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Mondo Guerra on Adherence: How to Fashion Your HIV Treatment Plan
An Interview With Fashion Star and Project I Design Spokesman Mondo Guerra

By Kellee Terrell

September 8, 2012

Mondo Guerra

Mondo Guerra

The first time Denver fashion designer Mondo Guerra was interviewed by TheBody.com two years ago, he had just recently disclosed his HIV status on television as a contestant on the eighth season of the hit fashion competition show Project Runway. Since that time he's become a committed HIV advocate. He's currently the spokesman for Project I Design, a campaign encouraging people living with HIV to work with their doctors to tailor the treatment plan that's right for them. Mondo sat down with Kellee Terrell to talk about what's happened since his historic disclosure -- and his own past adherence challenges.

Tell us a little bit about what's changed in your life since the last time I interviewed you for TheBody.com.

Well, the biggest change is that I'm no longer a loser; I'm a winner!

[Laughs] Were you really a loser before?

No no! I'm just talking about winning Project Runway All Stars. As far as my HIV work, that's changed dramatically. I've worked with Merck on two different campaigns for the past two years. I've really applied what I shared with the world on Project Runway to how I've been living with HIV for the past two years. I have this opportunity to speak and lend a voice to a cause that is so much greater than so many doubts and fears.

I know how that is, because I was that person two years ago. I had so much doubt and I had so much fear; there was so much negative in my life. Now that I've owned this disease, and not let it define me anymore, it's been such a blessing to able to talk about it. That's what really helps me. The beauty of Project I Design is that I get to travel the country and talk about that, and so many people are so willing to talk and share their personal stories with me. I really to try to approach each person's story and apply it to how I live my life, because I think if they're willing to share a piece of what they do with me, then I should share what I do with them. It's a give and take. I think that is so important with the fight against HIV: We really have to share this information and communicate, and know what our struggles and our triumphs are, and what we're going through and how our relationships are working -- not only our relationships with ourselves, but also with our families, and most importantly with our doctors.

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Tell me about the I Design campaign, and the importance of tailoring your treatment plan along with your doctors.

The campaign is really about empowering people living with HIV to take a tailored approach to the disease, because all of us living with HIV are different. We all have different needs, and so our treatment plans should reflect that. And you're not going to find out right away what all those needs are. So it's really important to have an open dialogue with your doctor, and to have a doctor that you really trust, that you can go in and share all your information with.

It took me a while to find the right doctor, and it can get frustrating. You start doubting you'll ever find the right doctor. Once you do, it should be someone you feel connected and safe with. Once that happens, when you go in for your appointments, be prepared, know what you need to talk about. There are so many times that I've gone into the doctor's office and left feeling like I didn't get the information I needed -- I didn't talk about this, and I didn't talk about that. It's so important to be prepared not only with questions, but to really communicate with your doctor; your doctor should be like one of your best friends.

You know you have your normal checklist to talk about CD4 count and viral load, and maybe some of the side effects that you're getting from the treatments, but you know now that these treatments are allowing us to live longer, healthier lives, we also have to keep in mind that there might be other health concerns. It's so easy for us living positive to be so focused on our treatment for HIV that we kind of forget what else we need to talk about: mental health, diabetes, heart disease, cholesterol levels, whatever it is. I think asking questions is the most important thing.

There were a lot of times where I failed with my own treatment because I wasn't asking questions. Your doctor can prescribe you something, but you want to be able to say "So why do I need to take this? What are the side effects? How am I going to feel the next day? How long is it going to take me to get used to this drug?" You have to think about the bigger picture. It's not just about taking treatment.

What advice do you have for people who may have lots of questions about their treatment, but have doubts or fears about speaking up during doctors' visits?

That's exactly the reason to speak up, because you do have the power. If you ask questions, and you know how you're navigating the disease and how you're approaching your every day, if you know what you're taking and how it affects you, and you talk about all this to your doctor, your doctor's going to recognize that you really are taking control.

Being HIV positive is a big job. You really have to work to manage it. That's the fact of the matter. But you want to work on your HIV treatment, and work with your doctor, so that you can be able to do the things that you love. Because without effective treatment, you're not going to be able to pursue bigger things. So that communication is really important.

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You could have been the face of any HIV-related campaign. Why this one? Why was I Design so important for you to be involved with?

