Nikki Butler used to go through a hundred syringes every few days back when she was using drugs.
She lived half an hour from the nearest syringe exchange, and because she didn’t always have enough clean needles, she repeatedly contracted infections, including hepatitis C, and developed abscesses and scar tissue that is still visible nearly nine years since she entered recovery, she said.
“Everybody in the house would share, because nobody could get fresh syringes,” Butler said.
“I almost died three times,” she added — not just from overdoses, but also from blood infections when she didn’t have access to safe supplies.
Butler is now the director of health and peer services for an organization that is pushing for Maine to loosen its syringe access policy so that people using injection drugs won’t feel like they need to reuse or share syringes like she did.
Research shows that unlimited syringe distribution, typically referred to as needs-based distribution, is best practice for preventing HIV and other infections. But needle exchanges can be politically unpopular, and some worry that distributing more syringes could lead to backlash from municipalities.
The Maine Center for Disease Control and Prevention has emphasized needle exchange services as a key part of its strategy to combat an HIV outbreak that was identified in the Bangor area in 2023 and is likely affecting communities across the state. Still, the agency has expressed no desire to change its semi-restrictive needle exchange model, despite calls from providers to loosen the rules in hopes of preventing HIV transmission.
Current Maine CDC policy mandates a “one-to-one plus” model. Syringe service programs can only give out as many clean needles as someone turns in used ones — unless the person doesn’t have any to exchange, in which case they can get up to 100 new ones.
This rule “provides significant flexibility,” Maine CDC spokesperson Lindsay Hammes said in a statement to the Bangor Daily News. She wouldn’t answer specific questions about whether Maine CDC plans to adopt needs-based distribution, and why or why not, in her statement to the BDN.
Some advocates say the current policy isn’t meeting demand and may be exacerbating Penobscot County’s HIV outbreak.
“This policy does not make any sense,” said Anna McConnell, the executive director of Maine Access Points, the nonprofit where Butler works. “There’s just a huge disconnect between where we are right now and where we could be if the CDC was looking into the best practice and willing to implement a needs-based model.”
McConnell said she believes the policy is in place because Maine CDC feels pressure from municipalities to keep the more restrictive exchange policy. “They don’t want to take a stand,” she said. “And it’s really unfortunate that now people are going to get really sick, because it is universally understood that needs-based access is the best practice.”
Despite evidence of their effectiveness, syringe exchange programs can be politically unpopular, and many communities across the country are distancing themselves from harm reduction strategies — in line with the Trump administration, which said these programs “facilitate illegal drug use and its attendant harm” in an executive order last year.
Some believe that loosening syringe service restrictions might backfire, causing local governments to impose even harsher limits on harm reduction organizations.
“The best strategy is needs-based distribution,” Jennifer Gunderman, Bangor’s public health and community services director, said. At the same time, she added, “policy needs to balance the evidence and the community’s overall acceptance of the intervention.”
Needs-based syringe distribution is backed by the U.S. Centers for Disease Control and Prevention, which cites studies linking the model with a more than 90 percent lower risk of HIV.
Data published this year by Temple University’s Center for Public Health Law Research shows that most states with syringe service programs do not cap the number of needles a participant can receive at a time, while only two states require a fully one-to-one exchange. Maine and Connecticut are the only states in New England that set a maximum number of needles someone can get at a syringe service program.
One of several such programs in the state, Maine Access Points provides a range of harm reduction services, including syringe exchange, overdose prevention, drug checking, peer support, HIV and hepatitis C testing and referrals to other health services, with a particular focus on rural Maine, according to McConnell. It serves more than 1,000 people per year through its programs in Machias, Calais, Sanford, Rumford and Biddeford.
Nearly everyone who visits the nonprofits’ syringe services says they need more than 100 new needles, McConnell said.
The number of clean needles someone needs depends on what substance they’re using, how often they inject and how often they have access to transportation, according to Mikki Rice, the organization’s director of overdose prevention.
