DULUTH — Overshadowed by the COVID-19 pandemic recovery, an HIV outbreak centered in Duluth is already four months old, and the mood on the ground is tense.
Rapid HIV testing and clean needles — keys to containing the outbreak — are just beginning to show up at needed capacities in the city, and sources worry that apathy may prevent the response from being taken as seriously as it needs to be.
“I’m so angry I can’t stand it,” said Sue Purchase, director of Harm Reduction Sisters in Duluth, about the state's response so far. “It was preventable, and they watched the statistics climb and did nothing.”
The Minnesota Department of Health announced the HIV outbreak in March, starting with 13 cases within 30 miles of Duluth. The number has since risen to 17, with 16 cases in St. Louis County and one in Lake County.
The bevy of cases recorded during the outbreak connect to ones first diagnosed in September 2019. The virus normally would show up in zero to five people a year in the area concentrated around Duluth.
But a half-dozen sources interviewed for this report tell a chilling story. They describe cases first showing up in the population of people using injection drugs, and then spreading to include the sexual partners of some of those people.
And while the outbreak is concentrated in people experiencing homelessness and men who have sex with men, it’s not been limited to those groups. Workaday folks who use injectables, and spouses who aren't aware of their partner's drug use or promiscuity, are at increased risk of acquiring HIV during the outbreak.
“People who inject cut across many different types of cloth,” said Dr. Harmony Tyner, a physician at St. Luke’s Infectious Disease Associates. “This has the potential to become a fairly big problem.”
People who exchange sex for housing and other needs are also at high risk during the current outbreak.
HIV is spread through intercourse or contact with contaminated blood. And sharing needles, one of the riskiest behaviors associated with HIV transmission, is rampant locally, with desperate people sometimes using and sharing the same bacteria-laden needle for weeks at a time, sources said. Some people resort to sharpening needle points on matchbooks.
Purchase meets people on their terms, in the places they go. She’s distributing 45,000 clean needles per month out of her Honda hatchback to people across 10 counties surrounding Duluth. It may seem like a lot, but it’s only a portion of what she’d done in the past as needle exchanges — turning in contaminated syringes for new ones — have suffered during the COVID-19 pandemic.
“I can’t meet the need,” Purchase said. “I’m down maybe half from what it was when I was doing 80,000 on average per month.”
Mary McCarthy is executive director for the state’s Rural Aids Action Network. It has an office in downtown Duluth that offers needle exchanges and, soon, rapid HIV testing. She and others suggested the outbreak runs deeper and features more cases than are currently known.
“It’s a great model to meet people where they’re at, but the challenge is we probably haven’t found everybody,” McCarthy said. “It’s a lot of geography to cover.”
A Minnesota health department official said the state is on top of the outbreak, and that she empathized with front-line workers who, she explained, often see things in real time in a way that can make it seem as if the response has been slow.
“One of our concerns is that when we see this number of cases in a concentrated area, it can spread pretty quickly,” said Christine Jones, manager of STD/HIV/TB programs at the Minnesota Department of Health. “To amp up our HIV response, we are getting a lot more training for people to do more testing, and a lot of harm-reduction supplies out there.”
'Young people are not aware'
Because rapid tests are only beginning to show up on the streets and in advocacy agency storefronts, the people who’ve tested positive locally have done so in hospital settings.
Left untreated, HIV over time can profoundly suppress an individual’s immune system. But it’s no longer the death sentence it was when HIV arrived in the early 1980s, first plaguing the gay community. There exists now powerful and effective medications which can make the viral load undetectable, and foster normal lives in those carrying HIV.
“The vast majority of people I take care of (with HIV) are elderly individuals who are well-controlled,” Tyner, of St. Luke’s, said. “But one of the challenges of this particular outbreak is that the lives of the people involved tend to be chaotic, and in order to be treated effectively they need medication every single day.”
HIV can become resistant to medication when not taken as prescribed, she added.
There’s concern some HIV carriers won’t find out about their illness, and continue to transmit the disease. Statistically, one in five people who are HIV positive don't know it, Tyner said. Acquiring HIV can elicit flu-like symptoms, but after that, it can be years before a person’s health deteriorates.
Because of the outbreak, it’s recommended people in high-risk groups be tested now for HIV, and continue to do so regularly.
