San Francisco Chronicle - February 10, 2008
Sam Whiting

"When the hospital decided to eliminate the clinical research department completely, our community advisory committee wanted the hospital to continue to honor their commitment to serve the HIV-positive community. My thought was to get all the clinical research sites to work together. There are a lot of studies that need to be done to make HIV progress happen. Without research nothing moves anywhere.

Hence we developed this newsletter because our clients, particularly in the Tenderloin area and South of Market, are not computer literate. There's always Clinicaltrial.gov if you want to spend a week looking for what's happening here, but not without a computer. So we said, 'OK, we're going to do a printed letter. We're going to do it as comprehensively as possible, and try to make it economical.' We're not a high-tech glossy publication. I'm using prehistoric publishing software.

HIVCare News was a leftover name from the clinical research department here. The newsletter was just about the individual studies that happened here at St. Francis - 'This is what we're doing here, folks, come and sign up for our studies.' That's all it was. It was an ad.

The format changed from just being about us to being about everybody. When I launched the new format, in December of 2003, we had just 100 or 200 people on the mailing list. Now the mailing list is about 1,500 printed copies and about 250 e-mail copies. Subscribers include all the doctors I know that treat people living with HIV, Project Inform and every other AIDS service organization. It comes out every other month. I used to do it every month and it drove me insane. It is a free community benefit.

People call every day asking to get on the mailing list. I always ask if they'd like to get it by e-mail, and they always say 'no.' They don't have computers and it's easier to have a copy in your hand. The mailings are expensive. We send it first class. It comes in an envelope, so it's private. It could be a bill. So no one's the wiser. It circulates to people living with HIV in San Francisco, the East Bay, Marin, Sonoma, Napa, Contra Costa. It goes to San Jose. Then I have people all over who ask for it. Like in Las Vegas, Palm Springs, just weird places.

I decided to learn about HIV treatment 15 years ago because I had a dear friend who was being badly treated, in my opinion. There was no Internet, so I went to Project Inform to do that. I wanted to help make people aware of treatment options, what it takes to survive. That snowballed into writing. I never imagined doing this. I was a high school counselor and English teacher for 20 years in Vallejo and Union City.

My feedback is what keeps me going. Most research now is in treatment of HIV, as opposed to eradication. Of all the studies we've published in the last four years, we've only had one study looking to eradicate the virus. That one is happening right now and that's a good sign that we can all pack up our shop and go home sometime soon. I'm going to get another job. I think I'll be a dog walker or a private investigator."

The Lightbulb: My position as outreach coordinator was eliminated from the hospital. The HIV care department was gone. I was gone. But there was still a need to connect people with studies. So this was my little idea of how to do that. 'I'm going to write a newsletter. I'm going to try to be a clearinghouse for clinical research studies.'

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Always watch for outdated information. This article first appeared in 2008. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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