Some people who use stimulants like cocaine, which has a relatively short half-life, might inject every 30 or 45 minutes, roughly 20 times per day, McConnell said.
If these Mainers can’t get enough clean needles, they might share syringes with others or reuse their own — both practices that can have serious health consequences.
The nonprofit regularly gets calls from people who, for weeks at a time, “are just reusing these old dull syringes over and over again until they are able to do this rigmarole of putting them in the car and transporting them and going through the whole exchange process,” McConnell said.
Butler said that when she was using, she built up so much scar tissue that if she tried to reuse a syringe, it would break during the injection attempt.
Although reusing your own needles doesn’t carry the HIV transmission risk that syringe sharing poses, it still picks up external bacteria from your skin that can get into your bloodstream and cause other infections, said McConnell, who is also a nurse practitioner. Using increasingly dull needles can also cause abscesses, inflammation and infections that can spread to your whole body and lead to life-threatening conditions like endocarditis.
“All of that could have been prevented by someone just having a sterile syringe,” McConnell said.
Access to clean needles is especially important amid the HIV outbreak, McConnell said. As of Thursday, 38 cases have been detected as part of the outbreak in Penobscot County, and another set of five cases was recently identified in Cumberland County. Both sets of cases are primarily affecting people who inject drugs, and experts agree there are likely many more cases that haven’t yet been diagnosed.
“We do have people that still call us from all over the state, and definitely increasingly from Bangor over the last couple of years, that are saying, I’m desperate, I need supplies, I don’t have anything, I’m around people that are HIV positive,” McConnell said.
She and her colleagues believe Maine’s syringe access policy has worsened the outbreak, which is why they sent a petition with nearly 300 signatures to Maine CDC on Tuesday, calling on the agency to implement a fully needs-based model.
Maine’s needle exchange law designates the state CDC to set rules around how many syringes providers can give out.
Now is the time to change the rules, the petition argues, because the state is currently in the process of editing them to adjust for a new provision under state law allowing syringe providers to have mobile sites and delivery services within the municipalities where they operate.
Maine has implemented needs-based syringe distribution before, when Gov. Janet Mills issued an executive order soon after the COVID-19 pandemic began that suspended a previous one-to-one exchange rule and temporarily allowed unlimited distribution.
Then in 2022, Maine CDC implemented the current one-for-one plus model, which its director, Puthiery Va, described as a “middle ground” between needs-based and one-to-one distribution in testimony to the state legislature’s health and human services committee last year. In that testimony, Va acknowledged that a needs-based model is “the recognized best practice.”
A bipartisan group of lawmakers rejected an attempt last year to revert back to the pre-pandemic one-for-one model.
While the HIV outbreak adds a layer of urgency to the debate around Maine’s syringe access policy, acting too quickly could lead to backlash and communities shutting down their syringe service programs altogether, according to Gunderman, the Bangor public health director.
Cities and towns often cite frustration with syringe litter when deciding to shut down a syringe provider, as in the case of Sanford, which recently instituted a one-year pause on all needle exchange services.
But numerous studies have found that restrictions on syringe services do not reduce syringe litter; in fact, some have found that syringe litter is more common in cities without needle exchange programs. Instead of imposing limitations on providers, researchers have suggested offering needle disposal boxes, pharmacy takeback programs and hotlines where syringe litter can be reported to trained cleanup staff.
Even if the Maine CDC changes course, local governments would still be able to impose their own restrictions.
For this reason, Needlepoint Sanctuary Executive Director Willie Hurley said that while he supports needs-based distribution, he doesn’t believe a rule change from the CDC alone would solve access issues. The agency should also ban municipalities from restricting syringe service programs, he said. Needlepoint Sanctuary is one of two syringe service providers in Bangor.
“You could pass needs-based distribution and a local municipality could still ban certain services,” he said. “And then it doesn’t matter.”