The Bay Area Reporter - October 6, 1998
Don Howard, ACT UP/Golden Gate Writers Pool

Levy is not alone in questioning when to start HIV treatment. People with HIV have been asking themselves the same tough question since treatments first became available more than two years ago.

More questions than answers

Those who have chosen early treatment ask: Did I start HIV treatment too early? Will I become resistant to all the anti-HIV drugs before I even need them? Will I diminish my immune response to HIV by taking drugs? Will the drugs destroy my internal organs and my looks?

Those who have waited to jump on the drug bandwagon wonder: Have I waited too long to get my HIV under control? Will it be become harder to reach "undetectable" the longer I wait? Is HIV further damaging my immune system each day I wait to start treatment?

Everyone with HIV is asking: can't anyone tell us the best time to start treatment?

Unfortunately, no. And, it's not clear that there is one best time to start treatment for all patients. Levy raises important questions but provides more speculation than real answers. His commentary contained no new hard data for people making complex treatment decisions. Without real data from scientists like Levy, you and your physician have to develop your own personal treatment strategy based on both the stage of your HIV infection and your long term treatment goals.

Stage of Infection

In a very simplified model, HIV infection can be divided into three stages: acute infection, asymptomatic infection, and symptomatic infection.

Acute infection is considered to be the first six to 12 months after exposure to HIV. Many scientists believe that it may be easier to suppress the virus with treatment during the first months of infection. The UCSF study of treatment of acute HIV infection (Options Project- (415) 502-8100) has seen nearly 100 percent of their patients achieve undetectable viral loads within 12 weeks of starting treatment.

Other scientists have been testing theories that very early treatment may preserve some key immune system functions (e.g. HIV-specific CD4 responses) which have been seen in many long-term non-progressors. Overall, many scientists would agree that treatment during this window has a scientific rationale.

Asymptomatic infection is the period after initial infection but before symptoms (such as increasing viral load, lower CD4 levels, and opportunistic infections) occur. This is the period where many scientists disagree on the wisdom of beginning treatment. Scientists who favor treatment believe that HIV causes a steady destruction of the immune system, and waiting to control the virus will only result in a weaker immune system. Others who do not favor treatment believe that it may be wise to wait until the immune system begins to fail or until we have better drugs and better data about the best way to treat HIV. In his recent Lancet commentary, Levy voices his concern that treatment during this window may exhaust treatment options while diminishing the immune system's natural response to HIV.

Symptomatic infection is when CD4 levels fall (some use an arbitrary cutoff of 400 or 500 CD4s), viral load rises (again arbitrary cutoffs of 10,000 to 30,000 have been used) or opportunistic infections occur. When the virus can be controlled in this stage with anti-HIV treatments, studies have shown increases in CD4 levels, fewer infections and a lower risk of death. Most scientists agree that it makes sense to use drugs during this later stage of HIV infection.

Treatment goals

Commentaries like Levy's fail to mention that patients also need to consider their long term treatment goals in their decision to begin treatment. Is the goal to suppress the virus as long as possible, to minimize toxicity from treatments, to set yourself up to stop treatment someday or something else?

Longterm viral suppression is the implicit goal of most treatment strategies. Most people on treatment follow their viral load closely and consider being "detectable" as treatment failure. In fact, studies have shown that those with lower viral loads survive longer. Studies also show that the best predictor of long-term viral suppression is achieving undetectable levels.

However, if longterm suppression of the virus is the goal, then it isn't clear whether early treatment is the best choice. On the one hand, many people believe that early treatment has a better chance of bringing the virus to undetectable levels. But, studies have shown that low level replication of the virus probably continues even when it is undetectable in standard tests. With continued replication, there is a risk that early treatment will result in early resistance to the drugs and fewer long term treatment options.

This being said, there are many people who have remained undetectable on a single combination for more than two years. The purists even argue that if you only get one shot the best strategy for maintaining viral suppression is to start treatment early and to use more than the conventional three drug combination.

A different strategy, such as minimizing toxicity from treatment, may argue for later treatment. Emerging side effects, such as body shape changes and the potential for heart disease from elevated lipid levels, are compelling arguments to wait as long as possible to start taking drugs. Studies are being planned that may show which treatments (and which treatment strategies) minimize long term side effects. If the drugs are going to cause damage, maybe it makes sense to only use them when you really have to. Those who disagree with this argument point out that side effects are worse when the body and the immune system have already been damaged by living with HIV for a long time.

Stopping therapy is, perhaps, the most controversial strategy. After the International AIDS Conference in Vancouver two years ago, premature theories about HIV eradication led many to believe that treatment might be stopped after several years if all the infected viral compartments burned out. Since Vancouver, eradication theories have been largely dismissed because very long-lived viral reservoirs have been discovered.

However, new theories discussed during this year's Geneva AIDS conference propose that, through early treatment and/or vaccination, the immune system may be able to control the virus without the assistance of anti-viral drugs. There are a handful of cases where this appears to have been achieved. This argues for early treatment and possible therapeutic vaccinations to put yourself in the position of stopping therapy if these theories prove to be true.

So what do you do?

In the absence of good scientific data, how do you decide when to start treatment? You educate yourself about your options. You speak with people you trust including your doctor, patient advocates and your friends. And you make a decision that you can live with that considers both your stage of disease and your long term treatment goals. Until we have more data and less speculation, you have to make the ultimate decision and live with the consequences.

Note: Visit the Project Inform website for an excellent response to Levy's Lancet commentary (www.projinf.org). t

Body shape changes and lipodystrophy community forum

UCSF metabolic researchers answer your questions

October 19, 1998 7-9 p.m. Metropolitan Community Church 150 Eureka Street (between 18th and 19th streets)

Sponsored by ACT UP/Golden Gate and the UCSF AIDS Research Institute.

For more information call ACT UP/Golden Gate, (415) 252-9200.
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Always watch for outdated information. This article first appeared in 1998. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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