Petrelis Files

POZ: Fear Factor, HIV Vaccine Ads & People w/AIDS

My latest column for POZ magazine is about the use of fear by the San Francisco health department and the National Institutes of Health to recruit volunteers for HIV vaccine trials, and also how fear is occasionally a key factor in HIV prevention messages.

Excerpts from my column, appearing in the August issue of POZ:

In those early days, we all grappled with spooky unknowns. What, precisely, caused the dying—and how could we stop it, treat it, live with it, get the care and respect we deserved? In such a climate, fear of the disease and dying was probably one of the best options to spur behavioral changes that could save our and others’ lives.

Now, as AIDS turns 25, so much has improved for those fortunate enough to have survived and have accessed treatment. Why, then, is fear—demeaning, demonizing, repulsive fear—still being used to hype HIV prevention?

Every night, as I walk home from dealing with doctors, diagnostic tests or running to the pharmacy to perfect my ever-changing AIDS cocktail, I must pass an enormous billboard selling fear in San Francisco. [...]

A supposed friend of people with HIV, the Stop AIDS Project, recently launched a prevention campaign with an alarmist tagline so creepy it seems ripped from a ’50s pod-people double feature:

“Some of the guys you’ll cruise tonight have an STD.”

Attention, good people of San Francisco! Run for them thar hills and hope those guys don’t follow you, swim through the sewers up into your shower and nail ya.

Then there’s another billboard, from SFisReady.org. “Ready for the day when we can date without fear of infection?” it asks in large black letters.

This one’s a recruiting tool for the HIV Vaccine Trials Network. I support the trials and hope they produce a vaccine, but I absolutely loathe how the ad tries to make us feel bad—that all potential sex partners might think twice about dating me. That all we homosexuals—“the gays,” as we are often lumped—are diseased and should be handled with tongs. [...]

What I didn't know as I wrote the column is that the CAB, community advisory board, for the San Francisco branch of the vaccine trials had heard from other gay men and people with AIDS, back in the spring, complaining about the campaigns and how they contribute to stigmatizing people living with HIV or AIDS.

As hard as it to believe, the CAB does not post its agendas or minutes on its web site, even though federal statutes require the board to share this public information, without a member of the public having to file a FOIA request. Someone should inform the CAB that the community has a vested interest in the work of HIV vaccine researchers, and that it has a sacred duty to keep the community at-large up-to-date on the trials and work of the CAB.

That being said, I have sent a FOIA request to the health department and the CAB, asking for their agendas and minutes over the past two years and have left messages for the health officials, requesting them to expand the CAB's site to regularly post information about their meetings and the topics discussed.

I've also managed to obtain the minutes, which appear in full below, from the CAB's meeting in April, when the group dealt with community concerns about the language in the recruitment ads.

From the minutes:

[Jen Sarche, director of community education] noted that we have received several emails regarding our “Ready for Love,” and “Ready to Date without Fear of Infection” ads which have appeared in the past two and a half months in Muni Stations and bus shelters. The emails expressed concern that the ads unintentionally stigmatized HIV positive people, or that they encouraged unsafe sex. A community member attending the meeting addressed his concerns to the CAB as an HIV positive individual, saying the ads were causing a “stir” in the community and felt the ads implied that people who were HIV positive could not be dated or loved without fear.

So how did the CAB respond to these community concerns?:

The CAB felt strongly otherwise noting the need to have messages directed at HIV negative individuals. Both HIV negative and HIV positive members of the CAB stated that fear can be a palpable and at times useful emotion. CAB members also pointed out the ads speak about fear of HIV infection which is significantly different than fear of HIV positive individuals.

While the CAB members, regardless of HIV status, believe fear is a proper tool in the fight against AIDS, and for them such an attitude may be appropriate, I don't think it's okay for the CAB to dismiss the concerns of people who took the time to write to the CAB and attend the meeting to express reservations. In my opinion, the CAB should listen to the community members who are troubled by the fear message and develop recruitment messages based on other factors.

