you’re hiv positive. now what?
How a community workshop in New York City is changing the way we think about treating HIV/AIDS.
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If you could count all of the microbes in your body, what percentage would be human and what percentage would not?
Mark Milano, a community educator with the New York-based AIDS foundation ACRIA, often asks his clients this question when they first come to see him, usually not long after first being diagnosed with HIV. The answer is that 95% of our bodies are made up of non-human lifeforms - viruses, bacteria and protozoa. "The human body is a host for millions of pathogens," Milano tells me. "People with HIV just have one more. We are no different from anybody else."
But, he says, there are still very few standards in the treatment of HIV or in the availability of reliable information. And Milano believes that the medical care provided by doctors is not enough to effectively treat individuals living with HIV—or to stem the spread of the epidemic.
This is why Milano and ACRIA advocate so strongly for community-based programs that allow educators to take the time to talk with people living with HIV. This isn't a widespread approach, or a new one. "If a young person today with HIV wants information, where do they go?" asks Milano me during a class. "The internet. Right. And we all know how reliable the internet is. We used to have community workshops, face-to-face. No one does that anymore." Apart from ACRIA.
Once a month since May 2014, Milano has been leading a community-based workshop at the ACRIA's headquarters, in an art-filled office just west of Times Square. The series of six classes is called "Living with HIV," (or, colloquially, "HIV 101") and its goal - which Milano believes no other organization meets - is to answer the question, "I've just tested positive. Now what?"
The sessions cover topics like transmission and prevention, understanding lab results and the benefits and side effects of available medications. Milano, who was diagnosed when he was 25 and has been living with the disease for 34 years, provides advice from his own experience, dismantles jargon and, most importantly, stamps out misinformation.
In March of this year, Governor Andrew Cuomo unveiled the 2015 Blueprint, a plan to end the AIDS epidemic in New York State. It aims to reduce the annual number of new HIV infections in the state from 3,000 to 750 by 2020, by linking people to effective health care and raising the rate of viral suppression among people living with AIDS to over 80%. (Viral suppression is the point at which the levels of virus in the body are so low that they're undetectable and can no longer be transmitted.) But, says Milano, "even if we diagnose every person with HIV in the state and get them into care, we are not going to reach that number. To get people virally suppressed, you have to spend the time to destroy the myths."
The most common myths he hears from people in his ACRIA workshop are: "HIV meds are deadlier than the virus." "There is a cure for AIDS that is being withheld by the drug companies and instead they are giving us expensive, toxic medication." "Magic Johnson has been cured of AIDS and he has access to secret drugs the rest of us don't have."
There is also the classic "the government created AIDS in 1970." As someone who was active with ACT UP during the early stages of the AIDS drugs trials during the late 80s and throughout the 90s, Milano witnessed first hand the creation of many of these myths. He remembers the effects of AZT, the first drug that seemed to be effective against the virus, and what happened when the FDA approved it in 1987. The drug was not able to suppress the virus long-term, and was delivered to patients in such high doses that it soon "looked like the drug killed them."
"It gave my boyfriend an extra year of life," Milano tells me. "Is that good enough? Is living til 26 good enough?"
During a workshop last week, he explained the progression to double combination therapy: the use of AZT, in lower doses, in tandem with the drug 3TC. When it entered the market in 1993, it reduced the viral load (the amount of virus in the body) by 95%, giving people two to three more years before their virus became resistant.
"So my boyfriend would have lived til 28, not 26," says Milano. "Is 28 an acceptable age to die?"
Today, the norm is triple combination therapy, which, if taken correctly, lowers the viral load by 99.99%, at which point the virus will no longer show up in a blood sample and is considered suppressed. But, here's what Milano wants his clients to understand more than anything: "With HIV meds, if you stop taking them, they will stop working. And when you restart them, they will not work, and they will never work again." If you miss a dose, and the virus is able to replicate and mutate in the presence of the drug, it will eventually become resistant.
HIV medication requires a religious adherence rate to remain effective, and Milano argues that what people learn during a half-hour appointment with their doctor will never be enough to truly understand the importance of not missing doses.
The other crucial role of community action is battling stigma. Today, if a person receives an AIDS diagnosis in their 20s, not only do they have the same life expectancy as a negative person, they will often live beyond it. "I go to the doctor maybe four times a year," Milano tells me, "How many times do you go? Maybe once?" (If that.) "It means that often a positive person will catch other health problems earlier on." But, he continues, none of that matters to the recently diagnosed 32-year-old man who came to see him last month.
"I spent a number of sessions teaching him about the disease. And he ended up being quite comfortable that he was going to live a long and healthy life. The thing that really drove him crazy was the stigma - that he would now have to tell all his friends who look down on people with HIV that he has it." He also notes the prevalence of phrases like "disease free" and "clean and negative" on hookup apps like Grindr.
Educating people about the disease and how to manage it, Milano believes, is the only thing that will disarm the prejudice against people living with HIV. His two main allies in the fight are science and his own story. Facts are reassuring, and so is seeing "somebody who knows what he's talking about and has been living with HIV and healthy for 34 years. Someone who isn't lying down and dying."
After pushing for eight years, with no luck, to make community classes available through the New York State AIDS Institute, where he used to work, Milano's ACRIA workshop is the fulfillment of a long-time crusade. And in July, after another fight, Milano managed to get his proposal for community-based HIV treatment education across New York State officially signed into Cuomo's Blueprint.
"I am turning 60 next year and it means a lot for me to be able to give back," he tells me at the end of the workshop. And then he recites a George Bernard Shaw quote he often shares: "This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one; the being thoroughly worn out before you are thrown on the scrap heap."
Milano always likes to end his classes with hope. In 2017, he says, it's likely that monthly injectable medications will be available, drastically reducing the problems caused by low adherence rates to medications in pill form. And, if there are young people in the room, he tells them they'll probably see a functional cure in their lifetime.
Finding a cure isn't something he always believed in, though—especially before organizations like ACRIA existed. But by 1995 he was resolutely hopeful. That year, he wrote in an article for POZ magazine, "If it's childish to work for a cure, I guess I'll never grow up."
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Text Alice Newell-Hanson
Image via Flickr/Aaron Muszalski