Bay Area Reporter - September 21, 2006
Matthew S. Bajko, m.bajko@ebar.com

The health department's HIV Research Section Community Advisory Board last week posted the time and location of its latest meeting (Tuesday, September 19) on its Web site after AIDS activist Michael Petrelis had inquired about where and when the CAB met. But a day after posting the information, research section staff deleted it and posted a note saying that the CAB meetings "are private and open only to members."

In late August Petrelis had asked the health department about the lack of information about the CAB's meetings and minutes on its Web site at www.helpfighthiv.org. Under the Federal Advisory Committee Act, Petrelis argued the CAB was required to post such information.

At the time he requested that the minutes be made available to the public, Petrelis said that he was "convinced the CAB and the trials are doing tremendously great and important work, and that transparency will do much to assist the CAB and researchers in finding an effective vaccine for HIV." After he was denied attending the meeting, he filed a complaint with the sunshine task force.

"Maybe it's time for the C in CAB to no longer stand for 'community,' but instead 'closed.' Let's be honest this CAB is a Closed Advisory Board," said Petrelis in an e-mail.

Dr. Susan Buchbinder, director of the research section, initially had informed Petrelis he would receive the information he had requested by Tuesday. But by last Friday, she sent him an e-mail saying she would in fact not be producing the records and that CAB meetings were only open to members. She also said federal guidelines do not require the CAB to hold open meetings.

In a phone interview this week, Buchbinder defended the closed-door meeting policy, saying it is needed in order to protect both the private health information of CAB members as well as proprietary information about the companies involved in the research that is shared with the CAB. The department currently has two research projects under way, one an HIV vaccine trial and the other an efficacy trial on a potential new HIV prevention tool.

"We are allowed to do that. It is a closed meeting with a small group of community members who have gone through an extensive training program so that allows us to delve into deeper issues in our research," said Buchbinder. "In exchange the companies that make the vaccines we test allow us to discuss with our CAB information that would otherwise not be publicly disclosed."

According to the CAB's Web site, the board consults with HIV researchers to ensure their work "is responsive to the needs and concerns of our diverse Bay Area communities." It does not list the members of the CAB, only saying it is comprised of health educators, study participants, people living with HIV/AIDS, women of childbearing age, youth, minorities, religious communities, and community-based organizations.

Petrelis said he is asking for more transparency in the CAB to ensure that the community is in fact being engaged.

"Their Web page stresses community. What community? We are trying to find out what community is represented in this CAB. We don't know because we can't find out," he said. "I want clarity. I want openness. It's work that will affect our health and well-being."

Petrelis added, "I say that in the context of I want a vaccine for HIV. I support research for a vaccine."

The complaint committee of the city's Sunshine Ordinance Task Force is set to hear Petrelis' complaint on October 10. Frank Darby, the task force's administrator, said he was unsure if the CAB falls under the purview of the city's open meeting laws. He said it depends on if the CAB is deemed a policy body or a passive body if it must allow the public to attend its meetings.

"Right offhand I don't know myself what the status of that body is," said Darby. "If it is a passive body it may not be open to the public."

The task force's complaint committee will determine if it has jurisdiction over the CAB, and if so, will forward Petrelis's complaint on to the full task force for review. Even if the task force does decide the CAB meetings should be open, the research section does not have to adhere to its decision. The matter could ultimately end up before the city attorney or Ethics Commission, said Darby.

"The task force does not have the authority to enforce its ruling," he said.

No matter how the task force decides, Petrelis said the CAB should allow the public a chance to review its work.

"If it turns out federal, city, and state sunshine laws don?t apply, morally it is incumbent upon them to open their meetings," he said. "Year 25 of the AIDS epidemic in San Francisco and the community is excluded from a community meeting? It says a lot about something that is wrong with the AIDS office."

Buchbinder, who said she was unaware of the task force's meeting to hear the complaint, insisted that the CAB does not need to adhere to the city's sunshine laws.

"We don't meet any requirements for a policy body as defined by the sunshine task force. We are completely outside of the realm of the task force," she said.

Buchbinder declined a request from the Bay Area Reporter to attend Tuesday's meeting, saying only CAB members could extend an invitation. She did agree to ask the CAB if a reporter could attend its next meeting to discuss the closed-door policy.

At least one CAB member disagrees with the policy. The member, who agreed to talk only on the condition of anonymity, said he had been a part of CABs in other cities and never encountered "an attitude like this before." Because federal tax dollars are involved, he said there should be some transparency with how it operates.

"I think they should at least post their meeting minutes publicly, make data available and the research they are working on," he said. "What are the researchers' findings? They present stuff to the board when they meet every month. Let people see what is happening, what is effective and what is not effective."

Longtime AIDS activist Hank Wilson, who also attempted to attend a CAB meeting, said the meetings should be public.

"They should have as a given a public comment period and anyone from the community is welcome to come and make a statement or ask for feedback. It shouldn't be a controversy at all. To me it is shocking to find out that this isn?t in place," said Wilson, who was threatened with arrest for trying to speak at a CAB meeting several years ago. "We have a right and certainly a responsibility to monitor what is happening to us."

However Jeff Sheehy, the mayor's AIDS czar, disagreed, saying there are good reasons for why the CAB should not meet in public. He said the CAB has a duty to protect any information it may be given about the people involved in the research studies.

"I don't see any reason to have a public CAB for research," Sheehy said.

Outside of joining the CAB, which has a waiting list for new members, Buchbinder said there are multiple ways for the community to learn about the research section's work or express input. She said the section hosted seven community events in the last year where the public was welcome to attend, has held focus groups on its work, and made 30 presentations to community-based groups.

"The CAB is just one way of getting community input. We also encourage people to call us and talk to us about the things that concern them. We have innumerable conversations with the community," she said, pointing out that all of the section's staff members and phone numbers are listed on the Web site. "We really value the community input we get and our CAB members are involved in that."

The research section recently hired Matthew Florence as its new director of community education and recruitment. Florence, an HIV-positive gay black man who worked briefly as the deputy director of the Black Coalition on AIDS, began September 1 and is charged with improving how the section informs the community about the work it does.

"I have been surprised at this controversy. The research department, the more I get to know it, is a very open place. There have been numerous ways for people to give feedback," said Florence. "One of my first priorities is to develop new and better ways of getting feedback from the community. Research is a very complex entity. It is not always easy to communicate exactly what goes on behind these doors. One of my goals is to figure out how to break down the complexity of that and let people know a little bit more about what is happening."

As for upcoming events, Florence said the section will have a booth at the Castro Street Fair next month and will take part in both the Latino Gay Days and Latino AIDS Awareness Day events.

"Whether or not we have been open û and we have been û perception is everything and I want to change the perception of how open we are," said Florence. "I think the community is going to be really excited about the things we are planning."

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