Forum on Managing of Side Effects of HIV Treatment: Dying Early, courtesy of the CDC Biostatistians
Posted by pozlife on June 27, 2007
Dying Early, courtesy of the CDC Biostatistians
Jun 8, 2007
You folks are doing a great job-many, many thanks. 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, CD4s 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 S
Response from Dr. Henry
In my opinion, the current goal of HIV therapy is to achieved a normal life expectancy (not shortened by HIV infection) and have a full and enjoyable life. Recent estimates of the “average” life expectancy of HIV+ persons with access to good treatment have been as much as 34 years (US study) and up to 40 years (European study).
There is a wide range of clinical outcomes, but increasingly the major threats to health/life for HIV+ persons are non-AIDS related (heart disease/cancer/liver. kidney) that may still be impacted by HIV infection. The overall negative impact of HIV on health seems to be diminished when the CD4 count is regularly more than 500. Thanks for sharing your story with the readers here. KH