It Takes An Activist...Or Three
L to R: Clinton Fein, Barbara French, Hank Wilson, Dr.Chip Chambers, Shane Snowdon,
Michael Petrelis and Kieran Flaherty, UCSF Campus, February 5, 2008
It began with a sensational front page story in the San Francisco Chronicle about a new staph infection at which men who have sex with men in San Francisco were at the epicenter. The study, which appeared in the Annals of Internal Medicine, was authored by UCSF, and its findings were touted in a press release which had the unfortunate effect of turning legitimate scientific data into an exercise in hysteria and homophobia, creating a media firestorm reminiscent of the early days of AIDS, when it was dubbed GRID. (Gay Related Immune Deficiency). Across the globe, stories about gay men being responsible for spreading a new superbug spread like a virus.
Misapplying epidemiological terminology, such as population distinctions, to an unsophisticated and lazy audience of journalists, resulted in confusion and misinformation being spread quickly, in some cases turning inconclusive data into established fact, and fueling the fires of homophobic organizations intent on finding evidence to support their agendas.
A subsequent apology issued by UCSF did little to clarify the misinformation or how the press release could be, and was, misinterpreted, and was all but ignored by most of the media organizations for whom it was most relevant. (Even UCSF's own student newspaper, Synapse, misreported on the issue, having to later issue an apology.)
Along with a few others, immediately following the initial reports, I wrote an editorial on my blog on SFGate (The San Francisco Chronicle's online media property) harshly condemning the irresponsibility of the language of the press release, and the docile transcribing by Chronicle's, Sabin Russell.
On Monday, January 28, I received a call from activist Michael Petrelis, renowned for his brilliant, yet often abrasive community activism, after he had unsuccessfully attempted to set up a meeting with Barbara French, the Associate Vice Chancellor, University Relations at UCSF, to voice his outrage and demand answers. At his behest, I contacted Ms. French, choosing to write a letter outlining the damage resulting from the UCSF press release, and urging her to meet with Petrelis, long-time activist Hank Wilson, who had also called requesting a meeting, and me.
I agreed to participate - calling for a meeting and offering to attend it - for a number of reasons. First, I learned long ago not to rely on organizations such as GLAAD (Gay and Lesbian Association Against Defamation) or in this case GLMA (Gay and Lesbian Medical Association) for things that impact me directly. When it comes to representing me, I generally tend to be my own best advocate. And second, many of these organizations are too bogged down in old-school, bureaucratic consensus-building techniques that don't equip them to act quickly or efficiently in crisis mode. While this story was gaining more and more traction, GLAAD was issuing press releases mourning the death of Heath Ledger.
Within a day of receiving my letter, Ms. French contacted me and agreed to meet with us. She also requested that we agree upon an agenda prior to meeting. After consulting with Petrelis and Wilson in terms of what they hoped to get out of the meeting, I drafted an agenda. My original letter and subsequent agenda made it clear that our objectives were not simply an exercise in pointing fingers and laying blame, but rather, sought to understand what went wrong and how, and explore what steps could be taken to mitigate the current situation, and prevent it from happening again. Ms. French's tone suggested to me that the meeting would be productive rather than combative.
It's worth pointing out that what was at play here was a very interesting dynamic. All three of us -- Petrelis, Wilson and I -- were coming to the table as three individuals, not as representatives of any particular organization or community group. And our expectations and approaches differed significantly. Petrelis, for instance, was determined to continue vocally criticizing UCSF's lack of accountability and inadequate response, while I felt that given their commitment to meet with us, they deserved a reprieve until they were given an opportunity to express their side of the story. The beauty of our meeting set-up -- that we were not united as a group - was that I had no control over how Petrelis chose to conduct himself leading up to the meeting, nor did I want it. Although I considered the possibility that he might antagonize UCSF, I was confident that they recognized they were dealing with three individuals, not one group.
