Apr 30, 2007
Thanks for speaking at the recent HIV Symposium in Durham NC!
With that said, I wanted to say that I was a little disappointed that you didn't give your "scheduled" discussion, but instead went with something a bit more off-the-cuff. I know thats like looking a gift horse in the mouth, and for that I apologize, but I bring it up because it relates to an issue I'm having...
This symposium was my first "public" HIV related experience since my diagnosis last December, and after interacting with people at the symposium I understand why you changed your discussion. I admit I must be naive, but I was really surprised to find many of the attendees to be technically ignorant, if not down right clueless, of this disease; and these are the people that are LIVING with it?
It does go a long way towards explaining why it has been taking such effort to have my Dr interact with me at the very technical level that I like. I can imagine that as a Dr it has to be really difficult for you, in the typical "visit", to gauge someone's intelligence and technical competence; so I understand that this is something that is going to take time to establish.
I guess I just didn't imagine that the majority of people really do NOT want to know the specific technical aspects of their condition? That just boggles my imagination, but explains why it has been so difficult to find good "sources" for technical information. By the way, both Wikipedia and "TheBody PRO" have been great technical sources.
My question is one of curiosity, since my experience has been so limited:
What percentage breakdown of HIV patients do you find really dig into the technical aspects of the disease vs those that want to "trust the Dr to know what's best"?
Do you find any correlation in how well these two different groups do over the long term, or is "survivability" more a Crap Shoot of genetics and environment?
Response from Dr. Wohl
I am glad you were able to attend the Duke Community Forum. It is a wonderful event and Regan Hoffman from Poz Magazine was stellar.
I am sorry that my presentation on tips on how to not only survive but thrive with HIV was not appropriate for your level of HIV understanding and sophistication. It is difficult to gauge accurately the level of knowledge of an audience and my experience has been that too many doctors speaking to community groups aim well above the head of the average Joe or Jane dealing with HIV. Maybe it is different in SF or Berlin or London but, here in the US South there is a real need for basic HIV education among PLWHA and the general population.
My scheduled discussion on new meds would have glazed the eyes of those in attendance who were unsure what a CD4 cell does, let alone how CCR5 inhibitors work. In my own clinic, I would guess that 5% or so are very well read on HIV and its therapies. So, my goal was to embrace the 95% of those likely to be in attendance who need the basics.
I suspect, data hungry types, such as yourself, will be able to find info on new meds and other aspects of HIV management on the web, in journals or via other sources.
There will be an excellent second chance. UNC has a forum for the treating community coming up on May 7th. Trip Gulick, Joe Eron and other stars of HIV therapeutics will be there. Check out http://www.id.unc.edu/hiv_07.pdf.
It will be an event that will be geared toward providers including clinicians but also nurses and case managers. You will love it. Only $25 registration fee.
See you there.
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