The Importance of AIDSWatch: Reflecting on 2013

The following statements from AIDSWatch 2013 participants highlight the continued importance of a federal advocacy event dedicated solely to HIV/AIDS. We hope that you will be inspired by their stories and will join us next year for AIDSWatch 2014!

Lucy Baglin – Illinois Coordinator, AIDS Foundation of Chicago

“As a first year participant of AIDSWatch, I walk away from this event feeling more inspired than ever. The sense of camaraderie among the HIV/AIDS community was enlightening, and being a part of the resilient Illinois team was an honor.

Alongside the legislative issues at hand, Illinois advocates chose to bring their personal stories to legislators, to put a real person behind the policy, and to pack an even greater congressional punch. When advocating to protect HIV services, an advocate and constituent from the small town of Decatur, Illinois, bravely told her U.S. Congressman how Ryan White Programs saved her life. That she would not be sitting in his office right now without them, and that protecting these funds was critical for her and hundreds of thousands of others living with HIV/AIDS. She asked for this congressman’s support, and I don’t doubt that her story will come to mind when these issues are brought to his table.

AIDSWatch also honed my advocacy skills, and those of my Illinois teammates. We had practiced what we would say, and how we would make the ‘ask’, but when meeting legislators the conversation may not always go as planned. However, as a team, and as individuals, our advocacy and delivery got stronger with each meeting. We tailored our messages to be more effective, and knew how and when to back someone up on an issue. We left each meeting feeling increasingly confident, and by the end of the day we felt like HIV/AIDS Rock stars.”


Marsha Martin – Director, Urban Coalition for HIV/AIDS Prevention Services (UCHAPS)

“UCHAPS was pleased to participate in AIDSWatch this year. We had the opportunity to meet with the leadership in the House and the Senate, providing them with the latest prevention and treatment science, community budget ‘ask’ and express concerns about the impact of the sequester. Among those we had a chance to briefly express our views was Senate Majority Leader Harry Reid, fresh off the floor of the Senate. This was a unique opportunity only possible through the masterfully planned and scheduled AIDSWatch 2013. Visiting the Hill with others from across the US, nearly 200 Republican and Democratic offices, reminded the Members and their staff that we care and we will continue to raise our voices to ensure people living with HIV and those who serve them in government and community agencies receive and keep the resources they need.”


Carolyn McAllaster – Director, Southern HIV/AIDS Strategy Initiative

“SASI (Southern HIV/AIDS Strategy Initiative) was well-represented at AIDSWatch 2013! We had delegates from all of the Deep South states except Mississippi. Our advocacy is important in light of the fact that the South has 46% of new HIV diagnosis while representing only 37% of the US population. We held a SASI meeting to talk about how the AIDSWatch policy agenda affects our regions—the refusal of some Southern states to expand Medicaid, the continuing need for Ryan White Program funding and for all the funding streams identified by AIDS United. We added to our legislative agenda the need to change the HOPWA funding formula so that cumulative AIDS cases are no longer in the mix. SASI representatives also met with Dr. Grant Colfax, director of the White House Office of National HIV/AIDS Policy and with Dr. Ron Valdiserri, Office of HIV/AIDS and Infectious Disease Policy, to first thank them for the new CDC Care and Prevention in the United States Demonstration Project (CAPUS) grants focused on the South and to urge the creation of a convening to bring together federal, state, local and community experts to discuss interventions for the HIV crisis in the South.

I was very pleased with the response received from the North Carolina congressional delegation. Senator Kay Hagan met with us personally and promised to champion the Ryan White Program. We also met with Representatives David Price and Mel Watt, and with legislative aides in Senator Richard Burr’s and Representative Butterfield’s office. Everyone we met with understood the importance of continuing Ryan White Program funding, prevention funding, and changing the HOPWA funding formula.

AIDSWatch is always a powerful experience for me. Watching the energy that builds as we get our training, meet with our state colleagues to formulate our visit strategy, and then actually making the visits is impressive. I also love watching first time attendees realize the advocacy power they can have by just telling their stories. Thanks to TAEP and AIDS United for a well-run AIDSWatch and for bringing us together once again to hold our elected representatives accountable!”


Daniel Nugent – Senior Policy Manager, National Minority AIDS Council

“AIDSWatch 2013 provided an extraordinarily well timed opportunity for PLWHA to offer legislators a personal perspective on the human impact of the impending sequester’s effect on domestic HIV/AIDS programs. As the sequester was slated to take effect within days of the Congressional visits, there was an exceptional relevance and immediacy to constituent narratives about the importance of the Ryan White Program, particularly ADAP benefits that many constituents utilize. AIDSWatch 2013 offered a perfectly timed occasion for constituents to advocate not only on behalf of federal programs most important to ending the epidemic, but also provide perspective on the personal impact the sequester will have on PLWHA.

AIDSWatch 2013 married national policy perspective with state and local acumen to paint a complete impact portrait of sequestration for congressional offices. In particular, AIDSWatch participants were able to relay the landscape of care and treatment services on the ground to both Senator McCaskill and Blunt’s office, providing unique local perspective on the impact of national cuts to HIV/AIDS programs throughout Missouri and what those cuts would look like to programs in centers such as St. Louis. The local perspective resonated with congressional offices.”


Carole Treston – Policy and Advocacy Consultant, Association of Nurses in AIDS Care

“The Association of Nurses in AIDS Care (ANAC) was proud to participate in AIDSWatch 2013. Six ANAC members participated in visits to ten Senate and six House offices and attended the Congressional briefing. We joined with other advocates and consumers and at each visit we presented the perspective of nurses on key issues in HIV prevention, care and research. We educated Hill staff on the remarkable advances in treatment and prevention for our patients as a result of NIH funded research. We described how we are on the verge of achieving an AIDS-free generation and making a dent in new HIV infections through Treatment as Prevention and how critical adequate funding is to implement it on a large scale. We gave first person testimony about the critical role that services such as case-management, transportation assistance, medication education, peer linkages and other Ryan White Program funded services play in getting our patients into our care sites and staying in care. We stressed science and evidence over politics in prevention as we urged for the lifting of the ban on federal funding of syringe exchange programs and described the barriers to testing and linkage and retention in care that HIV criminalization presents. We advocated for full implementation of the Affordable Care Act (ACA) and described the current role of nurses, nurse managed programs and AETCs now and in the expansion of care that we expect will occur with the ACA. It was a great honor to represent just a tiny bit of the commitment of the thousands of nurses in HIV care and we already are planning for more involvement and representation in AIDSWatch 2014!”