And so it was. On Tuesday, February 5, 2007, three members of San Francisco's community met with Barbara French and other representatives from UCSF to address an issue that began weeks ago, and continues to generate headlines. In addition to Ms. French, present were: Kieran Flaherty, Director of State Government Relations; Shane Showdon, Director of LGBT Resources; Aimee Levine, Assistant Vice Chancellor for Public Affairs, Beth Mooney, assistant to Ms. French and Dr. Chip Chambers, a scientist and professor involved in the MRSA study at the center of the storm. (See photos).
Their willingness to listen to our concerns, clarify their actions, offer candid assessments and share their active and ongoing approach to addressing the issues that gave rise to the situation, was even more productive than I had hoped. Instead of being defensive and attempting to deflect criticism or shirk responsibility, Barbara French and her team demonstrated that they have the leadership, insight and commitment to remedy the situation and not just restore UCSF's credibility, but enhance it. (See Meeting Details below).
While I may not always agree with Petrelis' tactics and methodologies as an activist, (and I'm pretty certain I can say the same for the tireless Hank Wilson), I am honored and privileged to collaborate with such remarkable and committed individuals. The community owes them a considerable debt of gratitude.
There is something very powerful about people actively engaging in events that impact their lives, and standing up for themselves and their communities rather than waiting for others to step up to the plate, or simply complaining about circumstances with a preconceived notion that they have no control over events or cannot play an important role in shifting things that require it.
We sought answers and we got answers, we offered input and input was received, we spoke our minds but were willing to listen, and the conciliatory approach and civil discourse resulted in a remarkably fruitful exchange of ideas that reinforced the health and wellbeing of not only our community, but all communities.
MEETING DETAILS
The following people were present at the meeting: Barbara French, Associate Vice Chancellor, University Relations; Kieran Flaherty, Director of State Government Relations; Shane Showdon, Director of LGBT Resources; Aimee Levine, Assistant Vice Chancellor for Public Affairs, Beth Mooney, assistant to Barbara French and Dr. Chip Chambers, a scientist and professor involved in the MRSA study. (See photos)
Following introductions, I outlined the basic agenda items. (See agenda here). I was determined to clarify that our concerns lay not so much with the study, or its findings (although none of us was in a position to determine whether their methodologies were sound, or how or why they chose the sample groups they did ), but rather with the press release touting the study.
I pointed out that studies that result in findings that pertain to gay men (or women, or any population group for that matter), no matter how alarming the data, are valuable and necessary. We are not asking UCSF, despite media reports to the contrary, to sugar-coat scientific data in the interests of political correctness or tread with an oversensitivity that shields communities from data that allows them to make meaningful risk assessments and informed decisions about their health.
The core problem presented by the press release was a misapplication of epidemiological terminology that implied that gay men were about to unleash a MRSA strain on the "general population" instead of acknowledging that the strain already exists in the "general population," despite findings that it seems to have a higher preponderance among men who have sex with men.
This misconception was fueled by comments by one of the lead authors of the study, a postdoctoral scientist, Binh Diep, who expressed grave concern about "a potential spread of this strain into the general population."
Diep's subsequent comments about the intention of the press release to serve as a prevention mechanism shifted his role as a scientist reporting on the science alone to an area beyond his expertise for which he was neither trained nor qualified.
UCSF was quick to acknowledge the boundaries breached by Binh Diep. As a postdoctoral scientist, while excited about communicating the findings of his study, and whilst genuinely hoping to communicate the information in the interests of promoting health, he was unequipped to recognize the extent to which his comments could be misconstrued. Both Ms. French and Dr. Chambers expressed regret that Bihn Diep had not been more carefully prepared for the media onslaught, and have since moved to ensure that Doctor Chambers alone serve as a spokesperson insofar as discussing the science related to the study.
