Being Alive; December 1996
Chris Griffin

It was one thing to hear and read about the "powerful new drugs" when they were in the pipeline of clinical trials: they were just one more thing out there in the future that might possibly (but probably wouldn't) help. One reacted to the "promise" of these drugs with an alloyed mixture of cautious optimism and brutal cynicism, the natural product of years of unrealized expectations. "Until people stop dying, it's all just bullshit" was a commonly-expressed idea. AZT, ddI, D4T, 3TC may have had some minor and temporary impact on viral load, maybe they slowed progression (even this was not totally clear), but they certainly didn't stop the dying.

But now it's different. These new drugs may have problems-they don't seem to work for everyone, some cannot tolerate the side effects, some find the dosing regimen extremely difficult to comply with, they are expensive, millions in the developing world do not (and it is likely will not) have access to them. But the fact is they do work, dramatically, for many people, and that's something we haven't been able to say before. T-cells are rising, viral loads are declining. Almost all of us know someone (sometimes it's ourself) who has experienced an incredible improvement, not only in lab work, but in overall health and sense of well being. (See first person testimony in accompanying article on page 6.) The word "undetectable" has become part of our language. And while people are still dying-I'm sure almost everyone of us also knows of someone who has died during this period of vibrant optimism-the mortality rate, as reported by physicians and hospitals, has definitely declined.

Signs of the Sea Change

There are tangible signs of this sea change everywhere. One Los Angeles hospital (Sherman Oaks) has closed its aids wing because there are no longer enough patients to justify its existence. Another (Midway) is bringing in cancer patients in order to keep the Immune Suppression Unit going. (See related interview, page 8). Hospice beds are going unused: the Chris Brownlie Hospice has closed its doors. Pacific Oaks Medical Group, which only months ago seemed to be voraciously eating up medical practices across the country in what seemed like an unstoppable expansion too ironically parallel to that of the virus itself, is apparently retrenching, closing its San Fernando Valley office. Some doctors report a drop in the incidence of CMV, MAC and KS. (We wonder how many physicians are starting to wonder what all this will do to their practices and incomes.)

Never before in the history of this illness has there been any treatment that has been able to turn an immune system decline around, with any significant degree of success or longevity. At this point there are more questions than answers-how long will this effect last? how soon might resistance arise? are the newly-arrived T-cells functional? why do some people not respond?-but the mere posing of such questions shows how much our world has changed.

In the months ahead this change will provoke a whole series of new and perplexing issues.

So Now I'm NOT Going to Die?

Many people with significantly progressed aids have had to deal prematurely with their own deteriorating health and imminent death. Many of us have chosen or been forced to quit our jobs, retire from professional life, go on disability, cash in insurance policies, etc., all of this done with the expectation that we were not going to be alive all that much longer. We are now faced with the possibility, hard as it might be to believe, that imminent decline and death are not necessarily a foregone conclusion. The words "eradication" and "remission" are creeping into our language. But wait a minute! We have just gone through months and sometimes years of the difficult process of separating ourselves from a "normal" future, of readjusting our sights, of lowering our expectations, of accepting the inevitable onslaught of disease and infirmity with the best spirit we could muster, of learning to project no further into the future than a few months, of organizing (through necessity) our daily experience around the harsh and often painful reality of our illness and impending death. And now, suddenly, we are being handed a whole new game, with different rules. "I realized this week," Michael Monroe, a rebirther for Being Alive recently said to the L.A. Times, "that I have been prepared to die but I'm not prepared to live."

What the F--- Do I Do Now?

If indeed the "promise" of protease inhibitors turns out to be real, many of us are going to have to create whole new game plans for ourselves, a process that could prove as difficult (and fraught with frustration, fear and anger) as that of letting go of life, or of adjusting to the virus in the first place. If it was an arduous struggle to surrender to the reality of one's illness, disability and imminent death, it may be equally arduous to surrender to the prospect of living and all the responsibility that goes along with it.

The Works and the Work-Nots

Already we are beginning to see a splintering of the hiv+ population, into those who do respond favorably, even dramatically, to the addition of a protease inhibitor to their drug cocktail, and those who, for one reason or another, do not. Some experience no benefit whatsoever: perhaps their immune systems are already too damaged, or they've already been on AZT and 3TC or other antivirals for so long that the addition of a protease inhibitor amounts to nothing more than monotherapy, and resistance forms quickly. Or perhaps it's simply a matter of "biology is destiny"-for genetic reasons their systems do not respond.

Others have stopped taking the drugs because they've found the side effects intolerable: nausea, vomiting, diarrhea, kidney stones. Still others are unable to stick to the dosing regimen, and may be already experiencing an elevation of their viral load, signaling that the drugs are failing, that the virus has developed resistance to therapy.

For all these reasons and more, there is a relatively small but growing group of individuals for whom all the hope and promise filling the air right now is but an empty dream. For the moment at least these people have a shot at trying out Agouron's new protease inhibitor, recently become available through an expanded access program (call Agouron at 800.621.7111). And there are a few more promising drugs coming down the pike. But they may prove equally ineffective for these people. Only time will tell.

It's also worth noting that if we start seeing more and more people start to fail on the currently available triple combinations, whether next month or next year or whenever, unless new treatments become available, this brave new world some of us are experiencing will start looking depressingly similar to the old one.

