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Further Studies on PML
Mar 18, 2002
Dear Dr. Feinberg,
I first wrote to you in November, 1999 when my brother was diagnosed with AIDS/PML. No one thought he would pull through but he is doing very well today. It has taken him two years to get where he is today and still has a long way to go but I truly believe he will be able to most of what he did before.
Since my brother was diagnosed, I posted about a support group and have heard from many that either have PML or is caring for someone with PML. I recently heard from another person that was caring for someone with PML. We only emailed each other for about week and I was notifed yesterday of his friend passing because the PML spread and he developed lung problems. The only thing I could think of was that could have been my brother.
My question to you is, why aren't they doing more studies on PML? Is there an organization that I could contact? I would really like to see more studies being done and if there is a way that I could help this happen, I would gladly do what ever I can.
Thank you for all your help in the past and for being such a generous person with your time. You are a godsend!
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Response from Dr. Feinberg
There has been research on specific treatment for PML, but nothing has been positive so far. I am best acquainted with 2 negative studies done by the AIDS Clinical Trials Group which is funded by the National Institutes of Health. So at the present time, the best way to treat PML is to boost the patient's immune system through treatment of the underlying HIV disease.
There are many peole in the community who have become advocates and activists for HIV disease and its complications. Such group exist around the country-- since I don't know where you are, I can't tell you of a specific one near your home. But you can contact TAG (Treatment Action Group) in New York City and get additional information from them on treatment and research advocacy.
I am delighted that your brother has done so well, and I am glad that you stuck by him when things looked grim. Stories like yours are the reason we keep doing what we do to improve the care of people with HIV/AIDS. I wish you both continued good luck!
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