patients left high and dry.”

Born of an effort to fight the nation’s overdose crisis, the guidance led to legal restrictions on doctors’ ability to prescribe painkillers. The recommendations left many patients grappling with the mental and physical health consequences of rapid dose tapering or abruptly stopping medication they’d been taking for years, which carries risks of withdrawal, depression, anxiety, and even suicide.

In November, the agency released new guidelines, encouraging physicians to focus on the individual needs of patients. While the guidelines still say opioids should not be the go-to option for pain, they ease recommendations about dose limits, which were widely viewed as hard rules in the CDC’s 2016 guidance. The new standards also warn doctors about risks associated with rapid dose changes after long-term use.

But some doctors worry the new recommendations will take a long time to make a meaningful change — and may be too little, too late for some patients. The reasons include a lack of coordination from other federal agencies, fear of legal consequences among providers, state policymakers hesitant to tweak laws, and widespread stigma surrounding opioid medication.

The 2016 guidelines for prescribing opioids to people with chronic pain filled a vacuum for state officials searching for solutions to the overdose crisis, said Dr. Pooja Lagisetty, an assistant professor of medicine at the University of Michigan Medical School.

The dozens of laws that states passed limiting how providers prescribe or dispense those medications, she said, had an effect: a decline in opioid prescriptions even as overdoses continued to climb.

The first CDC guidelines “put everybody on notice,’’ said Dr. Bobby Mukkamala, chair of the American Medical Association’s Substance Use and Pain Care Task Force. Physicians reduced the number of opioid pills they prescribe after surgeries, he said. The 2022 revisions are “a dramatic change,” he said.

The human toll of the opioid crisis is hard to overstate. Opioid overdose deaths have risen steadily in the U.S. in the past two decades, with a spike early in the covid-19 pandemic. The CDC says illicit fentanyl has fueled a recent surge in overdose deaths.

Taking into account the perspective of chronic pain patients, the latest recommendations try to scale back some of the harms to people who had benefited from opioids but were cut off, said Dr. Jeanmarie Perrone, director of the Penn Medicine Center for Addiction Medicine and Policy.

“I hope we just continue to spread caution without spreading too much fear about never using opioids,” said Perrone, who helped craft the CDC’s latest recommendations.

Christopher Jones, director of the CDC’s National Center for Injury Prevention and Control, said the updated recommendations are not a regulatory mandate but only a tool to help doctors “make informed, person-centered decisions related to pain care.”

Multiple studies question whether opioids are the most effective way to treat chronic pain in the long term. But drug tapering is associated with deaths from overdose and suicide, with risk increasing the longer a person had been taking opioids, according to research by Dr. Stefan Kertesz, a professor of medicine at the University of Alabama-Birmingham.

He said the new CDC guidance reflects “an extraordinary amount of input” from chronic pain patients and their doctors but doubts it will have much of an impact if the FDA and the Drug Enforcement Administration don’t change how they enforce federal laws.

The FDA approves new drugs and their reformulations, but the guidance it provides for how to start or wean patients could urge clinicians to do so with caution, Kertesz said. The DEA, which investigates physicians suspected of illegally prescribing opioids, declined to comment.

The DEA’s pursuit of doctors put Danny Elliott of Warner Robins, Georgia, in a horrible predicament, said his brother, Jim.

In 1991, Danny, a pharmaceutical company rep, suffered an electric shock. He took pain medicine for the resulting brain injury for years until his doctor faced federal charges of illegally dispensing prescription opioids, Jim said.

Danny turned to doctors out of state — first in Texas and then in California. But Danny’s latest physician had his license suspended by the DEA last year, and he couldn’t find a new doctor who would prescribe those medications, Jim said.

Danny, 61, and his wife, Gretchen, 59, died by suicide in November. “I’m really frustrated and angry about pain patients being cut off,” Jim said.

Danny became an advocate against forced drug tapering before he died. Chronic pain patients who spoke with KHN pointed to his plight in calling for more access to opioid medications.

Even for people with prescriptions, it’s not always easy to get the drugs they need.

Pharmacy chains and drug wholesalers have settled lawsuits for billions of dollars over their alleged role in the opioid crisis. Some pharmacies have seen their opioid allocations limited or cut off, noted Ciaccia, with 3 Axis Advisors.

Rheba Smith, 61, of Atlanta, said that in December her pharmacy stopped filling her prescriptions for Percocet and MS Contin. She had taken those opioid medications for years to manage chronic pain after her iliac nerve was mistakenly cut during surgery, she said.

Smith said she visited nearly two dozen pharmacies in early January but could not find one that would fill her prescriptions. She finally found a local mail-order pharmacy that filled a one-month supply of Percocet. But now that drug and MS Contin are not available, the pharmacy told her.

“It has been a horrible three months. I have been in terrible pain,” Smith said.

Many patients fear a future of constant pain. Layman thinks about the lengths she’d go to in order to get medication.

“Would you be willing to buy drugs off the street? Would you be willing to go to an addiction clinic and try to get pain treatment there? What are you willing to do to stay alive?” she said. “That is what it comes down to.”

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

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This story can be republished for free (details).