HIV's Longtime Survivors

While activists fight to make sure HIV is no longer thought of as just “a gay disease,” it’s easy to forget that gay and bisexual men were, in America at least, the first to contract HIV. Many of those who survived decades while positive have become leaders in the fight for awareness, prevention, and a cure. We caught up with four long-term HIVers—all gay men that have been positive for over two decades—who are doing incredible things for the rest of us.

James Vellequette: left who was an openly positive model, in 1994; right, James today
Associate director of the Condom Nation Tour in Los Angeles

When did you first find out you were HIV positive?
November 27, 1990, at the Red Lion Hotel in Orange County, Calif. I was infected on Octboer 3 by a guy I was seeing at the time, and I experienced a dramatic seroconversion that started on October 16.  My doctor, who had tested me negative in August, tested me again in mid-November and told me that I was just barely positive. Apparently there were just a few P24 and other key proteins showing up on the test panel, but enough to agree with my recent illness for him to deduce that I had recently contracted HIV.  

As I had been through such a rough time, he invited me over to his house for Thanksgiving dinner and some events at the beach over the weekend in Newport Beach, and then told me on the Monday after Thanksgiving at the conclusion of a community event dinner  held at the Red Lion Hotel.  I will never forget the name of that hotel.  Not even sure it still exists, but I know where I was sitting at that moment and the look on his face when he told me. I was stunned.

At the time, did you think you’d be able to live the life you’ve lived with HIV?
Well, I don’t know if I had a real “life-plan” that I had to give up, since I was only 24 and floundering a little in determining my life goals, but with regard to my overall longevity, it was not looking good and I fully expected to be dead by 1998 at the latest.

You say you’d make a lousy gay stereotype—but there’s a real issue behind that.
Yes, I can’t dance, sing or put together colors or an outfit so I’ve often felt like I never fit in with the core of the community that gets all the attention. Also, I am gay and fully accepting of who I am without shame or question, but gay rights has never been an issue that I have been involved in. Once I started doing HIV advocacy work, I decided that I needed to focus on one or the other, but I could not do both or my split focus would undermine the quality of my effort.  I figured that there were enough HIV-negative people to carry the gay rights banner.

Do you have a partner or spouse? Are they HIV+?
I have been seeing a guy for a year who is also HIV-positive. My two previous partners—both about five years—were negative. I have been in mostly serodiscordant relationships over the last 22 years.

What has been the biggest surprise about having HIV?
That I am still here. Not all HIV is the same. Sometimes you get a little cold, or a big bad cold, and my virus seems to be a sturdy one. I got my AIDS diagnosis in only three years from infection, and things were not looking very good and thus I had to go on disability from McDonnell Douglas Aircraft in Long Beach, Calif., where I was the scheduler in charge of coordinating sub-assemblies from our international partners. As we get older we care less about what people think about us. I hit that phase earlier than a lot of people do because I live with a quiet ticking noise in the back of my head thinking that I am always running out of time.

Do you worry about getting older with HIV?  
I fully expect to die at any time some days, and I do not mean that with any sense of drama. The medications that keep me alive are also toxic, and we know that in my gut, where the virus lives and thrives, that my cell structure is aging at a rate quicker than someone who is negative. I am fine with all of this—it is a fact of medical science so I simply appreciate all of the extra time that I have had and value every year I can tick off is another blessing.

At some point in the last 20 years, my friends stopped dying of specific HIV-related issues and more of them just started dying in their late 40s and early 50s of heart complications and other non-HIV diseases. For those of us in the battle long-term, we knew what it was the long-term affects of the drugs and the virus.  That is who is dying of AIDS today in the U.S.

So many gay and bi men died of AIDS complications in the ’80s and ’90s. How did that impact you?
I found out I was positive in 1990. There was no one there to “show me the way” as a 24-year-old living in Los Angeles with the virus, which was stunning eight years after [AIDS was discovered], so I started a support group in 1994 through Being Alive L.A. and the L.A. Gay and Lesbian Center called Positive 20s. Over the course of the seven years that I ran the group, and along with all of the people that I had met doing my advocacy work and doing lots of public speaking about living with HIV, I wrote down the names of 106 friends on my “goodbye” list—and then I just stopped counting, but that did not stop the dying. I just could not write down any more names. To this day I cannot visit that NAMES Project AIDS Memorial Quilt even though I was less than 100 yards from it at the National Mall this summer.  

I consider that time, from 1990 to 1996, as my own personal Vietnam, where I just experienced so much loss that I grew numb in order to function.With the arrival of protease inhibitors in 1996 I went on a tough combination, but it turned my numbers around and I went back to school to get my bachelor’s degree from Santa Monica College and the University of California, Los Angeles.

