CDC Biostatistians Claiming HIV/AIDS takes 16 years off your life
Jun 12, 2007
I have a question that has been eating away at me since the CDC in their infinite wisdom issued their findings, as usual, without caveats, additional resources, or other possible ways of more fully understanding their pronouncements. The question: I have been HIV/AIDS positive since 1980....yes, yes, I know that is Before the CDC issued their "Presenting Symptoms" notice in 1984 as the Dr. in charge, who was gay and fearful he would be "outed" if he released the information-which he had sat on for two years and who knows how many of us were lost because of his personal cowardice. But in 1980 I had ALL the Presenting Symptoms and KNEW I was infected. My question follows on the heels of a misguided or simply stupid and very inconclusive revelation a couple of months ago by a CDC Biostatistician that have HIV/AIDS would foreshorten your life by 16 years and more if you were a member of a particular minority group. As usual, there were no caveats, extenuating circumstances, or any attempt to put this in a contextual frame-just the facts Mam. It's back to the good ole days of Dragnet. SIGH. In my 27 years, I am still undetectable, CD4's at 450, everything else looking great-I do pay attention to my diet, am extremely diligent regarding my dosing schedule, exercise regularly, have been in a great relationship with a fella for 20 years, raised a great daughter who just finished her first year as a teacher in Texas...We were "married" in 1981-in front of 250 friends in a real church with a real pastor, even caught the eye of Herb Caen who mentioned us on the front page of the SF Chronicle (I was asked by my many friends the next day at work why they weren't invited-my only excuse was that it was a small church). Anyway, I digress. My point is, good for the statistician, she was doing her job, but damn her-to put that kind of information out with NO qualifications, extenuating circumstances, etc. etc. etc. is despicable to say the least. So here I sit at 59 wondering if I'm really in the "sundown" of my existence or that the CDC person was playing the averages. I know that in some ways I am a lab rat, as no longitudinal studies of folks who have been infected as long as I have exist. But to put this kind of damning data out with no consideration of those impacted by it is not only insensitive, but irresponsible. I'm interested in what your experts have to say not only about her behavior, but her findings and should I be planning to just fall over one day and that's all she wrote folks. As far as I'm concerned, she can take her data and choke on it. It's totally useless, unless you're trying to rise through the ranks of the CDC and stay on the good side of Dr. Julie Gerberding in case there a Nobel Prize or something equally pompous at the end of the tunnel. Many thanks for the great job all of you are doing-it's vital, life affirming, positive and wonderfully informing and empowering information that you are sharing with the HIV/AIDS Community. You folks deserve the Nobel for being very noble in your efforts and successes at becoming a valuable resource and friend to our, unfortunately, growing community. Cheers, Erin
Response from Dr. Frascino
I assume you are referring to Elena Losina's study. She presented her findings at this year's Conference on Retroviruses and Opportunistic Infections (CROI). Using a statistical model, she concluded an estimated 16 years of life are lost per person on average due to HIV in the United States for patients who receive guideline (U.S. Treatment)-concordant care compared to HIV-uninfected individuals of the same demographic composition. Please note these are "estimates" of an "average" and based solely on a "model." In other words, you are reading way too much into these data by trying to apply the estimated average results to your very specific situation. Add to that general disparities of access to care, treatment decisions within the guidelines and most importantly, the fact the analysis did not take into account future improvements in care and efficacy of new and evolving therapies, and hopefully you'll begin to realize the limitations of trying to take the information in this study and apply it to your specific prognosis, morbidity or mortality! It's a bit like comparing apples to oranges (or, in this case, perhaps even kumquats!).
The real take-home message here isn't "start planning to keel over any day now," but rather that the progress made over the past decade using HAART (highly active antiretroviral therapy) in the United States has resulted in astounding survival gains! So this study was basically presenting good news, not bad! We should be and I certainly am anticipating continued improvements in HIV/AIDS care as well as the introduction of novel new therapies. In the treatment pipeline we have integrase inhibitors, CCR5 antagonists, gene therapy, other immune-based therapies and further refinements in the antiretroviral drug classes we are already utilizing so successfully. In other words, we have cause for optimism that we may die of "old age" rather than "old AIDS!" As an HIV-positive buddy of mine recently said, "I plan to live forever. So far so good."
Be well! Let's get through this together, if for no other reason that to prove that biostatisticians wrong, OK?
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