“Once a person knows, they tend to modify their behaviors,” Tyner said. "Only a sociopath doesn't."
One of the biggest obstacles being confronted during the outbreak is a general lack of knowledge about HIV and other sexually transmitted diseases. Earlier this week, the state health department announced a syphilis outbreak in Duluth, with cases in St. Louis County rising from 12 in 2019, to 28 in 2020, and 24 so far in 2021. Syphilis is spread through sexual contact.
“Concern about HIV has waned a bit,” McCarthy, of the Rural Aids Action Network, said. “I don’t know if it’s apathy, or a lack of understanding overall.”
Kathy Hermes is the HIV educator at the Center for Changing Lives in Duluth, serving 13- to 24-year-olds experiencing homelessness. She agrees awareness is low.
“Young people in general are not aware, just like adults are not aware,” Hermes said. “When I make my pitch about free testing, there's not a lot of interest until I say I'll give them a $20 gift card."
To help with the response in Duluth, the Minneapolis-based Indigenous Peoples Task Force is employing its expertise. So far, there is no evidence the local Indigenous population has been disproportionately impacted by the outbreak, said Calvin Hylton, HIV programs manager for the group.
He pointed to the COVID-19 pandemic for creating the environment that allowed HIV to flourish.
“Resources are often slow to come in a normal environment,” Hylton said. “Then you add on top of that the emergence of a worldwide pandemic, which occupied everyone’s attention.”
While there have been no cases yet among the young adults served by the Center for Changing Lives, the specter of HIV looms over its mission.
“It makes me sweat to think about the time it does happen,” Hermes said. “COVID has exacerbated this on a number of levels. People are quite isolated both informationally and in terms of being one-on-one with each other."
'Tip of the iceberg'
Despite frustrations with the collective response to the outbreak, things are coming together.
In Duluth, the state has convened what it’s calling the HOPE group, or HIV Outbreak Partner Engagement, that brings agencies combating HIV to the same table. The group met online this week to further strategize its response.
The state’s HIV manager, Jones, reported $150,000 in harm-reduction supplies, including clean needles and HIV test kits, have been ordered for outbreaks in Duluth and the Twin Cities, where HIV outbreaks in Hennepin and Ramsey counties were announced last year.
The rapid testing kits come as either a saliva swab or finger prick, and the training to administer the tests includes lessons on how to compassionately inform someone who tests positive for HIV.
“First and foremost, we get them connected to care right away,” Jones said. “We help them notify their partners that they’ve been exposed, and we’ll do that anonymously.”
In notifying partners and collecting data from the individual, the state is able to better understand the spread of the disease. As of now, there’s no connection between the Twin Cities and Duluth outbreaks. But at a time when HIV cases are dropping overall in the state, the outbreaks illustrate how turning so much attention, even justifiably, to the COVID-19 response had consequences.
“COVID was our main priority,” St. Louis County disease intervention specialist Rillis Eklund said. “We did get off to a slower start than most people would have wanted with the HIV outbreak.”
The county is in the process of ordering large syringe disposal boxes to deploy throughout the community. The containers will look more like postal mailboxes than the smaller units found in public bathrooms.
And the state has issued a $168,000 grant over 18 months to the Harm Reduction Sisters, so it can expand its capacity to meet folks where they’re at.
“I tell every single person I meet there’s an outbreak,” Purchase said. “It’s dire. It’s just the tip of the iceberg.”
A federal law prohibits federal spending on syringes used in needle exchanges. It's indicative of the controversial nature of harm-reduction work. While it's aimed at lessening the impact of high-risk activities, many people misjudge it and blame the victims.
"People are so terrified," Purchase said. "They're already facing incarceration, alienation and isolation in so many ways."
At St. Luke’s, Tyner noted her ability to prescribe pre-exposure prophylaxis, or PrEP, a harm-reduction medication that, taken daily, can prevent HIV from showing up in people with high-risk behaviors.
“If I know someone or their partner is injecting drugs and they’re willing and able to take it, I will 100% prescribe it,” Tyner said.
HIV medications are expensive, and the sticker shock can be a barrier to treatment. But the doctor said there are ways to get the drugs for free. She encouraged anyone concerned about their HIV status to seek attention at the hospital.
“We need folks to be tested,” Tyner said. “If you think you might be at risk, we can help you.”