I WANT MY FACE BACK
I was especially pleased with “Lines Composed in a Looking Glass” [September 2002]. I am already experiencing the effects of lipodystrophy after less than two years on my current combo, and I am terrified that my face and body will disclose my status before I ever have the chance to. More important, I have seen a noticeable amount of fear in my parents’ and siblings’ faces when they look at me. It was comforting to realize that I am not the only person dealing with this—it makes me feel a little less trapped in this small town full of small minds.
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I just finished reading “Lines Composed in a Looking Glass.” I have been HIV positive since 1994 and thought I had it all figured out. Yet over the last year or so I have been struggling with feelings I was unable to verbalize and understand. Never has an article touched me the way this article did. As I read it, I started crying and had to stop reading several times to wipe away the tears. It was as if a light bulb went off in my head. My sincere, heartfelt thanks to the writer.
In over a decade with HIV, I never seriously considered suicide…until I lost my face. People need to know that there are safe and permanent alternatives to looking ill with a “trick or treat” appearance. At www.houstonbuyersclub.com are photos of my face in December 2001 and six months later. The product (Bio-Alcamid) used to fill in my hollows is permanent, although it could be removed. It is not approved in the U.S., so I went south to have it done. My wish is that all with sunken faces will have theirs returned to “normal.”
I suffered severe facial wasting for three years, probably thanks to protease inhibitors. Since my New-Fill injections, I can highly recommend the product. The reason our government banned it had nothing to do with safety or efficacy—rather it had to do with government deciding what treatments are not appropriate. If someone can afford to make the journey to Tijuana, it is well worth it. The clinic was spotless, the doctors were knowledgeable, and the product works. While my face was never “all that” to begin with, I am grateful to the buyers’ club DAAIR (www.daair.org) for helping me reclaim my face.
POZ responds: Although European studies found no safety problems with New-Fill, the FDA says it blocked imports of the product due to a lack of long-term data and possible harmful side effects [See “Feds Nix Lipo Fix,” POZ, January 2002].
In my doctor’s office, I see people with various side effects. It’s a numbers game, I conclude. If the numbers are good (T-cell count or viral load), that’s all that matters, right? It’s like a drive-through clinic: “Yes, I’ll have a humpback with a side order of lipo, and hold the facial wasting.” Are we the picture of health? We may be prolonging our lives with enough drugs to back up a sewer, but when will the dam break?
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PROTEASES PROS AND CON
POZ does a disservice to its readers by painting protease inhibitors (PIs) with a broad, accusatory brush—and risks fueling a cynicism regarding HIV care that is undeserved [“The Problem With Protease,” September 2002]. To say that mistakes were made in the mid-’90s ignores the utter state of emergency we were in. People were dying, and fast. At the time, several large clinical trials demonstrated dramatic differences in progression to AIDS and death justifying the use of PI-based regimens. Such robust data did not exist for nevirapine. As to whether we started therapy too soon, one only has to look to current debates regarding timing of initial HIV therapy to imagine how many would have died while we waited for the results of the long-term comparative studies you suggest.
Data indicate that PIs are hardly the sole cause of lipodystrophy. For example, the majority of Cathy Olufs’ side effects were very likely at the hands of ddI and d4T, not her PI. As a result of this PI-bashing, patients are stopping their PIs even when it is unclear they are the cause of their problem. I have treated patients who developed serious opportunistic infections after discontinuing HAART.
I am no apologist for the PI manufacturers—by their nature they are interested foremost in profit. But the world is a better place for protease inhibitors. I feel strongly that the women and men who prescribed PIs when data on alternatives were limited did so correctly and saved countless people from suffering and death. I only hope we will be kinder to ourselves when we discover all the “mistakes” we are making right now in our urgent fight against an unprecedented infectious disease.
AIDS Research and Treatment Unit
University of North Carolina,
When the famous mountain-climbing Crixivan ad appeared in magazines and subways everywhere, I could not understand why people were so enraged, especially since I had just climbed a mountain too. The inspiration from that ad helped me go forward.
