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Subjects in this issue:
Viramune correction
Liver transplant
New-fill
Viramune correction
The 9th Annual HIV Drug Guide (January/February 2005) incorrectly stated that Viramune is taken as one 400 mg tablet once a day. Viramune is only available in 200 mg tablets. Also, while it has long been commonly prescribed to be taken once a day (as two 200 mg tablets), that dose has not been approved by the U.S. Food and Drug Administration. The approved dose is one 200 mg tablet, twice a day. Positively Aware apologizes for the oversights.
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Hi, George,
I felt inspired to reach out to you after I read your article [Waiting for a Transplant—One Man’s Story] in the May/June, 2004 issue of Positively Aware.
I’m a 48-year-old white female in New Jersey, and have been a sober member of A.A. since April 1991. I owe my life to that fellowship, which drastically changed my life and gave me freedom from the drugs and alcohol that had been killing me for a very long time. I was diagnosed with HIV in June 1993. It’s been a trip, to say the least. I was hospitalized twice with pneumonia, the first HIV-related in ‘97 (when I had two T-cells!) and the second not HIV-related in June 2001. Both of them were bad, but by the grace of God, I made it through and am okay to talk about it today. My last T-cell count was 318 and my viral load has been undetectable for a couple of years. I’ve been on meds since the first hospital visit in ‘97, and believe me, they’ve taken their toll on my body with lipodystrophy. I hate it, but I have to accept it and be grateful I’m alive and relatively healthy.
To add to the difficulties of living with HIV, I found out a year ago that I have hepatitis C. That really floored me. I never put a needle in my body, nor have I ever had a blood transfusion. I didn’t think one could get hepatitis from sex, but obviously I was wrong. Anyway, I have it and it’s scaring me to death. After living all these years with HIV and coming to believe that I can live a long life, I feel like the rug has been pulled out from under me. The first viral load was 760,000, the second went up to 1,530,000, and the third one (two months ago) went down to 1,100,000. My liver functions that show up on my regular labwork are fine, but my doctor says that the only way to know if there’s liver damage is to do a liver biopsy. She also tells me that eventually I’m going to have to do the treatment (the interferon thing), but I’m nowhere near ready. I’m scared to death of it. I’m scared of the treatment (because I know so many people who did it and got so terribly sick), and I’m scared not to do anything and run the risk of liver damage which can eventually lead to cirrhosis. I love my doctor, everything she’s ever guided me to do has been good for me and worked well…I really do trust her, I’m just scared. I have a new fear now that it’s not the HIV that’s “going to get me,” it’s probably the hepatitis.
Sometimes I feel like it’s all too much, and sometimes my faith instills in me a strength that tells me that I can get through anything…that I need to trust God and take the right actions. These last few weeks, however, I’ve been experiencing a lot of fear and sadness. I just want it all to go away, but that’s not going to happen. It’s here, and it’s real. I know you understand…you’ve been through worse than me, yet you made it through. Thank you for the hope you gave me. You and so many people like you are my heroes.
Thank you, and God Bless,
Debbie, via the Internet
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Dr. Berger:
I came across an article that you wrote for Positively Aware in late 2001 [see The Buzz, Sep/Oct 2001] about the product New-Fill. I have a couple of friends who traveled to New York (Dr. Frechette) about 24 months ago for the treatment with amazing results. There is a clinic here in Atlanta conducting the procedure with the product under the name Sculptra. Unfortunately, since FDA approval, the Sculptra product and treatment is about three times the cost of the New-Fill treatment.
Do you know where I can obtain New-Fill at the lower cost? Is there anyone in the U.S. still using New-Fill, or can I obtain it from a buyer’s club? I thought about contacting Dr. Jorge Tagle or possibly someone else outside the U.S., do you have any suggestions?
I am now ready to get this treatment (I estimate probably four treatments), but I am outraged by the cost since FDA approval. (If I obtain the treatments in Atlanta the total cost will be at least $6,000.) Your assistance would be greatly appreciated.
Bill Atlanta, Georgia
Bill,
I agree with you about the dramatic and outrageous cost difference—the pharmaceutical company should understand this is generally for use with HIV-positive patients stricken with a problem, and not for cosmetic use or higher-end affluent patients. But this would be expected here in the U.S. Jorge Tagle or direct from France may be less costly. Also Dr. Ken Stein in Chicago may be less expensive. (Editor’s Note: see News Briefs for information on Sculptra patient assistance.)
Daniel S. Berger, MD
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