CHARLESTON, http://w.va/. — More than three years have passed since federal health officials arrived in central Appalachia to assess an alarming outbreak of HIV spread mostly between people who inject opioids or methamphetamine.

Infectious disease experts from the Centers for Disease Control and Prevention made a list of recommendations following their visit, including one to launch syringe service programs to stop the spread at its source. But those who’ve spent years striving to protect people who use drugs from overdose and illness say the situation likely hasn’t improved, in part because of politicians who contend that such programs encourage illegal drug use.

Joe Solomon is a Charleston City Council member and co-director of SOAR WV, a group that works to address the health needs of people who use drugs. He’s proud of how his close-knit community has risen to this challenge but frustrated with the restraints on its efforts.

“You see a city and a county willing to get to work at a scale that’s bigger than ever before,” Solomon said, “but we still have one hand tied behind our back.”

The hand he references is easier access to clean syringes.

In April 2021, the CDC came to Charleston — the seat of Kanawha County and the state capital, tucked into the confluence of the Kanawha and Elk rivers — to investigate dozens of newly detected HIV infections. The CDC’s HIV intervention chief called it “the most concerning HIV outbreak in the United States” and warned that the number of reported diagnoses could be just “the tip of the iceberg.”

Now, despite attention and resources directed toward the outbreak, researchers and health workers say HIV continues to spread. In large part, they say, the outbreak lingers because of restrictions state and local policymakers have placed on syringe exchange efforts.

Research indicates that syringe service programs are associated with an estimated 50% reduction in HIV and hepatitis C, and the CDC issued recommendations to steer a response to the outbreak that emphasized the need for improved access to those services.

That advice has thus far gone unheeded by local officials.

In late 2015, the Kanawha-Charleston Health Department launched a syringe service program but shuttered it in 2018 under pressure, with then-Mayor Danny Jones calling it a “mini-mall for junkies and drug dealers.”

SOAR stepped in, hosting health fairs at which it distributed naloxone, an opioid overdose reversal drug; offered treatment and referrals; provided HIV testing; and exchanged clean syringes for used ones.

But in April 2021, the state legislature passed a bill limiting the number of syringes people could exchange and made it mandatory to present a West Virginia ID. The Charleston City Council subsequently added guidelines of its own, including requiring individual labeling of syringes.

As a result of these restrictions, SOAR ceased exchanging syringes. West Virginia Health Right now operates an exchange program in the city under the restrictions.

Robin Pollini is a West Virginia University epidemiologist who conducts community-based research on injection drug use. “Anyone I’ve talked to who’s used that program only used it once,” she said. “And the numbers they report to the state bear that out.”

A syringe exchange run by the health department in nearby Cabell County — home to Huntington, the state’s largest city after Charleston — isn’t so constrained. As Solomon notes, that program exchanges more than 200 syringes for every one exchanged in Kanawha.

A common complaint about syringe programs is that they result in discarded syringes in public spaces. Jan Rader, director of Huntington’s Mayor’s Office of Public Health and Drug Control Policy, is regularly out on the streets and said she seldom encounters discarded syringes, pointing out that it’s necessary to exchange a used syringe for a new one.

In August 2023, the Charleston City Council voted down a proposal from the Women’s Health Center of West Virginia to operate a syringe exchange in the city’s West Side community, with opponents expressing fears of an increase in drug use and crime.

Pollini said it’s difficult to estimate the number of people in West Virginia with HIV because there’s no coordinated strategy for testing; all efforts are localized.

“You would think that in a state that had the worst HIV outbreak in the country,” she said, “by this time we would have a statewide testing strategy.”

In addition to the testing SOAR conducted in 2021 at its health fairs, there was extensive testing during the CDC’s investigation. Since then, the reported number of HIV cases in Kanawha County has dropped, Pollini said, but it’s difficult to know if that’s the result of getting the problem under control or the result of limited testing in high-risk groups.

