Tuesday, July 27, 2010

An AIDS Patient Quits his Drugs

Dr. Tae-Wook Chun, from NIAID, in Vienna, 2010

One Patient's Story Illuminates a Whole Situation: 
Information and Commentary

Tae-Wook Chun,  a researcher at the National Institutes of Health's National Institute of Allergy and Infectious Diseases, gave a fascinating talk at the Vienna HIV reservoirs workshop. He had a patient who had been HIV+ for almost ten years, was being treated using HAART (Highly Active Anti-Retroviral Therapy) and had the lowest viral load ever recorded in Dr. Chun's lab. The patient had rarely ever even had a viral blip (a shortlived increase in viral load). Chun was using special tests to monitor the patient's viral load that are much more sensitive than the viral load tests many people with AIDS receive in their doctors' offices. Even with these sensitive tests, this patient's viral load was tiny, tiny.  The patient had been treated aggressively and early in his HIV infection ten years before.

The patient decided to quit his AIDS drugs.

Consensus: Treatment During Acute Infection = Small HIV Reservoirs

One thing that has come out of the "Toward a Cure" HIV Reservoirs Workshop in Vienna is a consensus that if people are treated for AIDS with HAART early after they are infected, especially during acute infection (2-4 weeks after they are infected, when they get flu-like symptoms), they develop smaller viral reservoirs than people who don't begin treatment until later. So that's less HIV to get rid of later.

Which is great if you live in New York or Paris and don't mistake your acute HIV infection for the flu. But if you don't realize you have HIV, or you're in denial, or if you live in subSaharan Africa or India or Florida or any other place where treatment is hard to get, good luck. This finding does not help you.

Anyway, this patient with an incredibly tiny viral load stopped taking his AIDS drugs. And  stayed near HIV-free for 50 days. And then the HIV-infected cells, which still existed in  small numbers somewhere in his body, started to divide. The amount of HIV in his body started to increase.  He had to start his AIDS drugs again.

At this point in Chun's telling of the story of this patient, another researcher asked the question: The patient was doing great for ten years. I wonder how much his viral reservoirs increased when he stopped the drugs?

A good question. Some day we hope to know how quickly the virus escalates in reservoirs when a patient is taken off AIDS medications.

Patient Risks and AIDS Cure Research

But we also say: The patient knew that when he stopped taking his AIDS meds, the HIV could return in force. Yet this will be the acid test that will determine whether any patient is cured. This was the test that the Berlin Patient passed (see a previous post; we will also discuss the case of the Berlin Patient again in the future).  Either the patient must be taken off his or her drugs, or researchers must develop a clinical marker that shows whether or not the patient's body is HIV-free or is controlling the virus without actually having to risk stopping the drugs.

For cure research to be successful--and ethical-- patients need access to clinical trials. They also need truly informed consent that educates them about the risks and dangers of such research. Strong Institutional Review Boards (IRBs are ethics boards for the hospital or research center where the research takes place) are essential, and so are strong Community Advisory Boards. Some Community Advisory Boards have turned into social clubs for low-income people with AIDS, aided and abetted by the very institutions they are supposed to advise and regulate. This is even true for a few Community Advisory Boards associated with major US research institutions. But the stakes in AIDS research are very high, and people with AIDS  need and deserve much better safeguards for their lives and bodies. If you are not sure which type of Community Advisory Board is monitoring your institution's research, quietly sit in on a meeting, or better yet, ask a friend to.

The bottom line? Patients want a cure. They deserve to know which studies are focused on finding one, and have the option to participate in well-designed and ethical studies that seek a cure for AIDS.

AIDS cure studies should not be taken off the table because a researcher or IRB presumes that patients will not want to participate because, for instance, it might entail a brief period of less than standard of care. Many more people with AIDS may be willing to participate in the effort to find a cure than the research community imagines--if they know that is the goal.

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