What don’t people realize about HIV?
That it is real part of their lives. That it is easier to get if you are not on your game and thinking smart all the time about where you are putting things into your body, whether it is sexual or drug-related.  People think that someone with HIV is going to have a sign on them that warns them so that when that time comes, they will play extra safe with them. Lots of pretty people with stunning bodies have HIV.  More than 20% of the people with HIV do not even know that they have the virus, so how can those people protect you if they do not even know themselves?

Read more about James’s life at Condom-Nation.tumblr.com.

Robert Katz - left: on a trip to Boston in 1985 months before being diagnosed with HIV; right: Robert now
Board member emeritus of Positive Pedalers and training ride leader for the annual AIDS Life/Cycle bike ride from in San Francisco to Los Angeles
 
When did you first find out you were HIV-positive?
I found out 27 years ago in 1985. I’d been hospitalized for an unrelated medical condition and my doctor felt that the test results would be helpful in determining the course of treatment. From 1978 to 1984, I had been a participant in the New York branch of the hepatitis B vaccine trial. Thanks to that participation I was able to find out, a couple of years after receiving my test results, that I’d been positive since not later than the spring of 1981. I subsequently have surmised that I was probably infected in December 1980.

At the time, did you think you’d be able to live the life you’ve lived with HIV?
I have to admit to harboring two simultaneous and conflicting sets of thoughts. On the one hand, I assumed I’d get an AIDS diagnosis sooner or later. At the time I was tested my doctor repeated the official line on the subject, which was that perhaps 15% of those infected with HIV would develop AIDS. Everything I’d read about the virus up to then convinced me that, in the absence of an effective means of intervention, that figure was definitely incorrect. In 1985, there were no antiretrovirals and therefore no reason at all to think I wouldn’t someday progress to AIDS, despite what my doctor was telling me. After a certain amount of denial about my own health, as my friends began dying, I began to experience a great deal of fear about my own health. Simultaneously with that, my health continued to be good. I had no means of reconciling both of these thought processes so I tended to veer back and forth between one and the other. The presumption that I could be struck terminally ill at any time undoubtedly affected at least some of the choices I made. At no time did I seriously consider the possibility that I’d still be alive and well more than two decades later.

Tell us about your partner.
We’ve been together for over 10 years. He is HIV-negative. I would never intentionally do anything that might risk exposing him to HIV.

What has been the biggest surprise about having HIV?
There are so many surprises. Based on what I knew at the time I tested positive, the biggest surprise of all is that I’m still around. Another surprise is that, for the most part, I’d be able to live without having to take my status into account. The change in the course of the epidemic occasioned by the development of effective medications to combat HIV was certainly a huge surprise. This is not to say that I take things for granted. Each time I take my medications is a reminder of my status; each time I have to pay for those medications is yet another reminder. Despite having very good health insurance the medications are not cheap.

Do you worry about getting older with HIV?
I have a certain amount of ambivalence. Since the medications I take appear to be working I suppose I operate mainly on the assumption that I will live as long as I might have otherwise .At the same time there are undoubtedly indications that long-term infection, combined with the long-term effects of medication, could alter things suddenly in ways that are difficult to anticipate and difficult to avoid. I try to live as healthy a life as I possibly can; my few remaining indulgences are pretty minor. I have been clean and sober for a very long time and plan to stay that way. While certainly no guarantee, I presume that avoiding alcohol and recreational drugs is certainly desirable in and of itself. I try to stay physically active. I recently completed my thirteenth AIDS charity bike ride. I certainly hope my relationship endures. I don’t know what it would be like to be elderly, single, and living with HIV. That would definitely be a challenge.

So many gay and bi men died of AIDS complications in the ’80s and ’90s. How did that impact you?
I lost many, many friends to HIV, most of them after I tested positive. The partner I was with from 1986 to 1992 passed away. My previous partner, died not long afterwards. I was hit particularly hard between 1990 and 1994, and I found the experience to be emotionally devastating. I went through two different rounds of grief counseling in addition to undergoing several years of psychotherapy. I found it very difficult to date during that time and was rather pessimistic about finding another relationship. I definitely experienced—and continue to experience—a certain amount of survivor guilt. In particular, I strongly presume that I was the one who infected the partner I was with on and off from 1980 to 1986 even though I am constantly reminded that by the time we knew HIV existed it was already too late to have done anything about it.

What don’t people realize about HIV?
None of the treatments are perfect and there is no cure. Far too many people presume that nobody dies of AIDS anymore, at least not in First World nations. This of course is not true. There are, of course, certain elements in the world that insists on continuing to think of HIV as a “gay” disease, despite the fact that the overwhelming majority of those living with HIV in the world today are heterosexual.
Visit PosPeds.org for information on Positive Pedalers, and AIDSLifeCycle.org for details on the ride

Nelson Vergel - left: Nelson and his partner Calvin in 1987, the year he was diagnosed with HIV; right: Nelson now
Founding director of Program for Wellness Restoration in Houston (PowerUSA.org)

When did you first find out you were HIV positive?
In 1986. I most probably got infected in 1981, since I had all the symptoms of infection then.