“My inclination is the latter,” she said, “because never in history has there been an outbreak of injection-related HIV among people who use drugs that was solved without expanding syringe services programs.”

“If you go out and look for infections,” Pollini said, “you will find them.”

Solomon and Pollini praised the ongoing outreach efforts — through riverside encampments, in abandoned houses, down county roads — of the Ryan White HIV/AIDS Program to test those at highest risk: people known to be injecting drugs.

“It’s miracle-level work,” Solomon said.

But Christine Teague, Ryan White Program director at the Charleston Area Medical Center, acknowledged it hasn’t been enough. In addition to HIV, her concerns include the high incidence of hepatitis C and endocarditis, a life-threatening inflammation of the lining of the heart’s chambers and valves, and the cost of hospital resources needed to address them.

“We’ve presented that data to the legislature,” she said, “that it’s not just HIV, it’s all these other lengthy hospital admissions that, essentially, Medicaid is paying for. And nothing seems to penetrate.”

Frank Annie is a researcher at CAMC specializing in cardiovascular diseases, a member of the Charleston City Council, and a proponent of syringe service programs. Research he co-authored found 462 cases of endocarditis in southern West Virginia associated with injection drug use, at a cost to federal, state, and private insurers of more than $17 million, of which less than $4 million was recovered.

Teague is further concerned for West Virginia’s rural counties, most of which don’t have a syringe service program.

Tasha Withrow, a harm reduction advocate in bordering rural Putnam County, said her sense is that HIV numbers aren’t alarmingly high there but said that, with little testing and heightened stigma in a rural community, it’s difficult to know.

In a January 2022 follow-up report, the CDC recommended increasing access to harm reduction services such as syringe service programs through expansion of mobile services, street outreach, and telehealth, using “patient-trusted” individuals, to improve the delivery of essential services to people who use drugs.

Teague would like every rural county to have a mobile unit, like the one operated by her organization, offering harm reduction supplies, medication, behavioral health care, counseling, referrals, and more. That’s an expensive undertaking. She suggested opioid settlement money through the West Virginia First Foundation could pay for it.

Pollini said she hopes state and local officials allow the experts to do their jobs.

“I would like to see them allow us to follow the science and operate these programs the way they’re supposed to be run, and in a broader geography,” she said. “Which means that it shouldn’t be a political decision; it should be a public health decision.”

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California’s Office of Health Care Affordability faces a herculean task in its plan to slow runaway health care spending.

The goal of the agency, established in 2022, is to make care more affordable and accessible while improving health outcomes, especially for the most disadvantaged state residents. That will require a sustained wrestling match with a sprawling, often dysfunctional health system and powerful industry players who have lots of experience fighting one another and the state.

Can the new agency get insurers, hospitals, and medical groups to collaborate on containing costs even as they jockey for position in the state’s $405 billion health care economy? Can the system be transformed so that financial rewards are tied more to providing quality care than to charging, often exorbitantly, for a seemingly limitless number of services and procedures?

The jury is out, and it could be for many years.

California is the ninth state — after Connecticut, Delaware, Massachusetts, Nevada, New Jersey, Oregon, Rhode Island, and Washington — to set annual health spending targets.

Massachusetts, which started annual spending targets in 2013, was the first state to do so. It’s the only one old enough to have a substantial pre-pandemic track record, and its results are mixed: The annual health spending increases were below the target in three of the first five years and dropped beneath the national average. But more recently, health spending has greatly increased.

In 2022, growth in health care expenditures exceeded Massachusetts’ target by a wide margin. The Health Policy Commission, the state agency established to oversee the spending control efforts, warned that “there are many alarming trends which, if unaddressed, will result in a health care system that is unaffordable.”

Neighboring Rhode Island, despite a preexisting policy of limiting hospital price increases, exceeded its overall health care spending growth target in 2019, the year it took effect. In 2020 and 2021, spending was largely skewed by the pandemic. In 2022, the spending increase came in at half the state’s target rate. Connecticut and Delaware, by contrast, both overshot their 2022 targets.

