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Why is there a CD4 Gold Standard Universally Assumed?
Mar 23, 2009

How can practictioners conclude at what CD4 number a patient should begin therapy or "treatment" (read: go from feeling healthy not on the meds to feeling like wanting to die b/c of the meds). It's my experience that there is a wide individual variance among every one who tests positive. There is so much variance in fact, it seems almost criminal to assume a "gold standard CD4" for all peoples without regard to genetics, gender, race and other variables. Some people I know have very small CD4 numbers (myself - never above 400 in 17 years) while others have high numbers (800 with symptomatic illness). I have been pigeonheoled into labels like "elite controller", "viremic controller", "viremic suppressor", "slow progrerssor" "Low set-pointer" and yet my VL (averaging between 3,000 to 7,000 consistently for the duration) puts me out of every one of these tidy title parameters. In fact, I have had readings in 2003 and 2004 far higher than those in 1995 and 1997 by even over the 20% variance usually abscribed.

Conversely - or rather, unfortunately, there appears to be no interest in using me for any study though I have offered for many - for free. There then remains only the (albeit) cynical view that this whole deal is entangled in pharmaceutical interests and bias - as I wouldn't be able to further them in their drug funded studies which claim to start sooner and the sooner the better. I think the hit early hit hard era pretty much (aside from annihilating the quality of life for millions into the new millenia - and then being forever hosed by the SMART study findings of "too late to go back") showed that all approaches must be on the table. And even now, to prod non-med advocates such as myself (routinely hissed at and marginalized), they trot out dread case scenarios of un-treated HIV leading to malignacies, heart disease, kidney disease, liver troubles, etc. as being higher than the non-HIV population in such a way and in so many numbers as to alarmingly encourage getting on the drug teat.

Somewhere there should be the argument that - and it seems viable - a multi-factoral approach to initiating treatment which includes and complements CD4 numbers (maybe percentage, or the other aggregate clinical markers) should be considered as a more flexible prognosticator.

Or best of all, have the clinicans take a couple months of these meds, and see how eager they are to push these toxic, nasty compounds which wreak havoc on the gut and have supplanted "old time" OI's with liver failure as the new number one cause of death among positives - and have them reconsider the quality of life of never being too far from a functioning toilet (so don't visit Paris!) and feeling like death. Quality of life over quanity of days. These are terms you never hear. Just the doctors doing the bidding based on conference studies and quidelines feuled by fat grants from pharma to keep it goin. Certainly not clinically.

It's not altruism - this march toward 500 CD4's. Hell, under that definition, I would have been put on meds in 1992 - and I doubt I'd be alive today - though if I were - barely recognizable as a human being.


Response from Dr. Henry

Thanks for sharing your frustration with the wide variability in CD4 counts (in same px can vary due to circadian cycle by 30% throughout the day) that vexes patients and clinicians on a regular basis.

muscle and bone pain
HIV and hip replacement

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