On Saturday morning, directly after breakfast and fully caffeinated, I gave my current treatment update for the entire group. In the afternoon I held a smaller group question and answer session. Both of those sessions went well, seemed well received and were hopefully helpful for the participants.
Throughout the weekend I also talked informally with many of the folks there about their situation. These one-on-one talks are typically my favorite part, because I get a chance to really learn each person?s story. Over the years I have grown attached to Montana, and the people I have met. The folks living with HIV there are a diverse, interesting and wonderful lot. After this weekend, I am concerned about some of their docs.
Two stories stand out. The first was a guy who came up to my right after my first talk. He had been taking Sustiva plus Combivir for about 2 years and had a very difficult time with side effects. Fair enough. His doctor?s approach? Put him on Combivir alone!
He wanted to know if this was okay? Uh, no. I was clear that it is never my job to tell people what they should and shouldn?t do, but that Combivir alone was not considered appropriate treatment- by the Federal Guidelines, or just about anyone else. Luckily it had only been a couple of weeks- but still.
The second guy was taking unboosted Crixivan (three times a day on an empty stomach) with Zerit and Epivir. That might be okay if this were 1997, or he didn?t have significant facial wasting, and peripheral neuropathy. But none of that is true.
I know that it is unrealistic to expect that everyone with HIV get the kind of care I am afforded by living in the Bay Area. But these two stories illustrate a real problem- particularly for people living in areas with few HIV experienced providers. I would love to think that in 2008, nobody would get this level of awful care- but I know it isn?t true.
I referred both of these guys to the Federal Guidelines and a telephone service of the University of California San Francisco that provides expert guidance for physicians who are not experts but who are treating people with HIV. I hope that was enough to get both of them the proper care they need.
Oh, and I got a cool pair of socks with bison on them during the white elephant exchange. Yay for me.
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