This year, ACRIA, an international AIDS research and education group with a popular center on aging and HIV, acquired Love Heals, the Alison Gertz Foundation for AIDS Education, a major source of HIV/AIDS education for New York City's youth. TheBody.com spoke with two impassioned gay men from two different generations who are now colleagues in the merged entity, asking them to share their experiences as people with HIV and how they support their peers who are just finding out they are also living with HIV.
Mark Milano: I'm Mark Milano and I'm 60. I was diagnosed with AIDS in April of '82. I watched many of my friends die in the '80s and '90s. I was in ACT UP and a lot of community-based organizations.
Back in the '80s, for those of us who were fighting AIDS and losing so many friends, the idea that one pill, once a day, could lead to a normal lifespan was a pipe dream. It was something we just prayed for and hoped for. And now that we have that, it's really marvelous.
But I have to wrap my head around the fact that young people didn't experience any of that, and they may see taking a pill every day as a real burden. Part of me wants to say, "Do you realize how many thousands of people dreamed of this day?" but then I step back and remember that we're approaching this epidemic from very different perspectives.
Also, I talk to a lot of older adults, people who are over 50 like me, who never thought we'd be here. And, suddenly, we have to reformulate our lives and decide to keep living and deal with all the illnesses, in addition to HIV, that we have.
I'm dealing with about a dozen comorbidities, in addition to HIV. That's a big challenge for all of us, too.
Jahlove Serrano: My name is Jahlove Serrano. I'm 29 years of age. I was diagnosed in 2004 with HIV and diagnosed with AIDS in 2008. I contracted my first time having sex. It was something that I didn't think would happen to me. I was very naive to the fact of becoming HIV positive although, being a black, gay man, an Afro-Latino man in the United States, you hear these rumors of HIV being associated with gay men. But at the time I was so sexually fluid that I didn't really understand. I didn't understand the concept.
So when it comes to HIV in the young generation, some of us may be naive.
But we have to understand that there are also perinatally infected youth who were born with HIV. Behaviorally infected and perinatally infected youth definitely made a bond. I'm part of that movement of seeing behaviorally and perinatally infected youth make that bond.
We actually look at this disease not as deadly as it used to be. So sometimes when it comes to adherence, we're not right there. We want to live a normal life. So it's hard for us to see what was paving the way for us.
There's a lot of us that also became advocates, who want to make sure that our peers are getting the message. And so a lot of us became peer educators and wanted to give back in that sort of way. It's hard for us to apply the same message to ourselves versus preaching.
TheBody.com: When you sit down with someone around your age who just found out that they're HIV positive, what are the top things that you want to ask them about or tell them about?
Mark Milano: I've done this actually a number of times. The first thing I say is it's important to know that having HIV is not going to end your life, but it is going to change your life. Your priorities have to become different. Whereas health care might have been number 6 or 10 on the list of priorities, now it has to become number 1. Taking care of your health and your body has to be the first thing. Everything else -- career, friends, whatever -- has to move down. And if you focus on that, you will do well.
The people I counsel today who are newly diagnosed are not really concerned about dying soon. They're like, "I understand that." It's the stigma they're concerned about. And as a gay man, the stigma of having HIV is tremendous. And that's what's weighing on their shoulders.
I have to say, it is possible to be a person living with HIV and still be powerful and out there and live a wonderful life. In addition to living long, you can live a long, wonderful life -- if you don't let other people dictate how you feel about yourself. But that's the real problem today. It's not the lifespan; it's the stigma.
Jahlove Serrano: The first thing I would tell a young person is that it is OK not to be OK, especially finding out that you're newly diagnosed. Also I would have them focus on, "What were your dreams before even knowing that you were HIV positive?" And tell them that those are one of the things, the key things, that will push you going forward. Because your life is not HIV.
And also have them recognize that it is about the stigma; it is about the mental. So you have to also tap into that mental with first, minor steps. I would say, understand that HIV can only infect your body -- not your mind, not your spirit and not your soul. So always have the first up-hand, and then always take control of this disease.
Having that in mind, then I would talk about treatment. Then I would talk about everything else. Because you first have to tap into the mental space of that individual, to let them know that they can still accomplish their dreams and that this disease is only infecting their body. I think it helps them bring it down to a level place.
TheBody.com: You've each just entered or are about to enter the next decade of your life. What are your goals? What are you going to do in this next decade as a person living with HIV of your particular generation?
Jahlove Serrano: I'm still going to focus on adolescents and young adults. Thirty-plus years it's been an epidemic. Services, the government, etc., still don't know how to address the needs of young people. There's still a lack of services. There's still lack of understanding. There's still lack of investment. Especially with the type of work that I do -- people telling their personal stories to at least give a face to the disease so that young people can get it.
I want to work in the White House on their public policy on HIV and AIDS, because we keep talking about the end of the epidemic, but no one's talking about: What are their following steps? How is that going to be for people, that their jobs are based off their diagnoses? And people's housing? And insurance, etc.? So, I'm going to make sure that the up-and-coming generations have a bright future to look ahead to. And that would be me continuing to work in policy and also still focusing on services based on youth.
Mark Milano: What I want to do entering my 60s is share what I've learned with the younger generation. Those of us who have been battling this disease for decades know what it's like; we know how difficult adherence can be. My goal for the last 20 years has been to help people with HIV know what they have to know to live with the disease.
At ACRIA, we've spent years working on making this stuff clear so that people with HIV can understand. They don't have to go to medical school to understand what drug resistance is, how to read lab results, how the HIV meds work.
When I was diagnosed in '82, there was nothing. There was absolutely nothing. And I had to learn it all myself. I've learned it for 35 years.
So I want to now teach other people with HIV, whether they're young or old -- old people don't know this stuff, either -- and to say that you can learn; you can become an expert in HIV. And you can take charge of your health care.
I think it's great that Love Heals is focusing mainly on prevention. ACRIA focuses on prevention a lot, too. But we also focus on treatment, about teaching people how to live with HIV. So it's a great match for us to work together.
This transcript has been lightly edited for clarity and length.