Last summer, Minnesota was thrust into the international spotlight due to the police murder of George Floyd and the outrage and grief that followed. But for Minnesotans who live with HIV or work daily in the fight to end HIV, there’s a quieter story that, though not unique to our state, is not getting sufficiently told: Due to racial inequities in housing, wealth, health care, incarceration rates, and overdose deaths, the HIV epidemic remains a problem here.
As someone living with HIV and working to end HIV in our state, I have an up-close lens on these issues.
Sixty-nine percent of all new HIV diagnoses in Minnesota in 2020 were among people of color—in a state where those communities make up only 17% of the entire population.
Especially alarming is that new HIV diagnoses among people who inject drugs in Minnesota have been rising the past several years. In 2014, out of 307 people newly diagnosed with HIV, only 16 (5%) reported injection drug use as an HIV risk factor. By 2019, the number had risen to 40 people (15%) out of the 275 new HIV diagnoses reported that year.
Minnesota does have syringe service programs (SSPs) throughout the state, but support for SSPs has always been insufficient, says Christine Jones, the STD, HIV, and TB section manager at the Minnesota Department of Health. “SSPs continually struggle to meet the needs of the communities they serve,” she says. “Syringes, supplies, naloxone [overdose prevention medication], even staff time. We continue to hear that they’re running out, it’s not enough, we need more.”
The uptick in HIV diagnoses among people who inject drugs led health officials, in February 2020, to declare an HIV outbreak in Hennepin County (which includes Minneapolis) and Ramsey County (which includes St. Paul). To date, 74 infections have been associated with the outbreak since December 2018—60 in Hennepin County and 14 in Ramsey County. A second HIV outbreak was declared in the Duluth, Minnesota, area in March 2021, where 16 new diagnoses have been identified since September 2019.
What’s Behind Minnesota’s Recent HIV Outbreaks?
Both the Minneapolis/St. Paul and Duluth outbreaks are largely impacting people who are already marginalized within our society: racial and ethnic minorities, people who inject drugs, people who are experiencing unsheltered homelessness (i.e., living outside), and people who do sex work.
Over the past several years, people experiencing unsheltered homelessness in Minneapolis/St. Paul have become more visible as they form communities of mutual aid—sometimes referred to as encampments—to take care of one another. The first large encampment went up in Minneapolis in fall 2018. Increased public health outreach and emergency response efforts to these communities have led to increased testing for HIV and other infectious diseases—which may be a reason for the uptick in numbers.
Sarah Jane Keaveny, a public health nurse who for more than a decade has been working with people experiencing homelessness in Hennepin County, suspects there have been upward trends and underreporting of HIV for years among people who inject drugs. “The outbreak is at the intersection of public health and emergency response among people who inject drugs who are homeless,” says Keaveny. “So, increasing outreach and screening is going to give us a big bubble.”
Recent HIV outbreaks are also related to local outbreaks of hepatitis A and hepatitis C, according to Jack Martin, the co-founder and executive director of Southside Harm Reduction Services in Minneapolis, which provides street outreach, delivering naloxone, syringes, and safer-use supplies to people who use drugs. “There are forces against people: encampment evictions, stigma for people living outside,” he says, all of which contribute to what he calls the current “overdose outbreak.”
Jonathan Hanft, Ryan White program coordinator and HIV outbreak incident commander for Hennepin County, agrees—and describes the state’s HIV outbreaks as being synergistic with its opioid epidemic.
“[The HIV outbreak] illuminates stark disparities among people who inject drugs and people who are homeless,” says Hanft. “It forces us to look at systemic barriers for access and ability to benefit from our HIV services. There is a lack of affordable, safe, stable housing for people who are homeless, and a lack of supportive services for people who inject drugs.”
Minnesota’s Existing Systems Don’t Work for Everyone
The increase in HIV among people who inject drugs has highlighted a disconnect, says Keaveny. Years of low rates of HIV in people who inject drugs means that the local HIV experts and systems of HIV care don’t have expertise or trust and relationships with people who use drugs, because they have not been interacting with them enough.
Keaveny calls for a paradigm shift: “People are seeking care and services. People are using syringe service programs, food supports, hygiene. People want to get tested; they want wound care. People want to know how to be safe and reduce risks.”
Marissa Bonnie, HIV testing and linkage coordinator for Southside Harm Reduction Services, adds, “There are gaps in what works in reality for folks using drugs, living outside, sex workers, people of color. There’s not a bridge between testing and treatment that really works for people. Meds get stolen, no ride to the appointment, or they’ve been stigmatized at the HIV clinic before.”
“Everything is interconnected,” says Martin. “People want to pursue HIV treatment, but they don’t have safe and stable housing, treatment, food, mental health. That gets underseen a lot.”
So how can we address these barriers? “It’s not complicated,” says Bonnie. “We keep saying mobile medicine. We keep saying low-barrier housing. Go to the basics, like making sure someone has a new syringe every time they inject.”
It’s clear that the needs of people impacted by the outbreak are much bigger than just managing their HIV. “People who inject drugs—like everyone else—are whole people,” says Jones. “We’re hearing back from the community that HIV isn’t always the priority.” Jones calls for more partnering around housing, food instability, and basic needs.
