by Ron Henderson

Protease inhibitors and combination therapy are changing many lives. For the first time, people with HIV are progressing not from illness to death, but from illness to health. For some, this change has raised confusing psychological responses. Many are less confident about the rosy predictions of a "cure" and have questions about the complexity of drug regimens, the risk of serious side effects, the expense of the medications, and the effect of new-found health on their everyday lives. For some, the new treatments have failed.

For people like me, this period of rapid change presents questions about what to do and what the future will bring. I've watched medical treatment evolve over the years that I have had HIV disease and been an HIV service provider, and yet, the most powerful influences on my own health care plan have been the choices and experiences of my friends. This article is a window into the lives of five people with HIV disease, people I know, who are facing these changes with excitement as well as apprehension. We all have been "infected" in unique ways by these hopeful times.

 

The New Numbers Game

This year I will be 45. I have been living with HIV since testing positive in July of 1985 and have worked in the epidemic as a volunteer, counselor, educator, and now as the director of a youth and HIV project in San Francisco. For 12 years, my T-cell count has averaged in the mid-300's and I have never taken antiviral drugs. I received an AIDS diagnosis after a bout with esophageal candidiasis four years ago and have had hairy leukoplakia and chronic bronchitis. But, despite moments of fear and uncertainty, I have remained well while dozens of my family of friends have died. For me, the repetition of loss and grief has been the hardest part of living with AIDS. I moved to San Francisco in 1982 at the dawning of the AIDS epidemic; 12 years later, when I left, it was partly to escape the death and dying, but also to live out my final years in the beauty and peace of the Russian River, a more rural area an hour north of the city.

When I began writing this article, I had a viral load of 238,000. ^* It's a new numbers game for me, but the anxiety associated with high virus low numbers is all too familiar. I have had four counts over the past year, and this last one is the highest. I struggle with what this count really means. From everything I have read and heard, it represents a threatening level of virus in my blood, yet I feel no different physically. Could it be that my luck and good health are coming to an end and that I am finally moving toward the inevitable opportunistic diseases and death? Or will my viral load vary as have my T-cell counts?

I have decided to wait and make a decision about combination therapies until after my next viral load count. This decision has taken some courage: I have had to resist the persuasion of colleagues and friends to jump in and start one of the new drug regimens. I have trouble reconciling the success of these new approaches with my 12-year, antiviral-free survival and my experience watching friends die even after aggressive use of antiviral drugs. I'm open to doing whatever it takes to remain healthy, but I have no sense of what my decision should be or how I will make it.

My first conversation was with Gary,^† an enthusiastic 19-year-old who tested HIV-positive three years ago. As he began to accept his sexual orientation, he came to believe that being gay meant having AIDS. When he came out to his mother, she reinforced this conviction, saying, "Get out, live with those faggots in San Francisco, get AIDS, and die!" Gary's painful experience confirms a sad reality: coming out and adjusting to sexual orientation is no less difficult now than it was when I was a young man in the 1970's, and seropositive gay men (and lesbians) face even greater risks of internalizing a negative self-identity. Testing positive prompted Gary to examine his values, and accelerated his search for an independent identity and life.

Gary distrusts Western medicine, and while his doctor has educated him about his treatment options, he remains unsure about when to start and what option to choose. "Since I don't know what to do, I do nothing." With a T-cell count of 643 and a viral load of 4300, he feels he is doing well and that there is no urgency for him to begin taking drugs.

Gary believes that because he is young, many things in his life are changing and that being seropositive increases the difficulty of establishing career goals and negotiating intimate relationships. He worries that many of his peers who are seronegative are not being safe because they believe that HIV disease is treatable. He knows that he can take these drugs when he needs them, especially if his numbers change or he becomes ill. Still, Gary's attitude has changed: "Two years ago I was doing whatever I had to do before I died. Now I am planning for the future."

Gary's uncertainty about HIV-related treatment may be partially related to his youth, yet I found myself identifying with his reluctance to start drug therapy. Gary looks to me as an affirmative role model of an older gay man and a long-term HIV survivor, and our friendship has bridged the traditional age gap. I recognize the risk of Gary thinking that I have the magic formula for surviving with HIV, and I'm careful to encourage him to find his own answers.

