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The Loneliest Activists

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5 Comments

Loreen Willenberg

Hi Paul, It was good to see you recently in San Francisco - sorry we didn't have the chance to chat for very long. I've been wanting to read your POZ blog for a while now, and tonight was the night. I'm glad I found this IBT piece of yours - it's quite well written, by the way, as all of your entries are. As you know, I've been fascinated by IBT for many years, since my induction into clinical research studies for HIV Controllers. I may have started on a clean slate back then, but that's not true anymore. I continue to learn by reading about the human immune system every chance I get (not easy with a full time job plus establishing a new non-profit organization), and gleaning information directly from the many brilliant immunologists who conduct the many studies I am enrolled in. I agree with you that the manipulation of the immune system holds an important part in the solution of HIV infection. I live with the hope that one day, this robust immune response within my body will get defined, and then shared, with the entire PLWHA community through the wonders of science. And, who knows, with a couple more years of study under my belt, I can team up with Richard Jeffries to keep him company on that climb up the hill!! Peace, Loreen

September 15, 2009

Jeton Ademaj

i agree that IBT needs far more research. i strongly suspect that part of the IBT inertia among activists is due to vestigial paranoia about giving time to AIDS/HIV denialists. that group was always very vocal about IBT ("AIDS has more to do with poppers, illegal drugs, stress and depression than with HIV"), so i really suspect that some of the very-justified vigilance against HIV-denialists has spilled over into a general distrust of IBT. of course, the complexity and skimpy HIV/IBT track record contribute as well...i think MOST activists really started learning about ARV after The Cocktail developed, meaning that most activists only want to know about something that they think/know will WORK. unfortunately, that fact and the past association of IBT with denialists suggests that IBT activism will remain a lonely business for some time to come. i think that's a shame, because i also suspect that the key to a CURE for HIV lies with IBT.

June 3, 2009

Randal

I too welcome the possibility of immune based therapies. As you may recall, a couple of researchers in Quebec discovered that the only thing preventing T-Cells from killing hiv was a missing protein. It has been over 3 years since this discovery. In addition, we have the experience of the bone marrow transplant patient in Germany who got a match from someone who had both parents with the CCR5 blocker. As a result, this patient is now reporting no evidence of viral load whatsoever. IBT is the only way to go and I too am convinced that this is where the cure lies. But my own observations would seem to indicate that companies outside of the USA are more likely to develop it. The problem with the USA is that things are done by the lobby and big $$$. Most recently I contacted the FDA to make some suggestions on drug applications. And they routinely delete my email without even reading it. Do I need to say anything more?

June 3, 2009

michael

Paul, Yes, could n't agree more with the need to develop IBT's for HIV infection. One question; do you think if there was as much profit to be made in going down the IBT route (which should lead to eventual long term control / eradication) there would be MUCH more effort in this area. FACT: there are BILLIONS of dollars to be made (have been made) from drug based HIV maintenance therapy and with all that lovely money coming in, there is not a real fiscal incentive to go down a route that will lead to a cure. I would like to add that I am ever grateful for drug development and recognise the HUGE impact it has had on my life, but let's get real, there's not going to be any real development in IBT's for the reasons given. Cheers, Michael.

May 30, 2009

Paula

HCV has been cured??? Really? Tell that to all the thousands that don't respond to the current treatment. Puh-lease.

May 30, 2009

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