This Positive Life: Reality TV Star Talks About Living With HIV and Fighting Stigma

An Interview With Jack Mackenroth

Contributing Editor

This is Olivia Ford reporting for The Body. I'm here today with Jack Mackenroth. You may know Jack from his time as a contestant on Bravo's design-competition TV show Project Runway_. You may_ not know that, in addition to being a gifted designer, Jack is also a committed HIV advocate who has been living with HIV for almost 20 years himself. Today I'll be talking with Jack about living with HIV and being open about his HIV status on reality TV.

Welcome, Jack, to This Positive Life!

When did you find out you were HIV positive?

I found out I was HIV positive through a doctor's visit when I was 20 years old. I had some symptoms I was concerned about. That's how I found out.

Jack Mackenroth

About Jack
Home: New York City
Diagnosed: 1990

"By the time I got on Project Runway ... I was so comfortable being HIV positive and being open about it ... that I didn't really even think twice," says Jack Mackenroth, a former cast member of the Bravo network's fashion-design reality show. The fact that Jack has been living with HIV since 1990 is old news to Project Runway fans. Jack was 100 percent open about his HIV status, even while living in the fishbowl of reality television. Now Jack uses his high profile, and his design expertise, to fight HIV stigma.

To watch a video of this interview, click here.

What year was that?

That was in 1990.

What was the first thing you did after you found out?

In 1990 there weren't a ton of options, so I did kind of freak out for a little while. I remember having a little bit of despair, knowing I was probably going to die soon. What are my options? What am I going to do?

Shortly thereafter, probably after one or two years of just figuring out the climate -- what my options were, that sort of thing -- I found a great doctor and then from there the discussion started. I got on a treatment regimen and it worked out from there.

Do you still have the same doctor now that you had then?

Actually, initially, I started with one doctor who was a specialist -- there weren't as many HIV specialists as there are now, obviously -- and then I found the doctor that I have now and it's been great since then.

Can you talk about some of the ways that you became the self-aware, healthy, content person you are now?

Yes. Just as with anyone who finds out that they're positive -- especially with the stigma that still surrounds the disease, unfortunately -- I had some depression, thinking I wasn't going to live very long. I was only 20, 21, 22, dealing with all that and living in New York. There was a lot going on in my life. But I found a therapist who helped me with a lot of issues. Once my health started to stay fairly good, my mental state improved as well.

With all the stigma and discrimination around HIV, what made you decide to be out about your status in such a public forum as Project Runway, knowing that that might bring a potential negative into what could be the most positive experience that you'd had in your life so far?

Since I was diagnosed so long ago, in 1990, I think that by the time I got on Project Runway, which was just last year, I was so comfortable being HIV positive and being open about it and I'd been open about it for so many years that I didn't really even think twice about hiding my status.

To me, I'm so comfortable with it -- as I hope that everyone will get to be. It's like, "Oh. I have brown hair. I have blue eyes. I'm HIV positive." That was my thought about it. I knew that the viewing public of Project Runway would have a larger reaction than I was having in my head. But I knew I could do good work coming from it. To me, that was more important.

I just live honestly. It's what I do.

Have there been any repercussions from being such a public HIV-positive person? If so, what have they been?

Generally, I would say 99.9 percent of the responses have been supportive and outreaching: people e-mailing me saying thank you so much for being a role model or asking me questions about HIV and how they can get resources, people from other countries.

There have been a few unstable people out in the world who, for various reasons, think that I deserved HIV, or it's God's punishment -- all the wacko stuff that you get.

I know those people are out there and I was actually surprised that there weren't more of them, to be honest. So, yes, generally it's been a really positive thing.

How do you respond to people who stigmatize HIV-positive people?

I believe that no matter what you tell that group of people, it doesn't matter. They're not going to change their opinions. It's not logical and it's not rational. They think it's a punishment from God or they think whatever their crazy thoughts are. I just don't think that their minds are going to change too much.

We're talking about your public face as the result of Project Runway, but in terms of the intimate space of being on the show: There was a lot of love and support among the cast members; but when the camera was off, did you experience any stigma or ignorance from any of the other cast members, living in such an intimate space with strangers for such a long time?

That's a good question. Actually, not at all. In our contract, there was this whole disclosure: "We have not tested anyone for any diseases, period, so you know going full well into this that that's the situation." Also, not that HIV is a "gay disease" or a "gay male disease," but a lot of the other cast members were gay men familiar with HIV, and everyone was really cool.

The only concern was when I contracted the MRSA [methicillin-resistant staphylococcus aureus]. That, actually, is very contagious. We're working in close quarters, so that did become an issue and that was a concern of mine as well. I didn't want to endanger anyone else.

But the HIV thing was like, that's cool. Actually, people praised me. Quite a few members of the cast said things like, I really admire your courage for coming out about that, it's so great. So it was a positive experience.

How did you decide to start doing activism around HIV? Had you been doing it for a while, or is it something you came into when you became more visible?

I definitely became more of an activist as the visibility increased, but it is something I've always done. I've delivered food to homebound people with AIDS. I did that when I lived for a year in Atlanta. I've done that in New York City. I swim on a swim team that does a benefit once a year to raise money for some local AIDS organizations in New York City. So I have been actively involved.

In the early years, I benefited from a lot of government-funded programs. ASD [Adult/Adolescent Spectrum of HIV Disease Project] helped me a lot. I was a kid struggling in New York. I think it's important to give back. Now that people are actually listening to what I have to say, it's an even better platform to distribute a message.

What do you think it would take for other people to feel empowered to be public and out about their HIV status?

I think that it's getting the ball rolling, which is what we're doing through the program Living Positive by Design as well, which we'll talk about later.

Once one person talks about HIV and then another person sees that person talk about it and feels comfortable and says, "Oh look, they're just living their lives," there's no judgment about it. Hopefully you just keep delivering the message: It's not a moral judgment. It's a disease. We aren't our disease. We're just people managing our lifestyle and managing our disease as best we can and living a full life.

What are you up to now? What sort of work are you doing in terms of design and in terms of activism?

I'm working on a really exciting HIV/AIDS educational campaign called Living Positive by Design. That's in partnership with Merck. We're doing some city tours, partnering with local AIDS organizations.

The key message is combating the stigma that surrounds HIV. We all know that when people have fear and shame around the disease they don't get the help that they need, they're not honest with their partners and their health care providers and their families. We encourage people to really partner with their doctor, have a really symbiotic relationship where they can be open in discussing that.

As far as the design front, I'm actually doing crazy stuff! Later on this month, I'm making a couture wedding gown out of condoms. I'm doing something called "The Chocolate Show" where I have to make a Wonder Woman costume out of chocolate and pastries. So I'm doing little design projects and then there might be a TV show in the works. We'll keep you posted on all that.

Yes, please do!

Yes, it's very exciting!

Thank you so much for all the amazing work that you're doing and for speaking with us today.

This transcript has been lightly edited for clarity.

This Positive Life: Jack Mackenroth (video)

This video was recorded at the 2008 United States Conference on AIDS in Fort Lauderdale, Fla.
Copyright © 2008 Body Health Resources Corporation. All rights reserved.

Download the audio file