20 July 2012 – The View From Here: All of what I am and am not

The opening plenary of the International AIDS Conference tends to set the stage for the conference. The importance of combination approaches to prevention, the value of HIV-positive participation in the next phase of the epidemic, and the hope of ending the epidemic through interruption of vertical transmission (mother to child), viral suppression (of those who are HIV-positive), and changing the risk context of vulnerable populations.
Dr. Fauci outlined the history and impact of biomedical approaches in the HIV epidemic. From the 1994 study that demonstrated how to interrupt vertical transmission (mother to child), to the advent of HIV treatment to the latest buzz on viral suppression, microbicides and pre and post-exposure prophylaxis. Even with these interventions, Dr. Fauci pointed out the “drop down” of the epidemic’s reduction is not steep enough: the push for vaccines and cures must remain, and behavioral interventions must bolster those interventions at the clinical setting to increase the angle of the “drop down.”
Phill Wilson, CEO of the Black AIDS Institute, launched into a diatribe about the epidemic domestically, and how some voices remain silent and others are silenced. The complexity of the US epidemic is that it resides within not just one dimension or demographic. Prevention efforts stalled in the past 15 years. The missing pieces include non-English speaking, homeless, transgender and key populations like Black gay men. The system work well for some; but for others, the system is broken. It is vital to connecting the science to people’s lived experience – how do people fall out of treatment? Why are so few virally suppressed in the US? What are the support systems necessary for linking and keeping people in care? Leadership matters because the leader defines the conversation. The biomedical interventions are the most powerful tools in the prevention toolbox in the past decades, but they will not work without connecting the people who need to use them with the people who provide them. AIDS organizations must re-tool. Most are only set up for behavioral interventions, and do not have clinical staff or education available for constituents.
US Secretary of State Hillary Clinton spoke to a standing ovation. After a brief protest from the crowd, Madame Clinton pointed out the history of action as a means of advancing the medicine, treatment and knowledge. From a systems point of view, Madame Clinton indicated that high impact interventions based on science, and treatment and its delivery systems are both required to end the epidemic. She lauded the recent coordination by funders and service providers as a necessary next step. To get to an AIDS-free generation, it requires invigoration, more resources and smarter strategies. Specifically, mother-to-child transmission, access to treatment, the inclusion of other contextual factors to HIV risk in planning and programming, and an investment from the policy leaders are the only ways to create an AIDS-free generation.
The opening plenary crystallized for me when Phill said, “All of what I am and am not must be a part of the conversation.” He asked for people living with HIV to disclose their status to friends, family and socially, if it was possible. He reminded us that no matter what he is – Black, gay, HIV-positive and (by AARP standards) a senior – there are still many things he is not, many voices that need to part of the discussion in order to best gear up the next phase of the epidemic. He illustrated that by disclosing we save our lives and someone else’s, and that maybe one day, they’d be able to disclose too. While disclosure is obviously continent on a range of social and personal issues, his relentless demand – that our personal lives can and should be part of driving the political and health service program discussions – remains a formidable challenge. Will the public health tables shift enough to account for all of our multiplicities? Will the community organizations be brave enough and forward thinking enough to embrace change thoughtfully? Will there be any public education social marketing campaign about the benefits of current treatment (rather than emphasizing side effects in stigmatizing tactics a la the New York City Department of Health & Mental Hygiene)? Will we continue to allow stigma to reduce the value of our voices and our passions in the vain attempt that we can fit in?

Written by: Dr. Andrew Spieldenner
@aspield

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s