Print this page    •   Back to Web version of article

ADAP Advocacy Is Alive and Well
A Report on the Fourth Annual ADAP Advocacy Association Conference

By Sue Saltmarsh

September/October 2011

ADAP Advocacy Is Alive and Well

The ADAP Advocacy Association (aaa+) held its fourth annual conference in Washington, D.C. from July 5-7. Approximately 125 HIV/AIDS advocates, HIV-positive people, pharmaceutical partners, providers, and organizations attended. The conference included up-to-date information about the crisis, as well as possible solutions.

Additionally, aaa+ hosted its first Annual ADAP Leadership Awards Dinner on the last night of the conference. The first Leadership Award winners included:

Finally, the conference ended with a Congressional Briefing, followed by advocates and patients marching up to Capitol Hill to speak for themselves about the importance of ADAPs. The briefing was headlined by Britten Pund from NASTAD, Darryl Fore (Ohio ADAP patient), Kathie Hiers from AIDS Alabama, Dr. Bambi Gaddist from the South Carolina HIV/AIDS Council, Joey Wynn from Broward House, and Chris Aldridge from HealthHIV. The speakers respectively covered the ADAP crisis from the policy, patient, regional, public health, provider, and social worker perspectives.

Brandon Macsata, aaa+ CEO, spoke to PA to give his impressions of the conference and the work that still lies ahead.

Sue Saltmarsh: So tell me about the conference!

Brandon Macsata: Well, while it seems to get better every year, it was frustrating to convene a conference and have the wait lists be double what they were last year, especially after all the efforts we've been doing nationally, as well as in many states vigorously activating their grassroots networks. So in that sense, it was kind of a somber experience. But it also gave us an opportunity to look back and say, "Well, considering that so many programs are either being level-funded or drastically cut at the federal level, the fact that we were able to secure $50 million in new money was a testament that what we're doing is working." It may not be working as much as we would like and some of our progress at the national level might be offset by some of the cutbacks at the state level, but nonetheless, I think people were inspired and re-committed to continuing the fight.

Advertisement

It was good to see a lot of the veterans who have been involved for years and typically have come to all our conferences, but we had a lot of new faces, people who came from states like Nebraska, Oklahoma, and, as expected, there were large delegations from Florida, Ohio, Virginia, and South Carolina, which have four of the largest waiting lists in the country.

I also think the caliber of the speakers gets better every year and clearly this year was no different. We had the former Surgeon General [Dr. David Satcher]; Jeffrey Lewis, former CEO of the Heinz Family Philathropies -- the whole Wellvista solution was his brainchild -- and I think people really took a lot away from the conversations and presentations because they got a combination of the legislative nuts and bolts, the advocacy do's and don't's, the forward-thinking speeches, and then also some of the practical applications on what you can do to really become involved. We were really pleased.

SS: Did any of the politicians attend?

BM: Congressman Alcee Hastings from Florida was there and received our first Lawmaker of the Year award. He was one of only 82 members of the House who signed Representative Donna Christianson's "Dear Colleague" letter when we were trying to get the emergency supplemental funding; he was the only member of the House to speak on the floor about ADAP last year; and, of course, he submitted the [successful] amendment calling for $42 million in new ADAP funding, so he was the odds-on favorite to win that award. He gave a great, fiery speech -- spoke for probably 15-20 minutes -- and got a standing ovation when he was done.

SS: Do you have any idea of pending legislative efforts in the works that you expect to see before the end of the year?

BM: I don't know if it will be legislatively. We seem to be putting a big push on trying to leverage our relationships in the Congress to have them in turn pressure the administration to re-program money like they did last year. It's probably quicker that way, probably more realistic in light of the budget-cutting atmosphere on Capital Hill.

Senator Marco Rubio of Florida just sent a letter to Secretary Sebelius [Health & Human Services] basically asking her to re-direct funding to solve the problem. We feel we're making some headway. Clearly, we're going to continue to push the legislative agenda, but we think we'll have more success using the legislative branch to influence the executive branch.

There was very discouraging news from the White House, according to the AIDS Institute, that of the $25 million of the new money that was appropriated for the current fiscal year, which is sort of earmarked for states that have waiting lists or other cost containment issues, the administration is only allowing up to $3 million per state. In a state like Ohio, or Virginia, or especially Florida or Georgia, where the waiting lists are in the thousands, that's problematic. Three million dollars will go a lot further in Iowa than it will in Florida, and now there are reports that even more people will be kicked off the list in Florida.

People are really absolutely beside themselves that we have a Democratic president for whom two of his major constituencies are the LGBT community and ethnic and racial minorities, both of whom are disproportionately impacted by this ADAP crisis, yet still nothing is being done about it.

SS: I know it must seem at times like an insurmountable battle and I certainly respect and admire you for continuing to fight the way you do. Has there been any word from our ally, Senator Burr?

BM: Senators Burr and Coburn are still monitoring this and we've put Senator Rubio's staff in touch with Senator Burr's staff in light of this letter. Being that Rubio comes from the state with the largest waiting list and, unfortunately, Senator Nelson [Florida's other senator] has been kind of MIA on this, we asked Senator Rubio how his staff would like us to handle it and they asked to be able to coordinate with Burr, so we put them in touch. We're having some back-channel discussions with Burr's staff and there's definitely still commitment to it -- I think there's a commitment on both sides of the aisle and in both the House and the Senate. So you have to wonder how come we can have bicameral, bipartisan support and still we can't get the ball over the goal line, especially when all we're looking for is $100 million to eliminate the waiting lists as they are. The number is much higher, in the $300 million area, if you're looking at eliminating the waiting lists and getting rid of the structural deficit that has existed over the years.

So, yes, it gets frustrating, but I will tell you that the conference, especially the awards dinner, was extremely uplifting. Too often we focus on what we're doing wrong, or failures, or who we're pissed off at, whereas this gave us an opportunity to say, hey, there are some leaders, there are some people who are really making a difference and it definitely energized a lot of people when they left.

As this article was posted, there were 9,141 people on waiting lists in 12 states.




This article was provided by Positively Aware. It is a part of the publication Positively Aware. You can find this article online by typing this address into your Web browser:
http://www.thebody.com/content/64296/adap-advocacy-is-alive-and-well.html

General Disclaimer: TheBody.com is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through TheBody.com should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, consult your health care provider.