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HIV's Longtime Survivors

RobertKatzx560 HIVPLUSMAG


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 for information on Positive Pedalers, and for details on the ride


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