Project Inform Turns 25

Twenty-five years ago, a small group of people founded San Francisco-based Project Inform, which provides information about HIV and advocates for access to care. In the early years, PI's volunteer roster included smugglers of some of the first HIV drugs.

"Because we were losing so many people while these drugs were still being tested, we really beat up on the [Food and Drug Administration] to provide humane access to trials for people who could be rapidly dying," said Dana Van Gorder, PI's executive director. "In some ways, that sort of HIV activism really changed the paradigm of how we test, market and price all pharmaceutical drugs."

Providing health care access to people who cannot afford it has been an enduring goal.

"The biggest challenge now is how to get those 400,000-plus people not using [HIV drugs] into better care and treatment," Van Gorder said. PI has been on the vanguard advocating for people with HIV to access Medicare, Medicaid and federal Ryan White programs. For instance, a person with HIV but not AIDS would not qualify for Medicaid, Van Gorder noted.

PI was "heavily involved" with the recent US health care debate. Among the legislation's benefits, Van Gorder said, "The obvious one is that virtually everyone will end up with coverage."

Getting patients from diagnosis to care requires coordination among agencies and organizations -- a task that, though complicated, is worth the effort. "If you had just seroconverted with HIV and started to immediately take the drugs we have, which admittedly are not perfect, you are estimated to live a normal life span," he said. "It's profoundly troubling that so many people are not benefitting from this treatment."

For more information about Project Inform, visit www.projectinform.org.

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