The Haves and the Have-Nots

The splintering of the aids community into those who have access to protease inhibitors and those who do not has already occurred, although most of us in the United States do not feel it or experience it directly yet. As was made perfectly clear this past summer at the International Conference on AIDS in Vancouver, the millions of hiv+ people in developing countries do not have and will probably never gain access to these drugs because of their cost.

In the United States, there are several states where the government-funded assistance programs have not yet added the protease inhibitors to their formularies. At least in California, though, most anyone who has the knowledge, ability and desire to seek out protease inhibitors can obtain them, their cost covered (or partially covered) by private insurance, Medicare, Medi-Cal, the state ADAP (AIDS Drug Assistance Program) or the pharmaceutical companies' own indigent access programs. The key words here, however, are "knowledge, ability and desire." An individual must have become aware of his/her own hiv status and possess the knowledge that a treatment exists which most likely will help; the ability to find those physicians or agencies or programs that can help provide access to the drugs; and the desire to know, to get tested, to proceed with a course of action.

Most of the good news about protease inhibitors emanates from the major metropolitan areas, from populations made up predominantly of gay (and mostly white) males, where aids research and clinical practice are at the cutting edge and where educational efforts have sufficiently permeated the community so that individuals are participating in their own care. Other segments of the population may be less fortunate. IV drug users, non-English speaking immigrants, the poor, the African-American and Latino communities, where there has long been religious and/or cultural resistance to speaking about aids-for a variety of financial and societal reasons, these populations may be less knowledgeable about hiv and less motivated to get tested or seek treatment. Unless outreach programs redouble their efforts to reach these other populations specifically, it is unlikely that they will in any way benefit from these new treatments, creating in essence an entirely separate yet parallel (and even invisible) aids community for whom these new scientific gains remain unimagined, unsought and therefore irrelevant.

Mobilizing Against Denial

In order to begin grappling with this issue, a group of black leaders from government, religion, academia and medicine held a conference at Harvard last month, geared toward mounting a campaign against aids. "In part because of a traditional homophobic tendency in our culture," said Henry Louis Gates, chairman of Harvard's Afro-American Studies Department, "in part because of ignorant stereotypes about hiv and aids, our people, our leaders, our culture, have long been in denial about aids in the black community."

The Harvard AIDS Institute, as reported in the New York Times, projects that by the year 2000, more than half of all aids cases in the U.S. will be among blacks. By the same year, a black person will be nine times as likely to be diagnosed with aids as someone who is not black. The Conference urged a commitment to prevention and educational outreach programs within the black community, where there is still "a taboo against talking about" aids, and called upon government on all levels, as well as charitable organizations, to do more to deliver funding to fight aids among African-Americans.

Throwing Caution to the Wind

Another issue that will need more attention as time goes on is the false sense of security that the new drugs may confer on people, who may delude themselves into believing that the virus is no longer a killer, that treatment exists if one becomes infected, that safer sex guidelines need not be adhered to. Those of us old enough (and alive enough) to remember the early seventies know just how much a deterrent to sexual activity the threat of a communicable but treatable disease like gonorrhea or syphilis or crabs is-none. In our hormonally-directed wisdom, we knew that if we got it, we could get rid of it. A version of that fantasy, unfounded as it may be, might now creep into the community at large. Education and prevention efforts must not let up their guard.

Less Sexy, Less Focus

Crude as it might be to say so, as aids becomes less a disease of gay white men and more a disease of the poor, the marginalized, and the disenfranchised, it will become, in the vernacular of our highly commercialized celebrity culture, less sexy. It will take concerted effort to keep the disease in focus. People and Entertainment Weekly may not be so eager and willing to spotlight the disease as the Hollywood version of the epidemic tapers off.

Something Rich and Strange

Despite all the new difficulties and challenges that lie ahead, it is certainly appropriate to take this time right now to celebrate the emergence at last of treatments that hold out significant and real promise. And the good news keeps arriving. Researchers have been concerned that even though triple combination can lower the viral load in the bloodstream to undetectable (below 200) levels, the virus could be hiding (and perhaps replicating) in various body tissues-tonsils, lymph nodes, spinal fluid, semen. Just this week, a new study out of Amsterdam reveals that after six months a combination of AZT, 3TC and ritonavir eliminated all detectable levels of hiv, not only from the bloodstream but also from tonsil tissue. A separate study shows that a combination of AZT, 3TC and Boehringer Ingelheim's drug Viramune (nevirapine) had a similar impact on hiv in lymph tissue. This is startling and heartening news which lends credence to the "eradication of the virus" theories.

We are indeed living in exceptional times. For those of us lucky enough to be experiencing this renaissance, the world may indeed look brave and new. In the first act of Shakespeare's The Tempest the sprite Ariel, hearing that a man's father has drowned at sea, sings:

Full fathom five thy father lies.

Of his bones are coral made.

Those are pearls that were his eyes.

Nothing of him that doth fade

But doth suffer a sea change

Into something rich and strange.

His song describes the transformation of the dead man's body by the sea, but is also a metaphor for the psychological process of accepting, surrendering, yielding to the reality of one's own humanity, mortality, and inevitable death.

Many of us in the aids community have gone through our own personal sea changes, emerging with transformed eyes of pearl and bones of coral, and inhabiting a world which, despite the intrusion of tragedy and pain, is indeed rich and strange, and we find ourselves unable to imagine returning to the world we inhabited before. As we move into this new era of aids treatment and the hope of a prolonged life, our challenge will be to bring to the responsibilities of living all the power and wisdom our own sea change has wrought. It could be a most interesting time.

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