Michael E. Holtby, LCSW, BCD
Originally published in Colorado's AIDS Newsletter, Resolute!
Not to be reprinted without the permission of the author
The media is touting the new developments in antiviral HIV drugs as The Cure. The Rocky Mt. News headline on July 12th was: "Drug Combo Eliminates AIDS Virus". An infectious disease doc recently told me with great enthusiasm, "I can now give my clients another ten years!" And we have all heard accounts of zero t-cells and a half mil viral load that the triple combination of AZT, 3-TC & Crixivan have totally turned around. It appears that the days of a manageable illness compared with diabetes is here for HIV.
But my clients, most of whom are long-term survivors, are viewing these
developments with caution and mixed sentiment. Some of the reason is historical.
At the first of the epidemic the prognosis was eighteen months. People typically
discovered their status only when they were in the end-stages of the disease.
Then came AZT, and the advent of hope. In those years, as well, was the Live
Right-Think Positive philosophy of the late eighties and early nineties.
The AIDS, Medicine & Miracles Conference was started in Boulder with keynote
speakers like Louise Hay and Bernie Siegel. A wave of optimism existed on the
belief that HIV was a life-threatening illness, but you didn't need to die from
it -- if you followed a regimen of meditation, exercise, blue-green algae,
mushroom tea, tree extract, vitamins, and most of all didn't allow yourself the
luxury of a negative thought.
At that time it was heresy to talk about dying. The trouble was, we all knew
people who were. It was true that some of those were the ones who "gave
up", and watched Oprah until they died. But it was also true that an equal
number were dying who worked out, gobbled hundreds of dollars of vitamins, and
ended up feeling guilty that they weren't doing it right enough because they got
And then came the 1993 crash of the Concorde Study results. The statistics
were incomprehensible. AZT, far from being the miracle drug we initially
thought, was a short-lived fix that didn't necessarily prolong life. I recall
that this was followed by a period in which Martin Delaney from Project Inform
had nothing new and promising to report, and although other anti-virals were in
the pipeline, t-cells continued to drop.
For the past three years many of my clients have viewed it as denial to talk
about surviving the epidemic. They have psychologically prepared themselves to
die, and lived their lives on the premise that they only had a few years left.
The majority have gone on disability, as they have watched their t-cells dip
below 200 and fought with fatigue. But many of these men also found a peace and
contentment in the immediacy of their demise. As one said, "Its not how many
years you live, its how much life you put into the years you have." With this
adjustment has come a very different view of their identities, their life
purpose, and their sense of priorities.
If this is truly the end of the epidemic, these men will have to go back to
work. A few are already considering it. Some have disability insurance which
doesn't last beyond a set number of years. And of course, a certain level of
disablement is required to continue to not work. A concern exists that the
overly hopeful views about the latest drugs may cause a premature change in
public policy. It may be that the criteria for HIV disability will change, and
the eligibility bar will be raised several notches. On a similar vein is an
apprehension with what the implications will be for public policy related to
AIDS funding. If it becomes commonly believed the epidemic is over, would it
mean a shifting of public concern and money to other more "urgent" causes?
In the final analysis, my clients would love to have a life of natural
length. But after years of living on the edge it is difficult to back off the
precipice. They fear it will mean losing what they have gained about how to live
from facing dying. Will they go back to life like the rest of us, where we
fritter away our time with trivia and mind numbing corporate slavery? Many of my
clients were high powered professionals, who now would prefer to be gardeners or
community activists rather than CEO's. After years out of the work force, on a
completely different path, what will be the impact on these men of such things
as the average work week growing from 40 to 50 hours? The employment treadmill
has only gotten faster with the advent of downsizing, faxes, computers, and
And then there is the fear of false hope. There is little hard data to
suggest The Cure has been found. Although the protease drugs have been
initially very helpful, what evidence is there that -- like AZT before it -- the
benefits will be time limited? The real danger is that the ever clever virus
will mutate, and become resistant -- even to combination drugs. Saquinavir
already has shown the risk of inviting resistance which can render all protease
interventions useless. An AZT resistant strain of HIV may also make combination
therapy ineffective. And then there are the unacceptable side effects, which
make Ritonavir untenable in 2 out of 3 of those I know who tried it. Also
protease inhibitors have so many interactions with other drugs, two of my
clients have had to discontinue their antidepressants. As Project
Inform has observed: protease inhibitors may be a great leap forward, or
just a footnote. Is it possible that our physicians are so tired of the sense of
helplessness as they watch their patients die, that they are too quick to jump
onto the bandwagon of optimism?
And so it is with justifiable caution that my clients face an uncertain
future. They have adjusted to dying, and live fully as a result -- probably more
fully than the rest of us. But can they readjust to the land of longevity? And
will it mean that they are deadened as a result? Or is the promise of protease
inhibitors only a cat nap from the nightmare of a relentlessly progressive
COMMENTS ON THIS COLUMN
From Ken Lichtenstein, MD:I have no illusions about the protease inhibitors. This article is excellent. I think that at best, the protease inhibitors will add 3-5 years to life. What is most impressive is the dramatic improvement in the quality of life brought about by these medications. The hope lies in the added time that will permit those individuals infected with the virus to try even newer and more advanced technologies and therapies.
From Ken Greenburg, MD:I agree with you that "The Cure" is NOT here, however our patients' quality of life is improving with our current regimen of meds -- the length of this improvement and quality of life is yet to be determined. HOWEVER, this is the first time in this disease that we are offering hope for our patients.
From Michael Shernoff, MSWHIV therapist in NYC and Editor of the National Social Work AIDS Network Journal:
This is a timely article and one whose clinical ramifications I am
already dealing with. Two patients just reported that since the new meds. they
are no longer able to justify permanent disability. So they are contemplating
returning to work after being retired for several years.
Another issue that has just begun to emerge is two men who now have no detectable viral activity asking do they still need to practice safer sex? My response was a definitive "yes," because they could still reinfect themselves with another strain of the virus they may be treatment resistant to a drug they have not yet tried, and no viral activity does not guarantee no virus present in semen. So people desperately wanting to believe in a cure, are confusing the reality of where, in fact we are, with these newest treatments.
Last messed with November 15, 2001
Copyright(c) 2001 Michael E. Holtby, LCSW. All rights reserved.