More excerpts from the minutes:

The ads have sparked an increase in discussion about HIV vaccines as well as an increase in calls from potential participants. After a good and spirited discussion it was agreed that the current ads will remain in place. [...]

The CAB then reviewed a new ad that will be forthcoming in June. The ad ties into Pride for June, and talks about taking pride in joining an HIV vaccine study. The response to the new ad was less than enthusiastic. [...]

Sounds to me the CAB chose to ignore individuals from the community not happy with the CAB's work. So much for the CAB representing the full spectrum of opinions from the community!

Interesting that these minutes show some community members were less than enthusiastic about the use of fear, and took the time to write or show up at the meeting, while at the same time, without any sourcing, the minutes also illustrate the response to the Pride message was supposedly less than enthusiastic also. Odd that the minutes don't reveal who exactly lacked enthusiasm for the Pride campaign in June.

Did the CAB receive emails from the community showing no enthusiasm for the Pride ads, or was it just CAB members who weren't enthusiastic?

It is frequently said that we're all in the battle against AIDS together, whether we're poz or negative, a researcher or person living with AIDS, someone who struggles to live on disability benefits or an executive at a service organization making more than $200,000 annually.

On a basic level, I agree that everyone is affected by HIV and should be supportive of efforts to find a cure and an effective and affordable vaccine, and one way to keep us united to control and end AIDS is by insisting the HIV vaccine CAB in San Francisco listen to community members angry over the use of fear to sell the trials, and that the CAB publicize its monthly meetings and post its agendas and minutes on the web.

Here are the full minutes from the April CAB meeting:

HIV Research Section
San Francisco Department of Public Health
Community Advisory Board Minutes
April 18, 2006

Present: Alan Bettis, Brad Vanderbilt, Brent Sugimoto, Darnell Durio, Jamie Nesbitt, Jeff Gustavson, Karl Knapper, Michael Tyree, Naomi Akers, Stephan Oxendine, Steve Muchnick, Marina Rifkin, David Diaz, Albert Liu, Gavin Morrow-Hall, Jen Sarche, Jonathan Fuchs, Susan Buchbinder, and Parker Nolen (guest)

Announcements

- Steve Muchnick wrote a letter of support for Sonya’s R01 grant, and worked with Naomi to write one for the IDEA grant, and copies are available to the CAB.

- UCSF is looking for recruiters with experience working in communities of color for a gay couples study – contact Brad Vanderbilt if you know someone who is interested.

- We enrolled the180th participant in the ACE Study (HPTN 039) and enrollment will close internationally at the end of May. Thanks for all who helped make this day happen.

- The Volunteer Appreciation event is scheduled for June 8th – put it in your calendar. Invitations will go out in May.

- A health provider’s community forum is scheduled for May 3rd addressing emerging issues in HIV prevention, including PrEP, Serosorting, and Superinfection. We are hosting the forum with the San Francisco AIDS Foundation.

- Susan will conduct a HIV vaccine chat on gay.com May 17th, the day before HIV Vaccine Awareness Day – watch for login information.

Names Based HIV Reporting

California Governor Schwarzenegger signed SB 699 into law on April 17th, authorizing the use of names-based HIV incidence reporting in California. The change means that HIV testing sites will now be required to report new HIV cases by name to the state for reporting to the CDC. The CDC will use these data to determine CARE and Prevention funding for the state. This is a significant change from the previous non-name reporting which utilized a code-based system. Some members of the prevention community are concerned that the change will discourage people from seeking out HIV testing.

Participants in our prevention research studies are exempt from the names-based reporting requirement because of the protections in place for confidentiality.

The CAB recommended that we increase our community education efforts around fears around vaccine-induced positive tests and whether they are reportable, and made comments for clarification of the language around these issues in our consent forms. Questions were also raised about how the new law impacts people who were previously tested in confidential testing sites, and whether the state will go back to decode all the past HIV cases identified in California. Jonathan will clarify this part of the law and we will report back to the CAB about it at a future meeting.

