Ryan White 2016: Moving Forward
Here are the numbers from the 2016 national Ryan White Conference: 4 days; 190 workshops; 4 plenaries; 150 posters. Also available is a Clinical Pathway that is available online in case you missed it, and a call to action to end the nation’s opioid epidemic.
Laura Cheever, head of the HRSA HIV/AIDS Bureau, presented those data to more than 2,400 conference attendees in a summary that focused on programmatic advances in HIV care, treatment, and prevention along the continuum. “We have the tools to end the epidemic,” she said, reflecting a view that was shared by many other speakers.
What did 4 days of meetings and 26 years of the Ryan White HIV/AIDS Program (RWHAP) mean for hundreds of thousands of people living with HIV? Who would have imagined, 22 years ago, that "a 28-year-old black chick is standing here because of Ryan White,” said Gina Brown, one of this week’s plenary speakers, who earlier presented on her experiences and path to health equity. Other attendees shared thoughts in a final plenary video montage. Unfiltered, here’s a sampling:
- “If there’s anything positive that can be said of Ryan’s passing, it’s because people can live now.” -- Jeanne White Ginder, Ryan's mother
- “The data helps tell us…what we can do to help all PLWH.” -- Heather Hauck, HRSA/HAB Deputy Associate Administrator
- “If the world were the Ryan White program, we would have the end of the HIV/AIDS epidemic.” -- Anthony Fauci, NIAID Director
And others commented on what has been learned and what is still needed:
- “Everybody has the same type of goal and same mentality.”
- “I can’t forget…people in the background.”
- “We need to focus more on our behavioral interventions” to discover why people are still acquiring the virus.
Deputy Surgeon General Sylvia Trent-Adams gave the closing plenary address, expressing some thoughts on the program’s future. Trent-Adams, former HRSA HAB Deputy Associate Administrator, knows something about the RWHAP given her 22 years at HRSA’s HIV/AIDS programs, observing that “people have options and opportunities to live healthy and productive lives” because of the RWHAP.
Trent-Adams focused on the continuing need to address health disparities, observing that, if we do not have the same ability to prevent disease and secure services, “we are falling short of a core American value.” She noted that, although “zip code matters more than genetic code” in terms of health equity, culture change is possible, much like the progress seen in other areas, from seat belts to cigarettes. Trent-Adams called for even more innovation than we’ve seen to date, although adopting increasingly sophisticated programs brings inherent challenges.
But creating new models and making change happen, said Trent-Adams, is not new to the RWHAP, which she called “the basis for PEPFAR,” and a proving ground for the efficacy of AZT in pregnant women living with HIV to greatly diminish mother-to-child transmission under ACTG076. In addition, RWHAP established consumer involvement as a core principle in health care planning and delivery, created innovative models of managed care in the 1990s, and of course, helped bring many successes in implementing the Affordable Care Act.