At the time, did you think you’d be able to live the life you’ve lived with HIV?
Not at all. Everyone was dying around me and I felt like I was in a war zone. I was waiting for the next bomb to fall on me.  

What has been the biggest surprise about having HIV?
That not only I can live healthy but I can be 100% out about my status with the work I do in the community. HIV gave me purpose to help others.

Do you worry about getting older with HIV?
Yes. In a way, I never got mentally prepared to get older since I thought I was going to die before I was 30. At 53, I feel and look relatively OK for having had HIV for 27 years and been exposed to the nasty older HIV drugs.  But I worry about heart disease, fatigue, cognitive loss, and not living fully in the present. When I was told I was poz, my goal was to remain healthy so that I did not have to depend on anyone—I was a recent immigrant and alone in the U.S. I have the same goal as I get older.

So many gay and bi men died of AIDS complications in the ’80s and ’90s. How did that impact you?
I helped around 24 of my friends and three lovers die. After a while, I stopped grieving and became very “transactional” when someone died. I was the one who took care of funeral details while everyone else seemed to be falling apart. I guess I wouldn’t let myself grieve to protect myself from becoming depressed and sick.

What don’t people realize about HIV?
After 31 years, people forget that HIV still kills and that it has complications. They forget that HIV-positive people face stigma, and have a hard time dating and finding partners that do not freak out about HIV.

Tell us more about your work.
I am the founding director of Program for Wellness Restoration, a 17-year-old nonprofit in Houston that educates HIV-positive people about best ways to stay healthy. I am also a treatment activist in the areas of salvage therapy and cure research. I am a lecturer, an expert at TheBody.com, and author of books. My friends joke that I all I do is “talk shop” about HIV. I think HIV gives us an opportunity to face our fears of death and sickness, and many of us have been able to reinvent ourselves after this terrible diagnosis. I remind newly diagnosed people that HIV is not the end of the world, but it is also no picnic. Staying educated is key to growing strong with HIV.

To read up on the Program for Wellness Restoration, go to PowerUSA.org

Michael Smithwick - left: Michael in 1992, three years after being infected with HIV; right: Michael now
Executive director of Maitri Compassionate Care in San Francisco

When did you first find out you were HIV-positive?  
In 1979, while living in Greenwich Village in New York City, my lymph glands became suddenly enlarged and I started to experience periodic, drenching night sweats. But aside from those relatively benign symptoms, it wasn’t until the HIV test became available in 1985 that I was officially diagnosed as positive.  

At the time, did you think you’d be able to live the life you’ve lived with HIV?
Well, in the mid-’80s an HIV-positive diagnosis was no big deal.  We were all told not to be worried, that it simply meant that we had been “exposed” to the virus, not that we would necessarily become ill. It wasn’t until later—after the passage of time and many more deaths—that it was determined that most positives would eventually develop AIDS if the virus were left untreated. At that point, I certainly didn’t think I’d live a full life. In fact, I recall praying that I’d live long enough to see my infant goddaughter walk and talk. She’s now 23.
 
Do you have a partner?
I do have a partner who is also HIV-positive. We’ve been together going on 20 years.

What has been the biggest surprise about having HIV?
That, aside from the health concerns, there are some hidden blessings.  Knowing my HIV status, and realizing that there were no guarantees about my long-term health, allowed me to be much more open about my life with others. I told all my family, friends, and even casual acquaintances of my HIV status back in the ’80s. Being so open allowed me to rise above the stigma and shame that seemed to be pervasive at the time. It liberated me actually, and allowed me to appreciate each and every day of life much more fully than I would have otherwise. Life is such a gift that too many people take for granted.

Do you worry about getting older with HIV?  
I don’t. Having just turned 56, I realize that people with long-term HIV are at higher risk for cancers and organ dysfunction at a younger age than the general population. But worry is such a negative emotion, both mentally and physically. I prefer to do all that I can to improve my chances for continued good health and then focus my energies on the present rather than fearing the future. When I do consider the future, it is with optimism and curiosity.

So many gay and bi men died of AIDS complications in the ’80s and ’90s. How did that impact you?
I lived through the ’80s and ’90s in San Francisco’s Castro District. So, yes, I saw many friends, neighbors, and acquaintances sicken and die. It all happened so quickly and there seemed to be no end in sight. My own HIV-positive status really didn’t alter the experience of observing the epidemic take its horrible toll. Like others, I got angry at the lack of government action, and tried to help in any way I could, and grieved for the many precious lives lost way too early.

What don’t people realize about HIV?
That it is not over! Too many people now think of HIV as an unfortunate condition that simply requires popping a few antiviral pills each morning.  We must continue to push for a vaccine for those who are not yet infected and a cure for those who are. Until then, let’s not pretend that AIDS is “fixed.”

Find out about the Maitri Compassionate Care in San Francisco at MaitriSF.org