Why do I participate in clinical Trials?
Testimonials from study participants
This page contains the individual views and experiences of study participants. The stories below are anecdotal and may or may not reflect scientific evidence, efficacy, or safety of any particular medication or combination treatment. In as much as individuals as well as circumstances vary, please consult with your health care provider before deciding on any changes to your current health care and/or to embark on any new treatment or study.
Many years ago I heard a speaker say that “Hope is born by participating
in hopeful solutions.” As a long term survivor of HIV/AIDS, and years
of mono-therapy, my current treatment options are very limited. Clinical
trials offer the best shot at getting my HIV under control. I also feel good
about the fact that perhaps the information learned from the study may help
other people living with HIV/AIDS, increase our understanding of how HIV operates
and better, safer, ways to keep it in check.
Some people ask me “Aren’t you afraid of unknown side effects?” Because I have a impaired immune system, I do not participate in Phase I studies that study the safety of the medication in humans. As far as side effects, it has been my experience that they usually emerge several years after the drug as been on the market.
Some of the studies I have been in were a bust. Some turned out to provide better, easier treatments for HIV/AIDS. Having lived with HIV for over 25 years now, I think participating in clinical trials, having excellent HIV specialists, and doing my own homework keeps me going.
Nobody gets out of this life alive. When my time comes, I will at least have the pleasure of knowing that I did my best, and, in some small way, my life meant something and the satisfaction of knowing that I have helped others.
(pictured above: Alex during an Ampligen study)
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Today I describe myself as an active woman, mother, wife and friend. I participate in a number of community activities and my life is enriched and fulfilling. By the way, I happen to have HIV.
A year and a half ago, what I saw when I looked in the mirror was the image of a person whose body was disfigured by lipodystrophy.
Beyond making me feel very uncomfortable physically, I was self conscious and embarrassed about the abnormal accumulation of fat in certain places, and wasting in others. I am not “out” about having the virus to most of my friends and neighbors. In the past, I have always tried to take good care of myself. I enjoy exercise and feeling good with my body and being comfortable in my clothes. For me, living with the changes lipodystrophy caused felt comparable to wearing a scarlet “A” (for AIDS), branded on my forehead. I became sad, anxious and withdrawn. During moments alone, I felt scared and hopeless.
A friend told me about a clinical trial in which a medicine called Serostim® was used to help people with lipodystrophy. If I were to be accepted into the HARS* study, I would be able to obtain the medication for free. The directors of the trial would follow me closely, using body imaging to measure fat versus lean body mass before and after. Precise body measurements were to be taken periodically. My reactions and changes, both physical and psychological, would be monitored. I might even receive a small stipend for participating.
I was excited but pessimistic. Exercise and diet had not made much of an impact on this kind of internal fat. In addition, I felt cautious about putting my already compromised health on the line.
I was happy to discover a supportive atmosphere and a professional staff that always treated me respectfully.
I am also pleased to report that Serostim® worked for me. I took it for six months and lost 20 pounds. I have regained my previous body with increased tone. Although I have lost fat, the appearance of my face is less drawn, healthier and full. Currently, I am off of the medicine and so far have maintained both weight loss and improved muscle tone.
Before starting the HARS study, my complaints regarding lipodystrophy were disregarded by my other doctors. It was only after having made this transformation that my primary care physician acknowledged the importance of “quality of life” issues.
Lipodystrophy hits many women very hard. Some doctors are still incredibly unsympathetic to this condition. Women need to get involved in clinical trials. There are far more data from research on men with HIV. Little is known about the effects of hormones on women, whose bodies have different responses and requirements from men’s. In order to improve the quality of lives for our sisters and daughters, it is crucial for more women to participate in clinical trials.
*HARS - A phase III, multi-center, randomized, double-blind, placebo-controlled, parallel group study of the safety and efficacy of Serostim®, r-hGH in the treatment and maintenance of Human Immunodeficiency HIV-associated Adipose Redistribution Syndrome, or HARS, now closed.
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