It’s all a work in progress, and California’s agency will, to some extent, be playing it by ear in the face of state policies and demographic realities that require more spending on health care.

And it will inevitably face pushback from the industry as it confronts unreasonably high prices, unnecessary medical treatments, overuse of high-cost care, administrative waste, and the inflationary concentration of a growing number of hospitals in a small number of hands.

“If you’re telling an industry we need to slow down spending growth, you’re telling them we need to slow down your revenue growth,” says Michael Bailit, president of Bailit Health, a Massachusetts-based consulting group, who has consulted for various states, including California. “And maybe that’s going to be heard as ‘we have to restrain your margins.’ These are very difficult conversations.”

Some of California’s most significant health care sectors have voiced disagreement with the fledgling affordability agency, even as they avoid overtly opposing its goals.

In April, when the affordability office was considering an annual per capita spending growth target of 3%, the California Hospital Association sent it a letter saying hospitals “stand ready to work with” the agency. But the proposed number was far too low, the association argued, because it failed to account for California’s aging population, new investments in Medi-Cal, and other cost pressures.

The hospital group suggested a spending increase target averaging 5.3% over five years, 2025-29. That’s slightly higher than the 5.2% average annual increase in per capita health spending over the five years from 2015 to 2020.

Five days after the hospital association sent its letter, the affordability board approved a slightly less aggressive target that starts at 3.5% in 2025 and drops to 3% by 2029. Carmela Coyle, the association’s chief executive, said in a statement that the board’s decision still failed to account for an aging population, the growing need for mental health and addiction treatment, and a labor shortage.

The California Medical Association, which represents the state’s doctors, expressed similar concerns. The new phased-in target, it said, was “less unreasonable” than the original plan, but the group would “continue to advocate against an artificially low spending target that will have real-life negative impacts on patient access and quality of care.”

But let’s give the state some credit here. The mission on which it is embarking is very ambitious, and it’s hard to argue with the motivation behind it: to interject some financial reason and provide relief for millions of Californians who forgo needed medical care or nix other important household expenses to afford it.

Sushmita Morris, a 38-year-old Pasadena resident, was shocked by a bill she received for an outpatient procedure last July at the University of Southern California’s Keck Hospital, following a miscarriage. The procedure lasted all of 30 minutes, Morris says, and when she received a bill from the doctor for slightly over $700, she paid it. But then a bill from the hospital arrived, totaling nearly $9,000, and her share was over $4,600.

Morris called the Keck billing office multiple times asking for an itemization of the charges but got nowhere. “I got a robotic answer, ‘You have a high-deductible plan,’” she says. “But I should still receive a bill within reason for what was done.” She has refused to pay that bill and expects to hear soon from a collection agency.

The road to more affordable health care will be long and chock-full of big challenges and unforeseen events that could alter the landscape and require considerable flexibility.

Some flexibility is built in. For one thing, the state cap on spending increases may not apply to health care institutions, industry segments, or geographic regions that can show their circumstances justify higher spending — for example, older, sicker patients or sharp increases in the cost of labor.

For those that exceed the limit without such justification, the first step will be a performance improvement plan. If that doesn’t work, at some point — yet to be determined — the affordability office can levy financial penalties up to the full amount by which an organization exceeds the target. But that is unlikely to happen until at least 2030, given the time lag of data collection, followed by conversations with those who exceed the target, and potential improvement plans.

In California, officials, consumer advocates, and health care experts say engagement among all the players, informed by robust and institution-specific data on cost trends, will yield greater transparency and, ultimately, accountability.

Richard Kronick, a public health professor at the University of California-San Diego and a member of the affordability board, notes there is scant public data about cost trends at specific health care institutions. However, “we will know that in the future,” he says, “and I think that knowing it and having that information in the public will put some pressure on those organizations.”

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

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

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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.

Subscribe to KFF Health News’ free Morning Briefing.