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Angst of a

Jul 8, 1998

Hello. My name is Rich. I'm now 38, and I have been HIV+ since October of 1987.

I have never received treatment with antivirals.

My CD4 count has remained within the 1000 range. My viral load generally fluctuates between "undetectable" (which in our labs here in Canada means less than 500 copies) and 1000, only once reaching a high of 3000.

I remain completely asymptomatic.

I somewhat resemble the stereotype of "nonprogressors" in that I actively take good care of both my body and mind through good nutrition, exercize, building strong intimate relationships, and reducing residual stresses through psychotherapy as needed.

I think that many positive people imagine that I must be quite carefree given all of the above. Occasionally I am. But on and off I have a gnawing fear that tomorrow will be the day that my good luck runs out.

Since the protease inhibitors came out, I have experienced this fear more frequently. Many experts feel that I should be on an aggressive antiviral regime, that the healthier I am when I begin treatment, the better. The message that I unavoidably hear in that counsel is that whatever the genetic or behavioral or spiritual factors may be that have protected me from developing AIDS thus far, the probability is that my luck will not last forever. So I should act, based on that probability, and begin treatment.

Lately it seems that there is a bit more reserve in the protease pitch in light of their toxicity and compliance/resistance problems. But not much more.

I am very reluctant to begin any antiviral treatment. I work in a field that although it does not pay extremely well allows me to spend extended periods of time in other countries, which I love. If I were to begin antiviral treatment it would be necessary, mainly for financial reasons relating to health care coverage, for me to remain in Canada, perhaps "forever." It has taken me years to build the kind of life that I now have, and I can't imagine just giving it up when I feel and my lab results say that I am perfectly healthy. It seems very logical to me. But I wish that I had more scientific backup for my position.

The question in all of this I guess is how to achieve some degree of freedom from the message "If you don't do 'X', you'll die," without becoming dangerously closed minded.


Response from Mr. Shernoff

Dear Rich,

You raise some very important issues. But first of all I want to thank you for so generously sharing your story. I am also a long term nonprogressor, but unlike you I decided many years ago to begin anti-retroviral therapy, and currently am on combination therapy that has left me with undetectable viral loads below 20 parts per ml of blood. My CD-4 cells are in the 600-700 range. This has been my basic blood work for over two years now. As best as I understand what is coming out of the Geneva AIDS conference is that many doctors and researchers still believe that to hit the virus early and hit it hard is best. Yet in seeming contradiction to this is the findings that people who do best on the new combination therapies are the people who have not yet been on any anti-HIV drugs.

As an advocate for people with HIV, as a psychotherapist working for over 15 years with people with AIDS and as an AIDS activist I want to completely support the decisions you are currently making. It sounds like you have a realistic balance between understanding the scientific data, the pros and cons of beginning this therapy and the quality of life you cherish. You do not seem to be in nay kind of denial, so the decisions you have made seem to be working for you medically, emotionally, spiritually and life wise. You are a living example of PWA self empowerment, which boils down to being a partner with your health care professionals in your medical treatment, and deciding for yourself what feels right for you.

I think all of us who have been lucky in either not progressing onto full blown AIDS, or who can tolerate and/or benefit from the new treatments live with some of the concerns and fears that you express. In answer to your question I think you are already achieving the right balance. You stay informed. Yet you do not totally empower the professionals to determine what your future will be. It is important for all of us to remember that the physicians and researchers are still very much in the process of learning about this disease and the treatments. I do not believe that there is any one absolutely correct answer to what any one of us should do in terms of treatment. Each of us is an idiosyncratic individual with an individualized body and virus. I hope that you will remain open to continuing to study and consider all of your options. So far it sounds like the choices you have made are the right ones for you. At some point in the future you may change how you think and decide to make different treatment decisions. This is an option I encourage everyone to always explore and revisit, as I do on a regular basis.

Michael Shernoff, MSW

My face is beginning to show signs

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