Core medical and support services funded through the Ryan White CARE Act can address some of those needs, but it has been a challenge to get folks impacted by the outbreak enrolled in these services. This is “partly because of strict funding requirements, including eligibility,” says Hanft. “Some of our services are too ‘high-barrier,’ particularly for people who are marginalized because of the dual stigma of HIV and drug use. If we can develop ‘low-barrier’ services that work for the most marginalized, we’re on a better path to meet the needs of all people with HIV.”
Creating new, low-barrier services requires collaboration. Hanft underscores the importance of working with new partners. “One of the things I’ve learned from this outbreak is how important partnerships are, not just in our Ryan White system of care and prevention, but critical partners that we haven’t worked with as much, like Southside Harm Reduction Services,” he says.
Minnesota’s Harm Reduction Resources Are Stretched Thin
Despite the importance of these services, resources in Minnesota are stretched thin at both the state health department and its partner agencies. Jones explains that the health department has not received any new funding to respond to the HIV outbreaks, and that the coronavirus pandemic has caused reallocation of resources, including staff time, at the health department and the organizations they fund.
Meanwhile, the need has only increased during the coronavirus pandemic, Bonnie says. In 2020, Southside Harm Reduction Services distributed over 1.2 million syringes in their community. Syringes, fentanyl test kits, safer smoking supplies, hygiene items, food items—the cost adds up quickly.
Struggling to keep up with demand, several SSPs report already spending their entire 2021 syringe budget by June. The program Jones oversees has redirected over $150,000 of existing funding to purchase almost 750,000 syringes, supplies, and testing and linkage incentives. Staff are doing emergency supply runs to syringe service programs across the state, including to those who don’t receive grant funding from Jones’ program, she says.
“We [the STD/HIV/TB Section—HIV prevention program] fund as many as we can,” she says, “but we know there are additional SSPs out there that we don’t have the capacity to fund.”
Even when new funding does reach the front lines, it brings new challenges. Recently, Ryan White funding was allocated to partially fund Keaveny’s position. She will now have to spend a considerable amount of her time helping her clients meet Ryan White eligibility criteria. This process, which is already onerous for any client, can seem insurmountable for people without identification or vital records, as is often the case for those experiencing homelessness.
Housing Is Crucial to Stemming Minnesota’s HIV Outbreak
One of the most critical resources to end the outbreak of HIV in Minnesota is safe, affordable, easy-to-access housing for those experiencing homelessness. But Keaveny points out that Hennepin County efforts to end homelessness focus on prioritizing folks who access the shelter system as a point of entry—leaving behind those who, for various reasons, live in outdoor encampments.
“Also,” says Keaveny, “the shelter system has sobriety requirements, and I’ve had a client kicked out for safer-use supplies that I gave him.” Additionally, the shelter system requires people without children to apply as single adults, which can break up partnerships and chosen families—the very people that one relies on for survival.
“People are in a family unit,” says Bonnie. “They want to stay together, and if they can’t, they might not pursue housing.” Frozen out by a system that doesn’t meet them where they’re at, all they have is each other—and their encampments.
“Needs are being met in the encampments that aren’t being met in other places,” says Martin. “People have a sense of safety.”
Another complicating factor: State or local health departments aren’t always notified ahead of time during “sweepings,” when people living in encampments are forcibly evicted by police. At a time when many housed people in the United States are eligible for mortgage forbearance or protected by eviction moratoriums, the most vulnerable have no such relief.
As Southside Harm Reduction wrote in its piece, “We Are Not Trash, Stop Sweeping Us”, breaking up encampments is chaotic and harmful to individual well-being and public health. People lose their belongings, forced to relocate with only what they can pack and carry in a matter of minutes. Vital documents, medications, harm reduction supplies, and naloxone can get left behind—as can relationships with outreach workers, health providers, and social service providers.
“It’s devastating,” says Bonnie. “People are back at square one: Don’t have a tent tonight, don’t have a house tonight. ‘My sleeping pad just got bulldozed.’”
Moving Forward to Curb Minnesota’s HIV Outbreaks
So how will Minnesota get back to a place where HIV infections are rare among people who inject drugs? Every person interviewed for this article mentioned the need to fight stigma: stigma against people living with HIV, stigma against people who use drugs, and stigma against people who live outside.
Agencies need to break out of their silos, partner more, and direct adequate resources to the response efforts, advocates said. Systems of care must adapt and meet the needs of people where they are at in low-barrier, culturally appropriate ways.
Advocates call for an overdose prevention site, or, at a minimum, a safe place for people who inject drugs to just “be.” At this time, neither Hennepin County nor the City of Minneapolis has an official stance on overdose prevention sites. What would it take to get there?
“It’s a long road,” says Hanft. “There’s a very large political aspect, associated with stigma around HIV and injection drug use. What’s needed is political will to take that step. For me, it’s about saving people’s lives.”
“I know this [HIV] outbreak is ‘new,’ but there is a continued under-serving of people who are exposed to HIV,” says Bonnie. “We don’t need to do this just because there’s an outbreak. We should be doing this because communities need care and resources.”