I didn't plan to disclose that I was HIV positive when I was on season eight of Project Runway. I didn't know that that was going to happen on that particular episode; I didn't expect it to happen; I didn't want it to happen, to be honest. It just kinda happened that day. And it happened for so many reasons; it happened that day, in part, to inspire people, and to make people feel safe, and to make people want to talk about HIV more openly.

So when I was approached by Merck about this collaboration with the campaign, I thought it was a perfect fit, because yes, I do have this visibility and people know who I am; they know that I'm not a negative person, that I'm always very positive. Even through my work; it's always very colorful and kinda crazy. I felt like this was just a perfect match for me to lend my voice to this cause. More than that, it was mostly because so many people had so many questions, and sometimes they're just afraid to ask. People can feel comfortable with me, and they know that I talk about things freely and that I'm going to be honest, and very direct, but not forceful or condescending or preachy.

A lot of these medical write-ups and things that you pick up in the doctor's office tell you exactly what they think you're supposed to do. I think that's part of why people don't ask questions: Because they're so used to being told what to do.

That's why, on ProjectIDesign.com, it's really easy to get on there, and read the conversation checklists for your doctor visits, and watch the videos. They're just very easy-to-digest, simple messages. They don't speak at you; they speak to you. There's a lot of thought that goes into your treatment plan and what works best for you, so what we encourage people is to think about different aspects of that. It's not about You have to do this, you have to do that, because people are tired of that.

It's important as well because, when a person feels disempowered from talking about their treatment, a lot of times that leads a person not to adhere to their medication.

Right, and you know you have to keep up with your medication. A big part of being able to keep up with your medication is having a support system around you.

People always ask me, what would you say to somebody that's newly diagnosed with HIV? I would say surround yourself with people that you trust, and people that love you, and people that you love. That's the most important thing, because you might forget to do this, you might forget to do that, but they're going to remind you, because they want what's best for you. You might not want the best for you right now, because you're in such a lonely place, but it's necessary.

Is there anything else you want to share about tailoring their treatment plans, and managing living with HIV?

I did another interview recently in which the interviewer asked me that same question. My answer was something like this: You have to take care of yourself; you have to know that you're number one, you have to know that you're important. There's so much emotional content, living with this disease that it can get very distracting sometimes. It can feel like something's hanging over you all the time.

But it's OK to feel important. It's OK to take care of yourself. You have to hold your own hand through this a lot. But don't be scared; you're not alone. It's so important to communicate: with your doctor, with yourself, with your support system.

The interviewer said, "That's so much like the language that we were talking about and using in the HIv community in the '80s and '90s." And I told him, "You know what, the thing about it is that the treatment plans can improve, but living with HIV is not going to change anytime soon. This is just common sense. We're always going to have to know how to cope.

In closing, let's switch gears to your work on Project Runway and as a designer. What's going on there?

I was on the casting panel for the current season of Project Runway. I was on every single audition; there were 800-plus people; and there were some messy things that I saw, some real messy things. But it was very inspiring. Some people just want to be on the show to be famous, or for visibility; but some of them really want to be designers. But a lot of them are just not ready. They have good ideas, but they've never been designers. A lot of people would say, "Well, if I get on the show, I'll learn and I'll do it." You don't have time to learn when you're on the show! You have to come in here with the skills and ready to go.

And some of 'em are just delusional. Oh my gosh!

Can you give us an update on your fashion collection that's going to be at Neiman Marcus? How would you summarize the line?

It's inspired by 1960's pop art. It's minimal for what I do; there are definitely going to be prints in the collection but, I kinda pulled back. There's some really fabulous outerwear, it was really important for me, knowing who the Neiman Marcus customer is, and where their locations are, to make this collection kind of season-less. So it's not specific for fall or for spring or anything like that. This is how I always feel fashion should be: pieces that are transitional, and that can lend themselves to any season; you just have to be smart about what's in your closet. And there are also pieces that you can grab and add to your wardrobe right now to pump it up a little bit. So there's those quiet pieces, and then there's just those statement pieces.

I also have an eyewear collection coming out for See Eyewear in the spring. That line is inspired by 1960s sitcoms. And then I have a sock collection. So all these little things.

I'm also recapping every episode of season 10 of Project Runway for the Hollywood Reporter. So guess what? I get the episodes four days before everybody sees 'em!

Visit Mondo's website, find him on Facebook, and follow him on Twitter @LoveMondoTrasho.

Project Runway Season 10 airs Thursdays at 9 p.m./8 p.m. Central on Lifetime.

This transcript has been lightly edited for clarity.




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