Monday, April 28, 2014

Advocacy at its finest: 30 for 30, PWN, and others work hard to #SaveRyanWhitePartD on 1st day of AIDS Watch!

The first day of AIDS Watch was a very productive one for Part D advocacy.  A number of advocates involved with the Save Ryan White Part D movement and like-minded allies led a number of activities at AIDS Watch to oppose the elimination and call attention to the needs of the population Part D serves--women, infants, children, youth (which includes teens and young adults), and their family members/caregivers.  The day prior to the beginning of AIDS Watch, Positive Women's Network unveiled a hashtag that would be used to follow women-centered AIDS Watch events, #pwnspeaks, and also welcomed and oriented a number of new and returning AIDS Watch attendees interested in women's issues as well as Part D advocacy.

The morning of AIDS Watch was kicked off with a breakfast for attendees, followed by an opening speech by Douglas Brooks, the new Director of the Office of National AIDS Policy.  As an openly HIV+ individual, his appointment to this position is significant to many.  Brooks emphasized the President and ONAP's commitment to PLHIV, and highlighted accomplishments as well as challenges and goals.

Next, two panels were held to provide updates for pertinent HIV policy issues.

The first panel addressed the Ryan White CARE Act (Ann Lefert, NASTAD), the Affordable Care Act (Malinda Ellwood, TAEP), and HIV Criminalization (Robert Suttle, Sero Project).

The second panel addressed Comprehensive Sex Education (Jesseca Boyer, SIECUS), Stable Housing (Nancy Bernstine, NAHC), Syringe Exchange (Bill McColl, AIDS United), and Budget & Appropriations (Donna Crews, AIDS United).

Through the opening and both panels, advocates incorporated the voices and concerns of the Part D population into all discussions and Q&A: specifically talking about Part D during the Ryan White CARE Act panel; discussing gaps that may remain for vulnerable groups even with ACA implementation; sharing data related to sex education and youth outcomes, etc.

In addition, social media was all ablaze, with positive women leading the pack in terms of tweeting and posting status updates on relevant AIDS Watch happenings, statistics, quotes, thoughts, and ideas.
After the policy briefings, Naina Khanna, executive director of Positive Women's Network-USA co-hosted a training with John Peller of AFC on how PLHIV craft and share their personal stories as a tool for advocacy.

After lunch, the 30 for 30 Campaign led a #SaveRyanWhitePartD panel that allowed positive women, allies, and providers to discuss the elimination and consolidation with HIV/AIDS Bureau (HAB) and Health Resources and Services Administration (HRSA) officials.  It was a pleasant surprise to have Douglas Brooks attend this important meeting about Part D.

The 30 for 30 advocates were ON FIRE!  They spoke candidly about the impact of Ryan White Part D on their personal lives and communities, and they raised important questions and concerns.  In turn, HRSA listened and stated their position.  One important point that was raised by HRSA is that Part D providers need to find a more concrete way to "prove" the effect of their programs, documenting how they support linkage and retention into medical care.

Overall, the meeting was extremely productive, and illustrated the strength of advocates when we unite, as we did today to Save Our Services!  And with regular social media updates that were frequently retweeted and shared throughout the meeting, the advocates present were intentional about keeping the community informed whether or not they were in attendance at AIDS Watch!  We have created a Storify to serve a "tweet summary" of the most salient updates separately for those interested.

Tonight's AIDS Watch activities conclude with an additional briefing as well as an award ceremony to honor two outstanding public officials: US Representative Henry Waxman, US Delegate Donna Christensen, and two outstanding community leaders: Robert Suttle and Tre Alexander.

Tomorrow there are additional opportunities to advocate and work to #SaveRyanWhitePartD through a listening session and legislative visits on the Hill to the offices of Congress officials who have the power to stop this elimination when they begin budget deliberations next month!

Stay tuned for tomorrow's news!  We are so proud of our diverse, passionate, motivated advocates who are standing up for women, youth, and families to #SaveRyanWhitePartD!

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