Step Perspective, Volume 5, Number 1; A Publication Of The Seattle Treatment Education Project - February 1993
Robert Nielsen

What is important to remember about AIDS is that not everybody who is infected with the disease dies from it. This appears to have been true for every infectious disease in the past, and now there is evidence that there are some people who are successfully living with HIV infection for significantly long periods of time.

Positive and Healthy

In a session on long-term survivors at the most recent AIDS conference in Amsterdam, Dr. Susan Buchbinder, chief of clinical Studies Section at the San Francisco AIDS Office reported that approximately one-third of the gay men who have been closely followed as members of the well-known 1978 Hepatitis B study have not progressed to AIDS, though they are HIV positive and have been so for 10 to 14 years. Thirty-four (25%) of the men had CD4 cell counts below 200, 65 (48%) had counts between 200 and 500, and 36 (27%) had counts above 500. These men, who Dr. Buchbinder termed "healthy long-term positives" comprise an important group for study, and there are a number of theories about why they are doing so well. It is possible that the immune systems of these people react in a particularly effective way to HIV, or it may be that they have some unusual genes that permit them to ward off illness. Or they may have contracted certain strains of HIV that replicate slowly or are less virulent, therefore cause less disease. If it can be determined how these men are able to resist succumbing to AIDS, new methods for treating others might be developed.

According to Dr. Buchbinder, none of the 36 men with high CD4 counts 14 years after seroconversion have been on any uniform kind of popular alternative therapy. "We're not able to identify one particular kind of therapy or intervention that has kept them healthy," Dr. Buchbinder says.

Another study by Fritz Van Griesven of Amsterdam's Municipal Health Service compiled data from individuals in Amsterdam, New York and San Francisco whose date of seroconversion was known. The study suggests that improved survival is linked to younger age and use of AZT with PCP prophylaxis. "After ten and a half years 50% of the men were AIDS-free," states Van Griesven.

In a recent talk in Seattle, Martin Delaney noted that experiments on the blood of long term HIV positive survivors indicated that when exposed to HIV, their immune systems acted as if they had encountered this agent before and had learned how to deal with it. Delaney also mentioned another phenomenon that was addressed by USFC researcher Dr. Jay Levy at the Amsterdam conference: healthy HIV positive people all seem to have strong CD8 cell activity. CD8 and CD4 cells interact, evidence grows stronger that vigorous T8 cell activity seems to ward off the development of AIDS. If this theory proves correct, it could lead to new treatment and prevention methods that enhance CD8 cells. It has even been suggested that CD8 cells from people in early stages of HIV infection might be stored, then infused back into the individual at a later date possibly reactivating a strong anti-HIV response.

Diagnosed Survivors

Also ignored by popular media are those people who have been diagnosed with full-blown AIDS (they've suffered one of the well- known opportunistic infections such as PCP), and yet are living on. Some of these people have lived 10 years after an AIDS diagnosis and are still going strong - meaning they are living happy, productive lives, some still working for wages or as volunteers. So far, no single physical characteristic has been identified that explains why these people survive, though there are some general similarities among them. They tend to rely on conventional medicine with occasional use of alternative therapies. (Combination therapies are still too new to be addressed as a factor for long-term survivors.) They aggressively deal with opportunistic infections, taking medication at the first sign of a problem, or as a prophylaxis.

Psychological Factors

The big area of commonalty among healthy HIV positives and people living and thriving with AIDS is a compelling psychology for survival. Taken from a variety of sources, here is a partial list of these attitudes:

Optimism for the future: feel that good times are ahead. Feel personally responsible for their health; believe they can influence their own wellness. Satisfied with quality of their lives. Believe life is meaningful. Believe that life has become more meaningful as a result of HIV infection. Have dealt with or healed their own emotional wounds, they have good coping mechanisms; don't allow difficult people or situations to get them down. Are involved in life and activities meaningful to them (career, hobby, volunteer work, politics). Participate in fitness or exercise programs. Pragmatic and realistic; take each day as it comes. Don't give in to disease - seek treatment. verbal, talkative; especially when discussing their condition with doctors; good communicators. Want doctors they can trust and expect to be treated as equals, collaborators; will change doctors if not satisfied. Good "medical consumers"; they stay informed about medical developments and assertively demand excellent treatment. Generally not obsessed by CD4 counts. Some have survived other life-threatening of psychologically disturbing circumstances (serious auto accident, loss of parent as a child, etc)

Not surprisingly, most of these attitudes are also found among people who have survived acute conditions other than AIDS, such as cancer, severe accident, injury in combat, or extensive burns. these are apparently the attitudes of human survival - natural responses to any profound challenge.

Lifestyle Factors

Other than good nutrition, regular exercise, and avoiding recreational drugs, not much study has been done on particular lifestyles that may enhance survival with AIDS. There are stories of people who supposedly burn the candle at both ends and still do well, while other people insist that a quiet life is the secret to longevity. Considerable opportunity for future study exists to answer questions as to whether frequent unsafe sex and re infection with multiple strains of HIV accelerates illness; if a particular climate or location helps or hinders disease progression; or if a certain diet or life pattern helps avoid becoming ill.

AIDS is profoundly serious and its effects will influence society far into the next century. However recent evidence suggests that the inextinguishable vigor of the human animal and spirit are at least to some extent, refusing to bow down to this disease. The experiences and physical resilience of long-term survivors will help science learn more innovative ways to combat this affliction, and could lead to its ultimate cure.
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