Friday, June 3, 2011

Only Self-Advocates Can End the ADAP Waiting List Crisis

Ask anyone who currently works or who has worked on Capitol Hill and their answer will be the same. Constituents matter! In the 1978 groundbreaking analysis, Home Style: House Members in their Districts, political scientist Richard Fenno demonstrated the importance of various constituencies within a congressional district and how they impact Members of Congress. That is where former Speaker of the U.S. House of Representatives, Tip O'Neil got it right: All politics is local.

High-powered lobbyists are important. Clearly, advocates representing national organizations are important. But no single group is more important than the constituents residing in a Member of Congress' district, or state. In 2006, 2008 and 2010, there were three consecutive "change" elections, and many political pundits are predicting that 2012 just might be another. And that's why people effected by and affected by HIV/AIDS need to reserve their respective seats at the table. It’s about building relationships, solidifying constituencies, and influencing key decision-makers in Washington, D.C.

The ADAP Advocacy Association's 4th Annual Conference - being held in Washington, DC on July 5-7th - represents one, among many, opportunities for people living with HIV/AIDS to become more involved in the process. Members of Congress and their professional staffs would much rather speak directly to their constituents than "playing nice" with DC-based professionals. The conference theme, When will Washington come to the rescue?, was intentionally named as such because it highlights one of the biggest drivers behind the ongoing crisis facing the AIDS Drug Assistance Programs: lack of federal funding. Keep in mind, federal funding as a percentage for ADAP decreased from 72% in 2005 to 49% in 2010.

In essence, aaa+ understands that the ADAP crisis isn't about politicians, or pharmaceutical companies, or community AIDS Service Organizations - in fact, it isn't even about the funding itself. Rather, it is about the very people living with HIV/AIDS living in the United States who rely on the program to remain healthy, productive residents in their communities back home. What aaa+ hopes to accomplish with its 4th Annual Conference - and other programs - is to create an army of self-advocates who can end the ADAP waiting lists. After all, it is back home where they can most influence the decisions that adversely impact their daily lives.

Used in this context, self advocates can be defined as people living with HIV/AIDS, acting or speaking on issues that affect them or other people living with HIV/AIDS. Said another way, self advocates are people that communicate on behalf of themselves and others like themselves. Self advocacy has four integrated parts:

  • Strong self advocates are speaking up and speaking out

  • Community integration by participating in the community

  • Being part of a group to find support

  • Everyday opportunities and the expectation to be self advocates

  • In preparation for conference, all ADAP stakeholders - but especially people living with HIV/AIDS - are invited to learn more and hopefully participate. The agenda is available online, as well as the registration form (if you're a pharmaceutical company representative, click here). For those ADAP stakeholders seeking a detail explanation of why the conference is focused on the federal appropriations, please review the conference summary.


    Mark S. King said...

    The importance of advocating for ourselves is a lesson we (should have) learned from our first generation of AIDS activism. We, largely as persons with HIV/AIDS, insisted on HIV research and care -- and as a result created tools like fast-track FDA approval and the kind of patient advocacy that serves as a model for every disease category today.

    "When Will Washington Come to the Rescue?" is ironic in another sense. DC will never rescue us unilaterally -- we're the ones who must persistently demand it. I appreciate aaa+ giving us some practical tools to keep doing just that.

    Leander in Arkansas said...

    "When Will Washington Come to the Rescue?" The answer is ..."Too late...or NEVER." My dear friend Larry lost the battle. His memorial was Tuesday. Two more people lost their meds. They were dropped from ADAP, to be added to the 55 currently on our state's ADAP Wait List, along with the 60% not in care. AR, like the rest of the South, has thousands of "invisible" people that do not show on the "ADAP Wait List" because they are ineligble to apply. (The rules changed from 500% to 200% of FPL.) MS, one of the poorest states in the nation shows NO ONE on the ADAP Wait list. Oh, please! Does anyone believe all the Positives in MS are able to get meds??? Like AR, that state has "invisibles" too!!! The "Wait List" is bogus and we should all be SCREAMING "BS!" Small wonder "Washington Will Not Rescue." They can't SEE the problem!!! To them, what is less than 8,000 people wanting medicine when there is a whole country full of people also in need of help??? Floods,fires, disasters galore, cancer & every disease known to man, plus education, highways, & whatever can be named has someone begging for funding. We consistently provide grossly inaccurate data, yet expect favorable results. That's got to be a new defination of insanity....or mass stupidity. Until we wise up and have every state provide REAL numbers of people in need of ADAP, we are WASTING the time of everyone involved. For a decade I've talked to Congress till I'm literally about sick to death of this. Get us some REAL numbers and correct data. Make us CREDIBLE before asking one more Positive person to speak to a Legislature again!!!