Community Input into our recruitment ads

Jen noted that we have received several emails regarding our “Ready for Love,” and “Ready to Date without Fear of Infection” ads which have appeared in the past two and a half months in Muni Stations and bus shelters. The emails expressed concern that the ads unintentionally stigmatized HIV positive people, or that they encouraged unsafe sex. A community member attending the meeting addressed his concerns to the CAB as an HIV positive individual, saying the ads were causing a “stir” in the community and felt the ads implied that people who were HIV positive could not be dated or loved without fear.

The CAB felt strongly otherwise noting the need to have messages directed at HIV negative individuals. Both HIV negative and HIV positive members of the CAB stated that fear can be a palpable and at times useful emotion. CAB members also pointed out the ads speak about fear of HIV infection which is significantly different than fear of HIV positive individuals.

The ads have sparked an increase in discussion about HIV vaccines as well as an increase in calls from potential participants. After a good and spirited discussion it was agreed that the current ads will remain in place. Further discussion followed about the process for CAB approval of our ad materials. Because of time pressures, it is not always possible to wait for CAB meetings to get input into the ads. A small media review working group will be created which will be asked to look at advertisements on-line and get feedback back in within a couple of days.

The CAB then reviewed a new ad that will be forthcoming in June. The ad ties into Pride for June, and talks about taking pride in joining an HIV vaccine study. The response to the new ad was less than enthusiastic. Jen will work with our designer and inform the CAB of the finalized product.

Press and Communications around Project T

In the past month there has been a lot of press about pre-exposure prophylaxis, both about whether it is currently in use in the community, and whether TDF or Truvada were the better agent for it. An article went out over the Associated Press wire and was picked up by hundreds of news organizations. The content of this story was fine, but slightly confused, especially with regard to the tenofovir vs. Truvada information. More concerning were the headlines that were printed with the article, such as, “New pill protects against HIV.” Susan and Al also gave several interviews for original stories as well, including the San Jose Mercury News, the Wall Street Journal and CNN.

As a result, the PrEP Communications Working Group that has been previously discussed will be convened by the CDC to create some clearer messages for broad distribution. The Working Group will include representatives from each U.S. PrEP site, Brad and Steve O. will represent our CAB. We will convene a Project T working group meeting, including interested members from the community, to give Brad and Steve an agenda to present to that group.

Al will be speaking at a forum, hosted by CHAMP and AVAC, on PrEP in NYC next week.
Results from the PrEP survey that Al is conducting will be available by summer although to date no significant use of PrEP has been noted.

Explore and New Choices Data

New data from the Explore study has been released showing the significant predictors of HIV infection included the following:

- Having unprotected sex as a “bottom” with someone who is HIV +, HIV status unknown or a person believed to be HIV –

- Having unprotected sex as a “top” with persons known to be HIV infected

- Having had four or more anal sex partners in the previous six months

- Heavy (four or more drinks per day) alcohol use or having six or more drinks at one time

- The use of alcohol and drugs before or during sex

- Use of amphetamines

- Depression

- Gonorrhea

This new data seems in line with previous studies conducted by the Research Section that indicated that unprotected sex with unknown or persons perceived to be HIV negative, having multiple sex partners and use of alcohol and drugs were predictors of HIV infection.

Results from the New Choices study, a cross-sectional study looking for emerging risk factors for HIV infection, found that use of both crystal meth and Viagra (not necessarily together) were associated with unprotected anal sex with an HIV discordant or serostatus unknown partner.

The CAB stated that information was useful but did not discover new territory nor address the root causes of this kind of risk. The CAB wondered what the new data means in terms of future programming and policy directed at gay men. The CAB specifically wanted to know why will two percent of gay men still become infected this year and how do we create a healthier gay men’s community.

No one had clear answers to the questions but it was noted that the San Francisco Gay Men’s Community Initiative is addressing these concerns and should be invited to attend a future CAB meeting.