The Bay Area Reporter - March 12, 1996
Stephen LeBlanc ACT UP/Golden Gate Writers Pool

That the differences exist is hardly disputable. Various research suggests that about 10% of all people infected with HIV will develop AIDS within 2 to 3 years of infection (rapid progressors), about 70% of those infected with HIV will develop AIDS within about 7-11 years from initial infection (typical progressors), and the luckier ones, about 10 to 17% , may not develop AIDS for at least 20 years after infection (nonprogressors). And luck has everything to do with it. It is true that evidence is mounting that good medical care, effective use of antiretroviral therapy, and opportunistic infection prevention (especially for PCP and MAC) will lengthen the lives of those with progressive HIV infection. However, this fundamental difference between rapid progressors and nonprogressors exists in the absence of any antiviral treatment and seems to be determined by the genetics of the person infected and the genetics of the virus strain to which they are exposed, and not to medical care, lifestyle issues, a positive mental attitude, or a belief in miracles.

Emerging answers to why this variation exists point in two directions: (1) some strains of HIV are more likely than others to produce rapid disease progression, and (2) some people's immune system is better able to control HIV, both upon initial infection and subsequently. With regards to the virus, differences in progression have been linked to the presence of certain alterations in the Nef and Rev genes of HIV and to other differences in HIV gene expression. With regards to an individual's immune system, differences in the specific genes that encode the shape and function of a number of different immune system molecules have been linked with different rates of HIV progression.

More than 50 genetic differences (particularly in the genes encoding an important class of immune system molecules known as MHC) that may influence the speed of AIDS progression have been identified to date. Some researchers have theorized that those whose immune systems initially recognize a part of the HIV virus that is less genetically variable will mount a more active immune response to the virus, and the part of the virus initially recognized may be entirely due to chance.

Elevated levels of CD8 cells have also been associated with long-term nonprogressors. Scientists have recently identified three chemicals that CD8s secrete, which may play a role in suppressing HIV. But no one yet knows why CD8 cell levels vary among those with HIV.

Load Value

Whatever the causes of rapid progression, a scientific consensus is emerging that viral load levels are a good, but not a perfect, predictor of whether an individual is a rapid progressor or a nonprogressor. According to one study reported at the antiviral conference in Washington D.C. this January, which examined frozen blood samples of AIDS patients back to 1984, a viral load of 300,000 copies per ml of blood or more is associated with an increased likelihood of progression to AIDS within 1 year, a viral load of more than 100,000 is associated with a likelihood of progression to AIDS in less than 3 years, a viral load of around 30,000 suggests progression to AIDS within 1.9 to 8 years, and a viral load less than 10,000 suggests at least 2.8 to 19 years before progression to AIDS.

Naturally, lower viral load levels are associated with a longer time to AIDS, but it is not yet definitely known whether lowering viral load with anti-HIV drugs will extend AIDS-free time, although data collected to date indicates that it will.

While it is a blessing that many infected with the HIV virus will remain relatively healthy for 20 years or more, it also creates confusion for HIV doctors, AIDS drug researchers, and for the HIV-affected community. Anyone making treatment decisions based on the experience of others must remember that a large percentage of people with HIV would be expected to do well and not progress even with no anti-HIV treatment.

Among those living with HIV today, the percentage of nonprogressors may be even higher than the 10 to 19 % suggested above, because as the epidemic continues many of those who were rapid progressors have died, and therefore the relative number of surviving nonprogressors has increased.

In communities long into the HIV epidemic, the number of those still alive who are nonprogressors may well reach a majority. Therefore, the experiences of your nonprogressing friends or of long-term nonprogressors who hold themselves out as experts on how to survive the disease may have little relevance to your own experience with HIV. Their survival is due much more to chance than to anything they did to remain healthy.

A Prudent Course

This is not to say that an HIV-infected person cannot today significantly lengthen expected survival with effective treatments. Newly available anti-HIV drugs and new combinations have shown a much greater ability to suppress viral loads than therapies available even a few months ago, although their impact on long-term survival has yet to be conclusively proven. HIV-infected individuals must each assess for themselves and with their doctors what treatment strategies make sense, given what seems to be happening with their disease progression. A prudent course would be to adopt treatments that have a proven ability to substantially reduce viral load and reverse HIV disease progression, and to look for confirmation of those effects in a patient's own viral load levels and overall health.

The difference between nonprogressors and rapid progressors also has created a split within the HIV-infected community, evident in the last several years by the growing emphasis in the media on the HIV-positive "lifestyle." One magazine directed at the HIV-affected community recently justified its policy of largely ignoring the sick and focusing instead on the positive-but-healthy by pointing out that many people with HIV will live a relatively long time and remain healthy, which is of course true. Some with HIV have taken to styling themselves as PLWAs (People Living With AIDS) rather than PWAs. While it is important to get the message out that a positive HIV test result for some people is not a sentence to near-term sickness and death, the growing numbers of the healthy HIV-positive and the attention placed on them threatens to overshadow the plight of those who are, all too rapidly and through no fault of their own, dying from AIDS rather than living with it. It also threatens to mislead some HIV-positive people who are not nonprogressors to delay taking action against the disease. Those in the HIV-affected community must not let the emphasis on the positive-but-healthy dampen the urgency we should all feel in the need for access to proven treatments that will delay sickness and death for everyone infected with HIV.

ACTion UPdate

In January 1996, Pharmacia & Upjohn announced an expanded access program for the new antiretroviral drug delavirdine. Delavirdine is a member of a class of drugs known as non-nucleoside reverse transcriptase inhibitors (NNRTIs), which have been shown to be very potent inhibitors of HIV, although resistance develops quickly when they are used alone.

To enter this program, patients should ask their physicians to call 1-800-779-0070. ACT UP/Golden Gate has become aware of some patients and physicians experiencing problems with this program. If you are having difficulty obtaining delavirdine from Pharmacia & Upjohn, please contact ACT UP/Golden Gate at (415)252-9200.

ACT UP/Golden Gate meets every Tuesday at 7:30 at 592 Castro Street. Everyone is welcome.

ACT UP/Golden Gate is not affiliated with ACT UP/San Francisco.
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