HIV and drug use flourished during the pandemic, fueled in part by extended isolation and economic fallout.
Relapses were commonplace and services harder to access. Now, as the U.S. emerges from the worst of its outbreak, it's grappling with pockets of HIV linked to sharing needles.
There's a tried-and-true response to such outbreaks: syringe exchange programs have operated in the United States since the 1980s and are backed by decades of scientific evidence showing they reduce the transmission of HIV.
But improbably, instead of investing in them, states and municipalities are increasingly making them harder, in some cases illegal, to operate.
Experts agree: syringe programs work
Syringe service programs, commonly called needle exchanges, distribute sterile needles and other supplies to people who inject drugs in order keep them and the larger community safe. Since communities differ in size and geography and have unique needs, resources and laws, there isn't one way to operate an exchange. But there are best practices, according to the Centers for Disease Control and Prevention (CDC), which recommends that programs offer comprehensive services to people who use drugs. Those services can include education and counseling; providing clients with condoms, naloxone to combat overdoses, HIV and STD screenings; and links to the health care system, including addiction, HIV and mental health services.
The programs have existed in the U.S. for decades, and even longer in other parts of the world. More importantly they work. "Nearly 30 years of research has shown that comprehensive SSPs are safe, effective, and cost-saving, do not increase illegal drug use or crime, and play an important role in reducing the transmission of viral hepatitis, HIV and other infections," according to the CDC.
In addition to research showing the people who start using a syringe service program are five times more likely to enter drug treatment and three times more likely to stop using drugs than people who don't use one, the programs benefit the wider community. A series of studies, for instance, found that New York's needle exchange program decreased HIV prevalence from 50% to 17% during the period from 1992 to 2002.
Syringe programs facilitate safe needle disposal, which protects first responders and the public from contaminated needles, the CDC says. Since treating HIV is expensive, with an estimated lifetime price tag approaching $450,000, preventing new cases drives down health care costs and saves taxpayers money.
Despite proven benefits and endorsements from the CDC, World Health Organization and American Medical Association, many communities oppose syringe programs. Some say they increase needle litter, putting the public at risk. Others claim programs drive up crime or enable drug use, but those fears aren't backed by strong evidence. Then there's what people don't explicitly mention, experts say. Stigma against those who use drugs runs strong. The public doesn't want to witness drug use or have a front row view of the fallen.
Indiana's 'canary in the coal mine'
There were warning signs when Dr. William Cooke opened his practice in Austin, Indiana, in 2004. There hadn't been a community physician in the rural city of 4,100 in three decades and the patients Cooke saw were worryingly ill. They had abscesses, infective endocarditis (infection of the heart's lining or valves) and sepsis. Some had contracted hepatitis C, which is spread the same way as HIV.
"What I found waiting for me there was pretty scary," said Cooke, whose book about the experience, "Canary in the Coal Mine," was published this month. "We knew it was coming."
That premonition proved fateful. In 2015, Austin, where Scott County is located, became the site of the worst drug-fueled HIV outbreak in U.S. history, with 235 infections, most occurring in the first year. Then-Gov. Mike Pence opposed syringe service programs on religious and moral grounds, but tabled those views in the face of a medical crisis, approving the state's first syringe exchange program.
"I will tell you that I do not support needle exchange as anti-drug policy," Pence said at the time, "But this is a public health emergency."
Over the six years that followed, new infections plummeted. In 2020, there was only one new HIV case in the county.
West Virginia follows suit and falters
The lessons from Scott County resonated with public health officials elsewhere. In 2016, Charleston, West Virginia's health department opened a syringe program with the express purpose of preventing a Scott County-style outbreak.
The program's success proved to be its downfall. The busy and visible exchange drew the ire of the mayor, who called it a "mini-mall for junkies and drug dealers" on his daily radio show. A local TV news outlet characterized the exchange as a safety hazard in a series entitled "Needles Everywhere." The table was set.
Despite Kanawha County (including Charleston) making the CDC's warning list of the 220 counties most at risk for an HIV outbreak, public backlash and pressure from local officials forced the exchange to close in 2018.
Now the county is facing an HIV outbreak, with 35 new HIV cases last year and a warning from Dr. Demetre Daskalakis, the CDC’s chief of HIV prevention, who called Kanawha County's outbreak "the most concerning in the United States," earlier this year.
"It is possible the current case count represents the tip of the iceberg," Daskalakis added. "There are likely many more undiagnosed cases in the community. We are concerned that transmission is ongoing and that the number of people with HIV will continue to increase unless urgent action is taken."
'Access to sterile syringes'
The CDC has been conducting an on-the-ground Epi-Aid investigation in Kanawha County. Although final recommendations from the investigation won't be available until August, preliminary results from the investigation point to "low access to sterile syringes and injections equipment" as one of the gaps and barriers associated with the HIV outbreak.
Given that preliminary finding, it stands to reason that strengthening syringe services will be one of the recommendations the CDC ultimately makes.
Joe Solomon, who cofounded the nonprofit group SOAR to fill the gap in syringe access left by Charleston's shuttered syringe exchange, hopes the CDC will go a step further and use its influence to pressure the city to declare the dual crises of HIV and drug overdoses a public health emergency. In late June, SOAR volunteers donned red t-shirts and laid their bodies in the shape of the words "HIV SOS" in a message to Mayor Amy Goodwin, urging her to declare a public health emergency.
