Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Ferd Eggan

The approved standard of care for the last several years, and the fundamental axiom of medical treatment for AIDS, has been that we should begin on AZT when we reach a certain level of damage to our cellular immunity functions that is, when our CD4s drop to fewer than 500. What has stood as a corollary to this axiom is the hopeful suggestion that AIDS was on the way to becoming a chronic, manageable disease. No one ever suggested it was curable, but there was a faith that soon science would find a treatment that could stave off the devastation HIV could wreak on our bodies. Concorde has shown definitively that we have not succeeded in taming AIDS, and therefore has dashed the hope that most of us harbor the hope that somehow a drug will keep us alive and healthy.

In reality, these last 18 months have seen the deaths of thousands who began using AZT soon after it became available the AZT generation. The Berlin Conference, with hundreds of reports on use of AZT, ddI, ddC, only underscored the infuriating fact that the immense resources of science and medicine have spent the last years fiddling around with the same three antiretrovirals, all of which act in the same way, as nucleoside analogs. There's no data yet on combination therapy, and it's all AZT, ddI and ddC anyway. What drugs are in the famous "pipeline" are not going to be available as treatments for two to three more years.

I hear all of this as depressing news, and I guess a lot of others do too, judging by the number of calls to Being Alive by people who feel despair at the news from Berlin. I also find it frightening. Like everybody, I want to feel secure that medicines will take care of me, at least prevent the really bad aspects of AIDS. But right now, there's nothing out there that will take care of me. I regard the release of the Concorde data as an event as important as the approval of AZT, an unhappy event that makes us all question the cheery scientism of the last several years, and should certainly make the planners of AIDS services re-think the concept of early intervention.

Early intervention remains a goal: Anthony Fauci told his Berlin audience that the unrelenting activity of HIV in the lymphatic system from the earliest moments of infection will necessitate a powerful intervention with antiviral treatments. However, he also argued that treatments to restore immune function will be vital in any effective management of AIDS. He concluded by declaring that such early intervention and later immune restoration was not possible now: "we do not have a safe and effective antiviral."

For several years, the AIDS community has railed at those people who know they are infected yet do not initiate antiviral treatment until they show up at the hospital with an opportunistic infection. There are many in this category, and I think Concorde confirms that individuals who refuse antivirals are not just AZT-paranoids or self-destructive fools. They are acting rationally, based on their understanding of the limitations of available treatments. Some are African-Americans who have never trusted AZT. Some are people who disbelieve that HIV is the sole cause of AIDS. Some are indeed self-destructive, driven by despair. Some simply are not in the circuit of Project Inform, AIDS Treatment News, Being Alive, and the like, where urgency has led many to venture any treatment that is said to have promise. It is not irrational to spend a few years after testing without the rigorous commitment to take pills on a regular schedule or the possible nausea, headaches and malaise that sometimes afflict users of AZT.

All that said, I believe there are some very good reasons for early intervention, but early intervention needs to be re-defined. Instead of banking on antivirals, we should intervene at the appropriate early points for prophylaxis. Very extensive data exist to show that use of bactrim or dapsone or even pentamidine effectively prevents pneumo-cystis, yet 42% of the people who are hospitalized with their first AIDS-defining illness have PCP. Early intervention could prevent that. At fewer than 100 CD4s, many other prophylaxes are appropriate. Being Alive and other publications have charted such prophylaxis regimens several times; check the July 1992 issue of this Newsletter for such a chart. Of course, at my most despairing, I wonder if it's better to prevent PCP only to have a much more devastating and expensive lymphoma later, but that may be another article. Instead, I will state as clearly as possible, dear friends and readers: if you know you are HIV+, follow the state of your immune system by getting T-cell counts and start on prophylaxes for PCP and other opportunistic infections at the points where they become necessary.

There's a second reason for the earliest possible intervention for HIV+ individuals, and that is what I call "getting a life." If we start early, we can better face this life-threatening illness. We can find the support and caring that we need, from friends, lovers, family and from comradeship with others who are in the same situation. When Being Alive first faced ridicule and harsh criticism by calling for early testing and early intervention in 1988, the campaign was, in retrospect, too optimistic about treatment possibilities: "get the facts, don't get AIDS." But nobody claimed we wouldn't get sick or die. They promised that knowledge and support from others would help make our lives with HIV/AIDS more liveable. That is still true, so we should intervene early to get the help we deserve.

For me, the questions are pretty relevant now. Last fall, several doctors suggested I might want to start intervention way early (700-800 CD4s), and with a combination of AZT and ddC at that. I didn't. I had no good critique of early antiviral strategies then, I just thought it was unnecessary. If I'd had 400 CD4s, I probably would have begun AZT and ddC. Now I guess I'd think twice about that, but I certainly would work harder to build support networks out of my friendships.

So the news about AIDS is bad right now. That is reason for sadness, fear and anger, but there is never a reason to stew in depression. I understand depression as a process where we attempt to obliterate grief or rage through internal self-inflicted violence. That won't help us. I think we better express the sadness and fear, and also get mad and actively call for real research for effective antivirals and immune restoration. Groups like ACT-UP were instrumental in getting approval for the limited but useful antivirals we have now. We have to get them and ourselves back on our feet and on the streets if we expect anything better.

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