With effective biomedical interventions, but no cure, Michigan leaders believe the end of HIV could come as soon as a decade. The question: Is the infrastructure in place to remove barriers and finance the expensive but effective interventions to bring about an end to the crisis that’s 36 years old?
Reporter Todd Heywood spent the last month interviewing local, state and national experts about HIV prevention and treatment for this special report. This series is the result of over a dozen hours of interviews and the review of hundreds of pages of state and federal reports on HIV and hepatitis rates.
Katie Macomber sits in a chair in a conference room in Lansing at the Michigan Department of Health and Human Services in early November. She’s spent the last hour going over in detail the state’s efforts to address the HIV epidemic within its borders. She’s rattled off numbers and discussed complex social barriers. That’s part of her job as the director of the Division of HIV/STD programs for the state. Despite numerous obstacles, there is an air of optimism state health officials have not shared previously.
Asked if there is “a light at the end of the tunnel,” she enthusiastically replies, “Oh, yeah. Absolutely.”
She continues, excitedly discussing interactions at various national and regional conferences over the last year.
“Every conference I’ve been to, the reality that ending new HIV transmission is within ten years, probably less,” she said.
The numbers and science back that optimism. In October, the federal Centers for Disease Control for the first time announced that those with an undetectable viral load have “effectively no risk” of transmitting their virus to a sexual partner. In that same announcement, the federal agency noted that new HIV diagnoses for white men who have sex with men had dropped between 2011 and 2014, and in that same time period the rate of new infections among black MSM had stabilized. Those numbers, the agency said, were the effect of successful antiretroviral treatment.
Michigan has seen a stabilizing of new HIV infections during that period as well, and it continues to witness that slowing.
Bruce Richman, founder of the Prevention Access Campaign who has lead the U=U (Undetectable equals Uninfectious) messaging campaign, told aidsmap.com: “The CDC’s updated risk assessment is a historic shift in what it means to be a person living with HIV, and provides a powerful argument for universal access to treatment and care for both personal and public health reasons.”
That’s a potent reality in the fight against the epidemic. The U.S. and other developed countries are on the cusp of ending new transmissions. But to do that, it will require a concerted effort to address racial disparities which prevent access to medical care, treatment and prevention options. It will require an ongoing and sustained support for the economics of health care. And it will require a laser focus on empowering the communities most at risk.
It’s been 36 years since the U.S. Centers for Disease Control and Prevention issued the very first warning about a strange cluster of rare pneumonias in previously healthy gay men.
That cluster report would blossom into a worldwide epidemic, taking the lives of tens of thousands of Americans.
In 1985, when then Health and Human Service Secretary Margaret Heckler joined scientist Robert Gallo to announce the discovery of HIV, she assured the American public a vaccine was a few years away. She was, it turns out, being wildly optimistic. There is no vaccine today, and it would take 11 gruesome years before science was able to create a combination of drugs to fight the virus back and prevent it from killing the human host.
With the advent of combination antiretroviral treatment in 1996, there was a shift in the epidemic. People who were near death rebounded. Death was no longer the foregone conclusion of HIV infection and diagnosis. A Lazarus effect occurred and the once deadly epidemic transformed into a chronic but manageable health condition.
Data from the Michigan Department of Health and Human Services bears this out, showing that in 1995, the year before effective combination therapies were released, 913 people died from stage III HIV disease. At the end of the next year, with the new medications available, that number dropped by a third, to 629 deaths. It was the beginning of a trend. In 2016, the most recent year data is available, 106 Michiganders died of HIV Disease Stage III.
That effect may have also had an unintended consequence, says Curtis Lipscomb, executive director of LGBT Detroit. He represents a key demographic that has been left behind in both prevention efforts and treatment access in the U.S. — young black men who have sex with men. Lipscomb notes that many of these youth were not aware, or even born when effective treatment stemmed the tide of deaths.
“So they came up in an age where they don’t see the same terrors as I saw when I was young,”he said. “They don’t see the immediate consequences of infection and death. They didn’t see the rallying around being safe.”
He noted that back in the ‘80s and the early ‘90s, “we visually saw the symptoms of the tidal wave of infection.”
Those visual images included severe weight loss and physical blemishes like Kaposi’s Sarcoma lesions.
“You don’t see that wave now in common space,” he said.
There is a wave. In 2016, 46 percent of new infections were among black men. Twenty-six percent were among white men. Overall, 60 percent of the infections identified in 2016 were in men who have sex with men. A 2010 study of 20 year old men who have sex with men found that black MSM had a prevalence rate of 20 percent at age 20. By the time that cohort reaches 50, 70 percent of them are likely to be infected, that study found. White MSM in the same cohort who were age 20 had a prevalence rate of 10 percent, and if current transmission trends continued, half of them would be infected by the time they were age 50.
Despite these trends, Lipscomb said the optimism expressed by state health officials has not trickled down to his community.
The people who come to him for treatment want to know the basis for this optimism, Lipscomb said, and so would he.
Bambi Burnham, an early intervention specialist with the Lansing Area AIDS Network, agrees that there is a lack of education, information and outreach within and for the black community. She said doing so requires overcoming a significant number of social issues.
“When we’re talking about racial disparities and social determinants of health, all of those levels play into this part of HIV, the stigma,” she said. “The not wanting to or not being able to feel safe with family members or friends, to speak about who you are at your core. We’re educated on social determinants of health, but to actually see it play out in front of you is really sobering.”
Macomber concurred there are barriers for black MSM, from lack of insurance to food and housing insecurity. But she also said she sees historic and systematic racism playing a role in preventing black MSM specifically, and black Michiganders in general, from accessing medical care including HIV testing, treatment and prevention.
“I think we still increasingly seeing the results of institutional racism for black men, both in the ability to talk about sex with their providers or families, and in terms of feeling comfortable talking to doctors at all or accessing medical services,” she said.
She traced the historic racism back to Tuskegee, a series of experiments spanning 40 years in which black men were allowed to remain infected with syphilis while scientists monitored them. The experiment was funded by the federal Public Health Service. It ran from 1932 until 1972, according to the CDC. When it was revealed by the Associated Press in 1972, it caused a massive outcry in the US and led to a direct distrust of American health officials by the black community.
Macomber said health equity is one of the top five priorities for the department in general because it causes poor outcomes in all health related areas when it’s not addressed. But she acknowledged racism remains an issue in delivering services and addressing HIV.
Lipscomb said places where people of color, those most at risk for HIV infection, gather, remain woefully lagging in providing HIV prevention and education information.
“We just don’t see that information right now,” he said. He noted that many young MSM in his programs don’t know what PrEP is or its importance in ending the epidemic and protecting one’s own health. That, he said, has to be addressed by the community itself.
“We really need a community led response to this,” he said. “We really need the community to step up, to lead this. We don’t need leaders, we need the community.”
(This report first appeared in Between the Lines.)