I also pointed out that the subsequent apology issued by UCSF was not quick enough and inadequate, and failed to clarify what data had been misinterpreted or how, and that some might construe the apology as a publicity maneuver to demonstrate contrition without really acknowledging anything. Ms. French responded to this, stating that their apology was anything but a publicity stunt, and explaining that their response time was based on careful consideration of what had happened with the original press release, and might have appeared vague because UCSF did not want to repeat the very same mistake, which could perpetuate the situation or be taken out of context and misused again.
Ms. French raised the challenge of balancing the needs of the community with the arming of medical professionals and healthcare providers with appropriate and accurate data. My response was that it would be more useful to then tailor communications for appropriate audiences, so that health care professionals could receive uniquely tailored information that was relevant to them in terms of treatment and prevention, whereas lazy journalists and media professionals from sensationalism driven media properties would receive information that was presented in a way that would least likely encourage sensational coverage.
Ms. French acknowledged that one of the lessons garnered from this situation was that UCSF was reminded of the extent of its leadership role and taking on more responsibility for broader community issues than just communicating the data from its studies.
Ms. French acknowledged that an internal task force had been created in the wake of the MRSA fallout, to streamline and coordinate efforts between and among various departments relating to the dissemination of news and public communications. This is an important and significant development.
Hank Wilson raised the issue of dissemination of studies, and the need for community interface, even if studies aren't published. He requested more transparency so that communities are aware of ongoing studies, in addition to being able to offer community input that could in turn inform the direction of studies underway or about to begin, or even pre-grant.
Dr. Chambers outlined the dissemination distinctions between NIH funded studies vs. pharmaceutical company funded studies, and raised the practicalities of community input prior to the writing of grants. It was generally agreed that only once studies had already been funded or grants provided, would it be beneficial to solicit community input to help inform the direction of such studies
Shane Snowdon discussed the ongoing development of a database that would allow for easier access to accommodate interest in studies and results, even those not published, or terminated prior to conclusion.
Michael Petrelis raised the issue of community meetings, urging UCSF to sponsor its own open community meeting to address the MRSA issue. While both Ms. French and Ms. Snowdon communicated UCSF's involvement in numerous community forums currently underway, Petrelis felt that a forum hosted by UCSF would better demonstrate UCSF's willingness to hold themselves accountable in the eyes of the public. UCSF agreed to explore the issue further to assess its feasibility and effectiveness.
Petrelis also suggested a public awareness campaign where, for example, Mitch Katz and the Chancellor both washed their hands with soap and water to demonstrate the most effective staph infection prevention method to date.
I suggested that given that MRSA could impact people who go to gyms, for instance, it would be useful to start thinking outside of the box in terms of prevention techniques, so that prevention reached beyond the confines of usual constituencies such as Stop Aids or Magnet, and further serve to illustrate that prevention education is not only targeted at gay men.
In a discussion with Aimee Levine following the meeting, we discussed the extent to which strategies pertaining to studies, community relations and communications with this community could serve as an across-the-board template in managing other communities, particularly vulnerable populations, such as children, women or prisoners.
The most important thing to come out of this, I believe, was that UCSF was given an opportunity to recognize the leadership they offer in the work they do, and the global impact of their role. They agreed that this situation, the lessons learned from it and actions taken as a result will allow them to set the bar when it comes to the establishment of best practices, which was the essence of our participation.
We recognize the valuable health opportunities that UCSF provides that benefit our community and the population at large, and were looking to establish a more productive partnership in the achievement of these goals by creating a climate of trust and mutual respect. An environemnt where our input is sought, considered, and fundamental to the ongoing success of future studies and research. I believe we took a big step in moving towards that goal.
This is all based on my recollection. I didn't take many notes, as I was more engaged in the discussion at hand. I'm sure I have skipped over additional items that might have been discussed, although I think this covers the gist. Michael Petrelis and Hank Wilson may likely recall more details, which I will add and update here, in addition to uploading or referencing more documentation that has yet to be digitized.
All in all, a productive day.
