HIVresource: Linking People to Research & Care

Throughout the 30-year history of HIV/AIDS, clinical trials have played a pivotal role in progress made against the disease.  They have helped us discover life-saving drugs.  They have provided care and treatment to people who might not otherwise have access.  They have sparked volunteerism among people living with the disease who were willing to do whatever it took to break new ground in medicine and research.  They have encouraged community activism, which accelerated the approval process of many emerging medications.  And they have provided people with information to become more educated about their own health.

“Most importantly, clinical trials provide a venue in which we’re able to learn about what works and what doesn’t work, not only to mitigate HIV but to enhance the broader benefits of overall health,” said Dr. Judith Auerbach, vice president of research and evaluation at San Francisco AIDS Foundation.

Since the first clinical trials of HIV treatments began in the 1980s, people in San Francisco have been among the most willing in the world to participate in them.  The city’s spirit of discovery has made people eager to do their part to advance science and save lives.

For 13 years, from 1990 to 2003, St. Francis Memorial Hospital conducted hundreds of clinical trials on new medications at all stages of development, and provided an array of support services for people living with HIV/AIDS.  It publicized its trials through a hospital newsletter that let people know what was in the pipeline so they could volunteer to be part of the research.  But in 2003, the HIVCare unit at the hospital closed, leaving a gap in our community.

The closure did not stop one of the hospital’s outreach coordinators from continuing St. Francis’ legacy of HIV research and care.  In 2003, Diane Cenko redesigned the hospital’s newsletter, called HIVCare News, to let people know about ongoing and upcoming studies at locations all over the Bay Area.  The newsletter quickly became a popular go-to resource for people living with HIV and for clinicians and community health providers.   People called almost daily to get on the mailing list.  They saw it as a vital tool to advance research and increase access to medical care.

But last year Cenko published the final issue of HIVCare News; there was no more funding for the newsletter.  The announcement touched off an immediate outcry from doctors and clinicians across the Bay Area.  That’s when San Francisco AIDS Foundation got a message urging us to continue publishing the newsletter.

The foundation is proud to be publishing the first issue of the newly named HIVresource this month.  It includes the latest news on HIV/AIDS research, as well as descriptions of currently enrolling clinical trials happening around the Bay Area.

“It provides news that people can make use of for their own health,” said editor Reilly O’Neal.  “The bulk of the publication is study listings, in accessible language, so that people who aren’t able to search clinical trial databases online can find studies that fit their needs.”

The life-saving component of informing people about clinical trials cannot be overstated.

“Some studies are looking for people who’ve never taken antiretroviral drugs to treat their HIV,” said O’Neal.  “So for some people, this may be the first time they’ve spoken with a doctor about HIV since they got the news they are positive.”

HIVresource is a strong collaboration between San Francisco AIDS Foundation and researchers, and it will continue to grow.  The newsletter will be mailed quarterly to subscribers.  The plan is to constantly expand the list of people who will get the easy-to-digest publication.

“It’s a great fit with San Francisco AIDS Foundation’s goal to connect people to care and advance research around HIV treatment and prevention,” said O’Neal.  “It is of huge value to the overall health of our entire community.

 What do you think?  Have you been part of an HIV-related clinical trial, or known someone who has?  Were you subscribed to HIV Care News? Tell us what you think in the comments below, or use this spot to post this piece to your Facebook page.  


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