This blog post was written by Jacob Barrera, a current student in the Health Law and Policy Clinic. Jacob is pursuing his Masters of Public Health from the Harvard T.H. Chan School of Public Health.
AIDSWatch is a two-day event on Capitol Hill where advocates come together to share their truths and to advocate for the changes needed to end the HIV epidemic in the United States. The first day was comprised of plenaries and break-out sessions. These sessions had a huge impact on my experience on AIDSWatch, which can be described in two words: empowering and uncertain.
Let me explain. The first afternoon session that I attended was entitled Self-Advocacy with your Health Care Provider, led by William McColl, Director of Health Policy at AIDS United. Personal stories were shared that helped contextualize the everyday experiences people living with HIV had with their doctors. No one person’s experience was the same as another’s, showing the range in standards of care and therefore a lack of standardization amongst the medical profession in treating people living with HIV. What was interesting to note from the anecdotes was that as the years went by and the science around HIV improved, so did the communication between patients living with HIV and physicians.
Some people recounted their first experiences with their physicians after being diagnosed with HIV. From these early experiences, people took whatever medicine their doctors prescribed, not knowing any better as the science was barely starting to get off the ground. As the science improved and more medications became available, people living with HIV began to do their research, working to figure out the pros and cons of each medication and how it would affect them.
As the years progressed, people living with HIV began to educate their physicians about the medicines available, involving themselves in the shared decision making process. This change in demeanor and communication in the span of a few decades is what I found to be empowering about AIDSWatch.
Here I was in a room with so many people living with HIV and their allies, recounting experiences, yet simultaneously thinking about ways that we could improve the system, like improving medical education to include modules on how to treat people living with HIV and how to communicate effectively and empathetically with people living with HIV.
Now let me explain why I was overcome with a feeling of uncertainty at AIDSWatch. At Mixing It Up with the Leaders of Tomorrow, a breakout session I attended put on by the Human Rights Campaign, advocates—veterans and newcomers alike—gathered to talk about advocacy, where it is, and where it is going. There was a consensus among participants that the advocacy movement as it stands is strong, which was evidenced by the more than 650 advocates from 34 states, D.C., and Puerto Rico. However, when we were asked to write one word that represented youth leadership in advocacy, the overarching answer was startling: uncertain. When we talked about this as a group, we talked about how many veteran advocates are unwilling to pass on the baton to the next generation of leaders, allowing for them to take hold of the reins and to impose their own ideas on how to continually move the agenda forward.
Without veteran advocates passing on their knowledge, their expertise and their experiences down to a new generation of leaders who are willing to take up the fight for HIV, will we see the movement dwindle?
Although the second breakout session cast a shadow of uncertainty on the movement, it brought many veteran advocates to reach out to, the up-and-coming leaders in the movement to form mentorship relationships.
The second day was comprised of visits to Congressional leaders on the Hill where we advocated for AIDSWatch asks: insurance coverage and access to health care, critical HIV programs, education, decriminalization of HIV, and funding for research. My first, and most memorable, visit on the Hill was with Senator Markey’s staff. As we were explaining the importance of funding and the lack of people on PrEP, Senator Markey walked through the door! He reaffirmed his stance on fighting for funding for critical programs like Ryan White and NIH research. As Senator Markey put it, “A dream without funding is just a hallucination.” This is particularly true for HIV. If the U.S. were to stop or significantly reduce funding the research necessary for finding a cure, our dream of ending the epidemic would become a “hallucination.”
AIDSWatch was an experience that I will not soon forget. The relationships that I established are ones that I will continue to develop and nurture as I continue my work within the HIV community. I also hope that this post brings a sense of urgency among veteran advocates to mentor the youth who are interested in taking up the baton and advocating for the rights of those living with HIV. Being in that room with so many advocates talking about the uncertainty of the movement among our youth leadership was astonishing. Picking up the baton and passing it on to the next generation will assure that the movement will continue to grow and prosper.