ACRIA Sorts Fact from Fiction in Their Living With HIV Series

There's a cure for HIV -- only the government won't let us have it. They cured Magic Johnson, but they won't help you. HIV medications will destroy your liver, and make your body all lumpy.

When it comes to myths and misinformation about HIV, Mark Milano has heard them all. He's an educator at ACRIA, and part of his job is to teach people the facts about HIV/AIDS.

"I've been doing these workshops for about 25 years, and no matter how often I do it, the same misinformation and myths are thrown at us from people over the years," said Milano. "HIV meds will kill you faster than HIV -- that's the most common thing people say. It's true that some HIV meds can have side effects, but the same people who refuse to take HIV meds will take virtually any other meds their doctor prescribes."

Milano was living in Chicago in 1982 when he was first diagnosed with AIDS. It was so early in the epidemic that they didn't have a test, or even an acronym, for HIV. By 1987, he had relocated to New York City and joined ACT UP in an effort to find a clinical trial for a drug -- any drug -- that would help keep him alive. He began calling hospitals and created a directory of clinical trials.

After a few years, his work caught the eye of the New York State Department of Health, who hired him to train medical and non-medical service providers on the facts and fiction around HIV/AIDS. After eight years, he moved to ACRIA, to continue creating a directory of clinical trials and educating consumers and non-medical service providers. Thirty-four years later, he has become one of the best educators in the business.

On February 11, Milano will launch a new cycle of his six-part series of HIV education workshops. He talks about the history of HIV treatment, and where people's misbeliefs stem from. The workshops cover HIV medications and history; drug resistance and adherence; understanding the immune system; how to read your lab results; HIV transmission, PEP and PrEP; and Hepatitis C and HIV. He starts by making things personal.

"I tested positive as soon as it was possible to do so, so first of all I present myself as someone who has been living with HIV for 34 years, and somebody who has gone through all the same fears and concerns as you," said Milano.

Back in the day, people took large doses of AZT, and there was no question, when you took that much, it was often toxic. All those early drugs like d4T, ddC and DDl were not very effective and quite toxic. By the mid-'90s, HAART was found to be very effective at controlling the virus, but came with side effects like a hump, Crix belly, or skinny arms and legs.

"I had a woman in a workshop who was very attractive and wouldn't go on meds because she said, 'I know what they do to my body.' But her CD4 count was below 100, which was very dangerous," Milano recalled. "I said if you don't get your CD4 count up, you're gonna have a great body but you're not gonna be alive. I worked with her for a while, but eventually she just said 'Stop calling, I don't want to talk to you.' She was someone I was not able to help."

In general, said Milano, people can tell if an educator is being honest, or if they are soft-selling or whitewashing the information. He tells his classes that while early drugs like Crixivan, Norvir and Viracept often had side effects, drugs prescribed today have improved dramatically. They're often one pill, and don't come with major side effects.

He fosters an environment in which the clients talk to each other, sharing their own experiences. For example, someone who fears taking Atripla because they've heard it causes crazy nightmares can talk with the person right next to them, who may tell them that yes, Atripla gave them crazy dreams for the first few weeks, but then the dreams stopped.

"That is so much more powerful than anything I can say," said Milano. "I have everyone in the workshop talk to each other, and tell about their experiences with the meds. People in the room teach each other as much as I teach them."

Another important factor is that he treats his clients like mature adults, talking to them rather at them, and teaches them both the laymen terminology and the medical jargon, saying, "going to the doctor and being able to speak in their jargon increases respect from that doctor tremendously."

After all these years teaching, Milano has learned what gets through to people and what doesn't. He recalls a recent one-on-one counseling with a newly diagnosed 27-year-old guy, who feared he would be taking pills for the rest of his life. Milano told him that yes, you may be taking pills for 10 years, but things are changing quickly.

A once-a-month injectable is being researched, and there is also a lot of work being done on a functional cure. You may not be able to get rid of HIV, but someday you may be able to control the virus without medications. You won't be taking meds for 60 years, Milano told the young man, but you need to take them now so that when better stuff comes along, you'll be alive, undetectable and ready for them. It's a message of hope about what's in the pipeline.

He teaches clients exactly what happens when you miss a dose of HIV, and how missing more than three a month can lead to resistance, taking that drug off the table for you, forever. He explains how HIV is the only virus that directly attacks and destroys the immune system, and how to be able to look at your lab report and know exactly what the numbers and letters mean about your kidney and liver function, electrolytes and reference range.

Milano speaks to clients about how PEP and PrEP help people from getting or spreading HIV, and how being undetectable lowers the chances of transmission. For example, if you're on PrEP and your partner is undetectable, some couples have taken off the condoms, since the chance of transmission is extremely low.

He said people still don't know the risk levels of different sexual behaviors, and some don't even understand basic transmission. He said one recent client's aunt got angry with her because she shared a utensil with her niece. He had to explain to her that it was not risky to do so.

Toward the end of the series, he covers HIV transmission, noting that, "people with HIV are incredibly concerned with not giving the virus to anyone else. Yet there's a real lack of info on what's risky and what's not."

Milano finishes with a talk on Hepatitis C, a very risky virus that is killing gay men at an alarming rate. He warns that many people are co-infected with HIV and Hep C, and spread it via multiple partners. Many don't realize that new (very expensive) drugs can cure Hep C in a few weeks, but noted, "it's more important to just know how to avoid it."

Tremendous misinformation about Hep C. Few goals: one is to wipe out misinformation, two is to present info w level of detail that's going to be useful. Don't say HIV is burglar and CD4 is cops, etc., no schoolchild stuff, I give them actual science and translate into terms that are understandable. Always give info but remove jargon, or teach it.

"With those six workshops, people come away with a solid foundation on how to manage their illness," said Milano. "People say they have been living with the virus for 10 or 12 years, and never understood drug resistance until I explained it. It is really gratifying to get adults speaking to one another and all learning together."

Milano is focused on finding an end to HIV, and testified before a panel about New York State's goal to double the number of people who are undetectable. Right now, he said, about 40 percent of people are undetectable. Twice as many need to be, in order to see the epidemic peter out because of low transmission rates.

"The challenge is to get to that 80 percent. Even if you were able to diagnose every person with HIV in New York State (now only 86 percent are diagnosed) and even if all were in care, (2/3 are now) and on HIV meds, you would not get them all undetectable unless you do the education we do," said Milano. "It requires a level of knowledge that the vast majority of PLWHA don't have. They don't know how meds work, how to avoid missing doses, or why it's so dangerous to miss them. Just going to a doctor is not going to get you undetectable. Community education has to be a part of the plan."