Project Inform marks 30 years
by Khaled Sayed
An HIV/AIDS organization that has had to adapt to changing times – and changes in the epidemic – will mark its 30th anniversary this weekend.
Project Inform will have a brunch Sunday, April 26 at Fort Mason, themed "30 Years of Information, Inspiration, and Advocacy."
The agency, which started at the height of the AIDS epidemic in 1985, has focused on encouraging better treatments for the disease, as well as to provide information on those treatments to people living with HIV/AIDS and, more recently, hepatitis C.
The agency does policy work around health care, including drug pricing and other coverage issues under the Affordable Care Act.
And, Project Inform came out last year with a series of ads supportive of PrEP, or pre-exposure prophylaxis, serving as a direct rebuttal to ads from Los Angeles-based AIDS Healthcare Foundation that questioned several studies showing PrEP is extremely effective when used as recommended.
It educates people about when and how to use medications to treat HIV and hepatitis C and manage their health care. It also helped to create the National HIV/AIDS Strategy in 2010.
During its first 20 years Project Inform's educational activities were all conducted through its well-regarded National Treatment Hotline, in-person town hall meetings, and publications mailed directly to people. The phone line, which now provides only call-back service weekdays between 10 a.m. and 4 p.m., is known as the HIV Health InfoLine. There's also a Help for Hep line for hepatitis C questions that Project Inform participates in with other hep C organizations.
"With the advent of the Internet, those activities began to slow and we were placing dozens of publications on our website to educate people," Executive Director Dana Van Gorder said, referring to the mailings. "Most of our educational materials are actually printed and distributed directly to people with HIV and hepatitis C through testing sites, community clinics, and social service providers."
Van Gorder, a gay man, has been with the organization for the past seven years, and was a founding member of the steering committee of the "Getting to Zero" effort in San Francisco. That collaboration among HIV/AIDS organizations, public health officials, and researchers, aims to cut new HIV infections by 90 percent by 2020. The ultimate goal is to get to no HIV infections, as the Bay Area Reporter previously reported.
"I chair the committee working to increase retention and re-engagement in care and treatment," Van Gorder said. "In the first days of the epidemic when government and industry were slow to investigate treatments for HIV, we smuggled any medication into the country that had a chance of helping people, and later developed our own clinical trials on potential therapies."
According to Van Gorder, as government researchers and pharmaceutical companies began to discover medications in the late 1980s and 1990s, Project Inform was part of the revolution along with ACT UP, demanding that people with HIV and their representatives be involved in all major decisions about bringing drugs to market- selecting compounds to investigate, designing clinical trials, deciding what drugs to approve for use and how to price them.
In those days, Project Inform was led by its founding director, the late Martin Delaney.
"We have had a role in bringing all of the 32 approved medications to treat HIV to the market," Van Gorder said. "In the early years of drug discovery, we also fought for and won rights for extremely ill HIV patients to access experimental treatments before they were finally approved."
Today, Project Inform is heavily involved in monitoring and advising research into an actual cure for HIV. It has also branched out from HIV.
"In 2011, Project Inform added hepatitis C to its mission," Van Gorder said. "We work with pharmaceutical companies to advise the development of additional drugs to cure this disease."
Project Inform's HIV education booklets are targeted to newly diagnosed people to help them understand the importance of early treatment and the role of treatment in prevention.
"Because other agencies produce educational materials for people with hepatitis C, our booklets on hepatitis C are written for people co-infected with HIV," Van Gorder said. "These are fairly lengthy documents, and so we break them up into sets of booklets that people can read as time permits. We have distributed over 100,000 sets of educational booklets in the last four years."
Project Inform's revenue for this year is projected at $3,779,628, with $1.81 million coming from AIDS Walk San Francisco, which takes place this summer. Another $840,000 is from corporate support, while $460,000 is from estates and bequests. Van Gorder said that $234,000 is from foundations, and $425,000 comes from events and individuals. Van Gorder said the agency expects a surplus this year of $555,000.
The brunch takes place from 11 a.m. to 2 p.m. at the General's Residence, 1 Fort Mason, San Francisco. Tickets are $100 per person. For more information, visit www.projectinform.org. Click on "Support Us," then "Events."