While a declaration would be largely symbolic, "anything to help further the cause without politicizing it would be good for patient care," said Sherri Young, health officer at the Kanawha-Charleston Health Department. "Politics has been hampering our ability to address these issues and get the community to understand what's going on."
In neighboring Cabell County, West Virginia, which called in the CDC in 2019 for help fighting its own HIV outbreak, the agency made a slew of thoughtful recommendations, according to Dr. Michael Kilkenny, head of the Cabell-Huntington Health Department.
The recommendations were extensive, Kilkenny said, including scaling up HIV testing, health care access and housing for the homeless, as well as improving addiction and behavioral health services and educating doctors about offering PrEP to people who use drugs.
The health department implemented as many of the recommendations as they were able to, but one, strengthening the syringe service program, was a nonstarter in the community. And while Kilkenny is proud of the collective strides the county made to stem the outbreak, they fell short of their goal of eradicating it altogether.
"As far as we followed their guidance, we were successful," he said of the CDC. "If you go halfway with it, you're going to get halfway results."
CDC best practice vs. 'bad actors'
In April, West Virginia legislators donned face masks to gather in person and vote on a bill to restrict syringe service programs in the state.
Republican Sen. Michael Maroney argued that requiring programs to practice "one-to-one exchange" (meaning you have to trade in a used syringe to get a sterile one) would maximize program's benefit to the community while reducing quality-of-life issues in the community, including syringe litter.
"There's a few bad actors," Maroney, who is a physician, said of the state's exchanges. "They are ruining them for everybody."
Per the CDC, "restrictive laws and policies for syringe allocation are strong barriers to sterile syringe access." The CDC refers to one-to-one exchange as the "most restrictive" syringe distribution policy.
Republican Sen. Tom Takubo, a critical care doctor, said that the bill's provision to track supplies from syringe programs to see whether they contribute to needle litter was a necessary compromise between community concerns and those in public health. The bill could have been more restrictive, Takubo said, but he worked to water it down to do as little harm as possible. "As a physician, I felt I played the cards in front of me."
But other legislators argued that the restrictions would make it hard for needle exchanges, which operate on tight budgets, to stay in operation, especially since the bill didn't include any funding for its additional requirements.
Democratic Sen. Ron Stollings, who is also a doctor, pushed back against what he called a "very, very restrictive" bill. "We're pouring gasoline on a fire with this bill right here," Stollings said. "When we talk two or three years down the road, I'm going to say 'I told you so.'"
The bill passed the Senate and House easily and is slated to go into effect in July. Charleston's City Council passed a similar bill mandating one-to-one exchange in April.
"It is now a crime to adhere to CDC best practice for syringe access and HIV prevention," said Robin Pollini, a substance use and infectious disease epidemiologist and associate professor at West Virginia University.
The new laws requiring one-to-one syringe exchange would make it a misdemeanor to give out sterile needles without clients trading in used syringes first. That too is in flux. On Monday, weeks before the state bill was to go into effect, a judge in West Virginia granted the ACLU of West Virginia a temporary restraining order against it. The ACLU's lawsuit, which claims the bill is constitutionally flawed and could "significantly worsen the nation’s worst HIV outbreak," will go to court in July.
"What is the responsibility of local or state government officials?" Pollini asked. "Is it to do what people want or is it to do what best promotes the health and safety of the community?"
Cracking down on syringe exchanges
In jurisdictions across the country, officials are choosing the former. Atlantic City, New Jersey; Asheville, North Carolina and Eureka, California have all made it harder for syringe exchanges to operate in their cities. Of the 220 counties that the CDC deemed most vulnerable to an HIV outbreak, fewer than a third have a working syringe exchange, a Kaiser Health News analysis found.
During the conversations in West Virginia, Pollini said, legislators conflated drug use with syringe programs. "There's an idea that if you don't have these programs, people who use drugs will go away and the drug problem will go away," Pollini said. In reality, syringe programs are a reaction to injection drug use, not the other way around.
Even Scott County, the poster child for using syringe services to halt its infamous outbreak, voted to end the needle exchange this year on the grounds that it enables drug use.
"I know people that are alcoholics, and I don't buy him a bottle of whiskey," Mike Jones, president of the Scott County commissioners said prior to the vote. "I have a hard time handing a needle to somebody that I know they're going to hurt theirself with."
Cooke, who can attest to the program's success over the past six years, is beside himself.
"It's instinctual to think these are bad, scary people who we don't want in our community," said Cooke, who speaks from experience.
When Cooke, who was brought up in an Evangelical church, first began treating patients who used drugs in Scott County, his instinct was "put up my hand, say no and basically kick people out of my practice," he said.
In the beginning, he did. But over time, his outlook changed. He got to know patients as people and not just strangers who used drugs. He witnessed them die from preventable disease and lack of access to routine medical care. He saw patients take measures of control over their health by using sterile needles instead of sharing them and by getting treatment for HIV.
"Most people are willing to make healthy choices when they have access to those choices in a way that feels safe to them," he said.
"Elected officials are ignoring public health experts and the work that we're doing on the ground, and making a terrible decision," Cooke added. "They're unwilling to see the evidence through their bias against people who use drugs."