 

Reclaiming Health

Billy, a thoughtful and bright acquaintance of mine now 25 years old, began routine HIV antibody testing when he was 20, always coming up seronegative. In October 1995, that changed. Billy's counselor emphasized that HIV disease was not a "death sentence." But Billy felt shock first and guilt later, blaming himself for not having known better, for having played the risk assessment game and lost. This is a guilt I don't know, being from the generation of men infected before we knew HIV existed.

While Billy had understood about safer sex, he knew no one with HIV disease and was not involved in HIV-related community activities. Billy found a counselor who educated him about living with HIV, helped him gain a sense of control, and offered him referrals to other resources. Five months after testing HIV-positive, with a viral load of 186,000, Billy began taking an antiviral cocktail of zidovudine (AZT), lamivudine (3TC) and nelfinavir (Viracept). Billy believed that this was a "completely logical decision," one he made with very little emotional distress. He worried about having no medical insurance, but found a study that would supply him with the drugs for free and pay for follow-up laboratory testing to monitor his progress.

Billy hates pills and drugs, and is scared by the knowledge that now that he has started drug therapy, he will never be able to stop. "I struggle with this…Sometimes I miss a dose, especially on the weekends when I'm out at night. I refuse to carry a pill box. When I leave the pills at home it psychologically makes me feel like HIV doesn't exist." Initially Billy had problems with diarrhea and wondered whether it was all worth it. But his numbers have given Billy confidence: his viral load has become undetectable,** and his T-cell count has risen from less than 500 to 1,643. This change astonishes me as it is my first experience of knowing someone--whether on or off medications--whose health has improved so dramatically.

Billy believes that because he caught and suppressed HIV infection early, there is a chance he can eliminate it from his body, and this conviction keeps him motivated to take the drugs. He says that it is "weird" knowing that the virus is in his body doing nothing. Billy recognizes that the drugs are not a cure and he still has doubts: "It's really hard because it's all new. When I think about taking theses drugs, it's hard to know that my future will be."

The recommendation of many medical experts to "hit hard, hit early" with combination therapies is disturbing to me. The purpose of this approach is to prevent any damage the virus might do. But unlike Billy, if I do decide to initiate antiviral treatment, I will be hitting "late", having lived with the virus for more than a decade. At this moment, it is incomprehensible to me that I might be able to live virus-free. On the other hand, some theorize that since I am "treatment naïve," never having used any antiviral drugs, I may have an advantage over others who have taken antiviral drugs over the years. It's confusing. Is the fact that I haven't followed medical advice over the years now to my advantage? Why then would I believe medical experts now?

 

Searching for Definition

Dan is an exuberant and outspoken 34-year-old who lives with his dog and lover in the Castro, the heart of San Francisco's gay community. He is currently on disability but is considering returning to work. He tested seropositive in 1990, and three years later, with a T-cell count of 30, received an AIDS diagnosis and disability status. He bailed out of work to enjoy some time before what he anticipated would be a period of decline towards death. Facing his own mortality, Dan felt old before his time. "I let go of the middle part of my life and went into a sort of premature retirement." HIV became the defining element in his life.

Dan is currently taking a triple combination of indinavir (Crixivan), stavudine (d4T), and 3TC and both his energy and his T-cell counts have increased. He embraces the "new treatment paradigm" but finds it represents a difficult adjustment. "If this is going to be a chronic manageable disease for me, then I have to think about managing this disease over a long period of time. There was some measure of comfort in knowing what I was going to die from and having a sense of an imminent time line." Dan wonders how he will reinvest in life after making his peace with death and is challenged by the central fact that "that which I have waited for is not coming."

Dan believes that a "post-AIDS" culture is developing and that this is good. But he wonders what a life of rigorous pill taking will be like for people living with HIV disease. He wants to go back to work, but he is worried about how he will reinitiate his career. Dan had give up the idea of graduate school and was just beginning to explore work interests when HIV caused him to let go of planning and goals. Nonetheless, optimistic about the possibility of living for a long time, Dan is beginning to rebuild his life: "I have been in the land of the dying and the dead, and now my challenge is to rejoin the land of the living."