Then, two and a half years ago, my doctor and I agreed that I could take a break from HIV meds. I had reached my last straw in underwear emergencies, and had not been sick. Immediately upon stopping medication I felt better, in the same way as after starting my protease cocktail in 1996. For the past year, I have had zero T cells. My doctor attributes my absence of illness to a strong number of B cells. I have often said that these drugs saved my life, but during my first six months of treatment I was on placebo. My dedication to my body and my spirit is what saved my life.
New York City
I do not agree that parents should be forced by courts to put their children on HAART [“Parent Trap,” September 2002]. It is neither in the parents’ nor the children’s interest. No parents in their right mind with the right information will allow their children to be given those highly toxic drugs. How many disabled children is the Western world ready to make? Please leave those good parents alone.
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Forced HAART for any individual, parent or child is a gross violation of health freedoms and freedom in general. I am not HIV positive, but forcing toxic treatments with unproven health benefits on a person—regardless of age—is not just a crime against the individual but a crime against humanity. No one who loves their “freedom” should accept this police-state mentality!
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“Parent Trap” failed to mention any HIV positive mothers who defy conventional HIV drugs and give birth to negative children. You also forgot to mention Kathleen Tyson, who nursed her [still HIV negative] daughter for three years. And Valerie Emerson’s son Nikolas, who healthfully outlived dire predictions of what would happen when he went off meds four years ago.
All those glossy pictures of smiling, medicated people riding their bicycles take up a lot of room in so thin a magazine. Your magazine is a vehicle for the drug companies’ relentless pursuit of profit at the expense of human lives. Educate yourself, and stop glamorizing HAART. Show instead the man with the enlarged liver riding his bicycle. I’ll bet you he won’t be smiling.
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POZ responds: A closer glance at the September issue’s many testimonies to the ravages of drug side effects will shed light on the question of this magazine’s so-called glamorization of HAART. On the other hand, POZ has never put forward the idea that HIVers should abandon antiretrovirals, which have proven effective against HIV and to which many in our community owe their lives.
I have faced many of the same dilemmas Brad Peebles faced with his late colleague Stephen Gendin [“Publisher’s Letter,” September 2002]. The anger, gratefulness, caring and fright are emotions we all feel. It’s easy to see how we as HIVers can feel guilty and sad about our lost friends and co-fighters against this disease. Peebles’ letter was refreshing. It confirmed what I knew deep down—I’m not the only one who feels this way, and it is OK to have these feelings.
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AN INDUSTRY INSIDER UNLOADS
My first thought upon reading “The Problem With Protease” [September 2002] was, “Who will POZ be pointing its hindsight-enhanced fickle finger of fate at in five years?” In its revisionism, POZ implies that it is smarter than the rest of us, and that’s just plain annoying! Entirely missing from the article is the community’s very active role in the protease-inhibitor feeding frenzy—the outcry for expanded access, the cozy relationship between activists and the inner circle behind the PI revolution. Five years ago, everyone was working with the same incomplete information. Industry, community, researchers, policymakers and HIVers collectively came to a nearly unanimous conclusion—that PI-based triple therapy was the right thing to do. Were they entirely right, entirely wrong or something in between? I contend it’s the latter.
POZ seems to be saying time has shown NNRTIs such as Viramune (nevirapine) to be better initial HIV therapy than PIs. Could we wait for some scientifically rigorous clinical data before we answer that question? I am certain more HIVers have died as a result of NNRTI-associated adverse events than from those of PIs. There’s an exposé worthy of POZ’s journalistic prowess.
The article seemed to carry a healthy Viramune “we were underappreciated” bias. Justly or unjustly, the fate of Viramune was cast years ago and it’s futile to try to recast it. The marketplace can be a cruel mistress. The Viramune camp of whiners needs to get over its PI envy.
The article also suggests that the British have an old-world wisdom that we ugly Americans were too brash and arrogant to understand. The British health-care system is a joke! They didn’t use PIs because they were too busy rationing their pathetic brand of health care. Even a broken clock is right twice a day. Lastly, thank God for researcher Keith Henry’s humility. You can call him an industry patsy, but I’d say his only fault is that he cares too much.
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