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Treatment Side Effects and Future Risks
Sep 10, 2003

I question some of your answers where you describe current treatments as having few side effects, although certainly in the long run not taking meds will result in most people infected dieing after the miserable end-stages of AIDS. I have been on treatment since 1987, and I have heard similar claims, from many researcher and clinicians. I now have heart disease, diabetes, extreme hyperlipidemia, and have had appearance altering redistribution, gains, and losses in body fat. It is only fairly recently that experts realized that some of these effects were due to, for example, D4T rather than the early protease inhibitors.

One Yale-trained Infectious Disease physician told me in her office that it wasn't possible that I could not have had a buffalo hump prior to the protease inhibitors being added to my regemin, unless I had Cushings disease. My prior medical records told another story, as did subsequent research. D4T can cause buffalow humps and visceral fat accumulaton. I have also been told that the risks of the PI's were clearly understood. Within a year different data emerged, as did my potentially life threatening--and so far irreversible--complications.

You describe new medicines as having much fewer complications that the older PI's, yet those older PI's are still widely used. And if you think about the logic, it is those PI's with more history, which have better characterized risks and long term benefits.

One of these turned out to be essentially worthless (unless something is done to inhibit its metabolism and elimination from the body, such as taking it with the highly toxic ritonavir. The original formulation of Saquinivir, the first approved PI, was hailed as a breakthrough, based upon the research data used to support it's approval seven and a half years ago. Then data emerged which demonstrated its effectiveness was much, much more modest than the original data, and its bioavailability was only about 2, which was inadequate for a significant clincial effect. There was much discussion about why this data was not known, or if it was, published. It also appeared to have very midle side effects for the most part. The drug has now been reformulated into a form with much higher bioavailability and effectivenes. Not surprisingly, it has many more side effects.

You or any other researcher or clinician will not know the longer term benefits until their widespread use and history provides that type of data.

Here are two other examples which affected me regarding risk and the benefit estimates by state of the art experts: In 1987 I attempted to enter a clinical trial of a therapeutic vacine. I listened to one of the principal investigators--Alexadra Levine--tell a room full of people she was all but certain that the experimental vacine was highly effective, and perhaps a cure for HIV infection, I was denied entrance into the study based on a laboratoy test and told my infection was highly unstable and the prediction was that I would probably rapidly progress to end-stage disease. I was devastated. Of course as you know, the vacine turned out to be worthless, I am still alive and have a t-cell count that bounced between 200 and 500, and most of my significant medical problems are due to the medications. I expect I will die from the treatments, not the disease; but I know I have added many, many years to my life by taking them.

A close friend entered a gene therapy trials program at City of Hope. It resulted in no improvment to his HIV infection, but extensive neurological damage resulting in constant extreme pain for the past six years limiting his mobility and requiring high levels of opiates to treat.

The internationally known researchers in both cases, I have no doubt, believed the risks of their treatments were low nad potential benefits high. Dr, Levine also described her preliminary research a compound which she thought cleared the virus from the body, but was fatal to 80 of the patients! Fortunately it only had a few people enrolled. You are of course familiar with this widely known disaster.

I personally have done (non-medical) academic and coporate research for many years. The personal goals of the researchers and the funding agencies affect early results. Look around any acadmic area, and see different experts, arguing widely differnt positions, only time and more data will end up showing which (if any) is correct. This dialectic is required to advance science. It is how we do it.

Look at the drug companies--who also sponsor much of the research (including some of yours) who show data which they purport that shows their treatments are superior or less risky, than other companies drugs. Clearly they cannot all be right! This is the history of technology and science in our capitalistic society, and for the most part it is not a result of unethical behavior, it is just the nature of the beast. We just don't know until we get there.

About every two years or so, since I myself was in graduate school in the mid 1980's, the general "consensus" about the course or best treatment for HIV has radically changes. I am grateful for the efforts of the research and clinical community, it has saved my life, but it did not save the lives of many people. I have seen it said that only 10 of the infected population would eventually get sick. Then it was 50. I was shocked and dismayed when my doctor told me 90, because I knew what that meant for me. Then it was 100, then 95, then 98--I frankly don't know now, nor does anyone else since HAART has changed the course of the disease in the western industrialized wolrd what that number should be.

Or look at the experts opinions about how risky oral sex is. I expect that risk estimate to continue to change,. I once participated as a panalist expert on risk and oral sex. (I was an expert in statistical anlysis and research design and mental health. An infectios disease researcher presented his data showing that 50 of new HIV infections (as defined by having the flu-like conversion syndrome) were due to oral sex. When asked how he knew that they had only had oral sex, he said because the patients told him so, or told their own personal physicians; and that no one would have a reason to lie about sexual practices to their physicians. The head of the local safe-sex phone counseling program )the third panalist-expert) and I were agahst (as well as not believing the statistic): Everyone lies about sex. I believe that has complicated understanding of the epidemiological data, as certain sexual practices became more forbidden, and thus shameful

When to start treatment, when or if a treatment interruption is safe or even helpful, sequencing of treatment options, MEGA-HAART, treatment selection considerations, treatment tailoring to special populations, treatment of the geriatric population (as significant numbers of survivors age), pediatric treatment, prophylaxis treatment, type of prenatal treatment the general consensus on all of these fundamental treatment issues is either non-existent, or seems to be changing. Some patients do well and tolerate treatments easily. Some people do not and have significant life-style and other health impacts as a result. Some newer and still emerging from the experimental pipline treatments appear to be both affective and have less side effects. But I cannot tell you how many times I have heard almost exactly the same thing, but the truth turned out to be much less positive. Only time will show how well these claims hold up. I think it is more resonsible and accurate to give patients as much information as they can handle, and be aware of individual biases as treatment options are explored and explained with the patient. Even if the claims are correct for a drug, resistance may eventually renderd it clincally useless for a specific patient. Many experts and community activists are concerned that the message that having HIV and taking HIV meds is fairly easy is resulting in rising infections rates. Being of HIV meds is hard, it is getting easier and we have more choices to individually tailor regimens for specific patients. No one really knows the long term risks or the long term benefits of being on these drugs. And alot of what we now think we know, will turn out to be false, or partially false. However, we do know the long term effects of untreated HIV infection.

Some real handholding and dedication to working to tailor treatments to individual patients' needs and the fact that there are many more options, is a more responsible and accurate approach to giving patients information about HIV tretaments, that claiming the current treatments have few to no side effects.

Gregory Griffin, PhD AIDS Patient Los Angeles

Response from Dr. Young

Thanks for your lengthy and thoughtful post.

Contrary to what you've written, I don't disagree with your major points-- there are side effects of medications and significant concerns about the long-term ramifications of medications and/or HIV infection. Sometimes it can be (as it was for lipodystrophy) to assign causal relationships.

It is also important to point out, as you have, about the risks involved in drug discovery. Not everything that looks good on paper (so to speak) turns out to be effective or safe. There are clearly many examples of persons who have had serious investigational drug toxicities while participating in clinical trials. This later point highlights the seriousness of the informed consenting process- a charge that we take very seriously in our office.

Your situation is reflective of what has happened to many (but importantly not all) persons who have been on long-term treatment, particularly those who went on treatment in the pre-HAART era.

I do believe strongly, that medical science has given us more intellegent, safer and better tolerated medications for those who are initiating first time HIV therapies- I trust that you'd acknowledge that these persons might have a different prognosis and clinical trajectory than yours. BY


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