I wonder if part of Dan's questioning is also that of a man searching for direction and self-definition in his mid-thirties. Ironically, when I was Dan's age, I had been seropositive for two years and was in my second year of graduate school. I too gave up the future I thought this degree might lead to, never completing my graduate studies. I remember clearly a well-meaning nurse telling me at the time that I should not worry, that I had a good three years to live. Dan's reevaluation of his career has caused me to question if I might still have time to complete school, change my job path, and reinvent parts of my own life.

At 50 years old, Jason has lived with HIV disease since 1987, and has focused his efforts on alternative approaches, for instance, Eastern medicine, spiritual healing, nutrition, and stress reduction. When the news of protease inhibitors came out, Jason warned his positive friends, including me, not to be "brainwashed" by the reports.

Recently, Jason began to feel less well, and was shocked to find that his T-cell count had plunged to 120. Suddenly having an AIDS diagnosis, Jason submitted to triple combination therapy. The result has been dramatic: "I feel like a cloud has lifted and that my life force has returned." Jason adds, "The way I see it, at the very least I've chosen short-term improvement over long-term misery…I am confident I'm going to be around for a long time."

I have come to realize over the decade I have lived with HIV disease that a seriously weakened immune system or frightening symptoms often motivates aggressive intervention. While Jason continues to pursue alternative approaches, the ease with which he has incorporated combination therapies into his life has been one of the strongest influences in opening me up to the possibility of taking protease inhibitors.

 

Conclusion

Recent medical advances have changed our ability to manage HIV infection on a cellular level, but it remains to be seen how people will adjust the design of their lives. For many, these hopeful times require a new orientation to life, a reinvention of long-term goals, and an adjustment in one's sense of identity. If we are the generation of people with HIV disease who are to survive, it is for us to redefine living with HIV as it evolves into a chronic manageable disease.

While writing this article, I received a new viral load count: 30,000--a drop of more than 200,000 from my last count. This news came as a shock, nonetheless confirming what has been true all along, that my experience is exceptional even among long-term survivors. When I got the results, I realized how much I had been living with a sense of doom, a belief that this next count would be yet higher and that I would need to begin the drug treatment I so far resisted.

While antiviral therapy is less urgent for me now, I too have begun to see a future that is more open-ended and filled with renewed possibilities. I am beginning to believe that HIV disease doesn't have to be in the way of my dreaming big dreams, that there is time for me to change and grow, that, for the first time, AIDS my not be the final chapter of my life story.

 

Author

Ron Henderson is the Director and Lead Trainer of the Training and Resource Center at the Health Initiatives for Youth (HIFY), a San Francisco agency dedicated to improving the well-being of all young people. His team provides dynamic, interactive training and in-depth technical assistance to people who work with youth. You can contact Ron Henderson at Health Initiatives for Youth (HIFY), 1242 Market Street, San Francisco, California 94102.

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* Viral load is the number of copies of HIV RNA per milliliter of blood. The higher the viral load, the more rapid the progression of HIV disease. Experts debate whether there is any "safe" viral load level below which the risk of progression is minimal and HIV treatment can be deferred. CD4+ ("T-cell") count is not necessarily the best indicator of when to begin treatment, but does indicate the health of the immune system. An HIV-infected person with a CD4+ count of 500 or more is considered to have a relatively healthy immune system.

** An "undetectable" reading means that the concentration of HIV in the blood is too low to be detected by the test. An undetectable result varies from one viral load assay to another; usually, it means that the viral load is below 500. While it is an affirmation of health, it emphatically does not mean that there is no virus in the blood or that a person is uninfectious.

^† The names in this article are fabricated; the stories are true.

© 1997 UC Regents, UCSF AIDS Health Project. Reprinted with permission from FOCUS: A Guide to AIDS Research and Counseling, a monthly publication. All rights reserved. This may not be current and will not be updated. For information: AHP, Box 0884, San Francisco, CA 94143-0884, (415) 476-6430. Profiles of Hope by Ron Henderson appears in FOCUS: A Guide to AIDS Research and Counseling, Volume 12, Number 6, May 1997.

Copyright © 1997-2005 by The Measurement Group LLC. All rights reserved. This may not be current and will not be updated.