Mariah Wilberg knows well the exhaustion and challenges of being on the front lines of a health epidemic. But when that epidemic is HIV/AIDS rather than COVID-19, it's a whole lot harder to get attention. Thanks to Wilberg's expertise as a public health professional, her engaging style as a motivational speaker, and a compelling backstory — she served prison time, battled substance abuse and has lived with HIV since 2006 — people are listening. After five years leading efforts to end HIV with the state of Minnesota, the 35-year-old Wisconsin transplant now living in St. Paul recently joined the Prevention Access Campaign, a global nonprofit dedicated to ending HIV and HIV stigma. She tells us more about her work, her background, and why she sees the end of HIV in the not-too-distant future.
Q: With our heads exploding due to COVID 24/7, most of us likely aren't current on HIV. Please catch us up. A: The HIV epidemic is ongoing in Minnesota, beginning with two separate HIV outbreaks recently: in Ramsey County in 2018, and in Duluth in 2019. These outbreaks disproportionately impacted people who inject drugs — a shift in who HIV typically affects. Many of them are also facing homelessness.
Q: As with COVID, we can't ignore the huge role that racial inequities play in this public health crisis.
A: HIV is, and always was, disproportionately impacting groups already marginalized. Due to racial inequities in housing, wealth, health care, incarceration rates and overdose deaths, 69% of all new HIV diagnoses in Minnesota in 2020 were among Black, Indigenous and other people of color. This is in a state where these communities make up only 17% of the entire population.
Q: How do we begin to fix this problem?
A: First, we need to beef up our systems of care. Our HIV systems are not well-equipped to support people who inject drugs or other marginalized groups. In addition, many HIV workers have been redirected to work with COVID patients. And we need to address the homelessness connection. For folks living outside, going to an HIV clinic is really not feasible if you have to stay with your stuff outside.
Q: So bringing care to them might be one solution? I believe you refer to this as a low-barrier service?
A: Yes, it's about going to someone living outside. Minnesota is working hard on this issue. One effective approach is the "housing-first" paradigm. This means we're going to find you housing and not first ask you to stop using drugs. Some HIV services require a lot of paperwork. This can be a barrier for folks who might not have an ID. Minnesota recently started pilots where you just have to show you are living with HIV to receive services. Then we help people work to become more housing-stable.
Q: One of your missions is to eliminate the stigma attached to HIV. Please say more about that.
A: There have always been value judgments just because of how HIV is transmitted — through sex and needles. As people living with HIV, we've been stigmatized for decades. It's ingrained in the media, even public health entities. But people in communities hardest hit by HIV don't have riskier behaviors. For example, young gay and bisexual Black men are less likely to engage in sexual behaviors that could lead to HIV than white gay and bisexual men. It's about the way our society is built that doesn't serve everyone equally.
Q: And not to bury the lede, but you have exciting news to share regarding successful HIV treatment.
A: This news goes back to 2008, when researchers in Switzerland discovered that people whose HIV is undetectable — after following daily HIV pill regimens — are unable to transmit HIV through sex. Now, over 1,000 health organizations in 105 countries want to make sure people with HIV know this. Our campaign is called "Undetectable = Untransmittable" (U=U) — which promotes the fact that people living with HIV who are on effective treatment cannot transmit HIV to their sex partners. This makes a difference in how people feel about themselves and how they approach their social, sexual and reproductive health. We're working across the country to integrate this happy news.
Q: Might you explain "undetectable"?
A: Lab results show that the treatment is so effective at suppressing HIV in your body that, when they do a blood test, the test is not able to detect any HIV. In other words, there is not enough virus for transmission through sex. Once you reach that state, your daily medications keep you there.
Q: This happy news is personal to you. Might you share a bit about your history?
A: I was diagnosed with HIV at 19, following several years of homelessness and survival sex. I felt a lot of shame, a lot of stigma. I had a partner who was abusing me. I went into denial. I stopped taking my medications for HIV. At 25, I was incarcerated and lab tests showed that my HIV was progressing to potentially fatal levels. I wanted to live. I got out of prison after a year and a half and became an HIV educator. I eventually attended Metro State University, from which I graduated with a master's degree in public administration. And here I am, helping people living with HIV across the country fight the stigma that nearly killed me.
Q: What's on the horizon for HIV treatment?
A: The current treatment is daily medications, including many options that are just one pill a day. More recently, a long-acting injectable form of medication has come onto the market. HIV doesn't have to be this taboo conversation. It's a chronic illness; people can expect to have a normal or near-normal life expectancy. You can have relationships and children who don't have HIV. It's really come a long way.