June 29, 2010
I am freaked by the 1840 folks on ADAP waiting lists (as of June 24th)*. I just never thought this would happen in America. I can't imagine the fear and anger you must feel when you have to piece together your medications through various patient assistance programs. Thanks to everyone who keeps this dysfunctional system working, you are my heroes. This is just one of many issues impacting our work.
I hear we may have a solution for this year's ADAP crisis. It will probably be a one year solution. Not to seem ungrateful and we appreciate any solution that removes people from waiting list, but that means we will have to go back in 2011, 2012 and 2013. I am exhausted by the annual begging. I am scared that one year we won't find a solution and my friends will not get the right medications or will not get them in a timely fashion. It is time to figure out long term solutions, not to ADAP, but to our movement's needs for more grassroots organizing that supports national, state and local policies.
I would like to offer this year's United States Conference on AIDS (USCA) as a place to bring together CBOs, health departments (HDs) and people living with HIV/AIDS (PLWH/As) to have discussions on how to build more local networks that can respond to national, state and local challenges.
If we don't build more local networks (beyond those in large states or big cities), in a few years we may not have much of a movement to support. Only this morning, we received another email of an agency closing its doors. At this year's USCA we won't have any fancy events, it does not seem appropriate; but we will plan many opportunities to listen, build coalitions and define common strategies. Please come prepared to work.
Twelve national executive directors (EDs) (more to be announced) will attend this year's meeting so they can better understand what it means to fight HIV/AIDS on the frontlines. This year we will be joined by:
These EDs are committed to building effective local responses to national, state and local challenges. This is not to take the place of important organizing that is already happens; but to add to existing networks or to build new ones where none exists. If we are going to address ADAP, National HIV/AIDS Strategy and fight state budget cuts, it has to start in local communities and include CBOs, HDs and PLWH/As.
I know, it's so much easier to stay home and let the other guys do it. The problem is that we are running out of other guys. Our leaders and our founders had the courage to stand up when everyone said it was hopeless. Now it's our turn or maybe it's our turn again (for all you old queens). What would have happened if Act-Up stayed home? If AIDS Action wasn't created? If NMAC decided to let the other organizations take care of people of color? We will not agree on all the issues or strategies, but we all know that without strong local organizing our movement will continue to flounder, our organizations will continue to close, and people with AIDS will stay on waiting lists.
We need strong community based organizations. In tough times, the organizations that survive are those that:
If you don't have at least one of these things, your organization is in danger. You can have all three and still not survive. This year at USCA we have:
We cannot do our jobs in a vacuum. It is essential to learn about the latest issues, cutting edge techniques, and new policies and/or guidelines. This year's USCA will have an ADAP track, workshops on Prep, and an examination of policies and guidelines around test and treat. This diversity of trainings is an essential component to USCA.
Not only do we have a diversity of topics; but they also are taught in a language and process for community. Have you ever gone to a lecture and not understood what they are saying? Scientist and researchers have their own language and way of learning, well so does community. All of the presenters are told that their sessions need to be interactive and in a language that community understands. In other words, this meeting targets the way you learn.
With money so tight, it is important to get face time with funders. I give good face, it's an important part of my job.
USCA brings together many private and public funders. This year we will have officials from SAMHSA, CDC, HHS, HUD, NIH, OAR, OWH, OMH, and others federal agencies. If you don't know these initials, it's time to learn them. Together they provide the most HIV/AIDS funding in America. Where else can you go and see them all at one meeting?
We will also have private sector funders. Right now we can confirm Boehringer Ingelheim. Flowers Heritage Foundation, Gilead Sciences, Merck & Company, OraSure Technologies, Tibotec, and Trimeris/Genentech. In no way does your participation guarantee funding, in fact most requests will be turned down. However, if a funder doesn't know you, I can guarantee you won't get a check. This is particularly true for individual donors and corporations/foundations. With many of them, it is about building relationships and trust. There are too many requests for support, as a result, donations often go to agencies they know and respect.
If you come to USCA, come with a strategy. Schedule meetings in advance with leaders important to your organization. Bring materials about your programs and your agency. Work the receptions; don't just talk with your friends. Reach out to potential donors or other officials who can help your agency grow. Nobody can work a room like Paul Kawata. Its not that I like this task, but I understand that it is part of my job. No matter how good your programs, how great your staff, or how valuable you are to your clients, without money you cannot run your agency.
You may say "who cares?" National organizations don't help me. Why do I need to meet national executive directors? The simple answer is money and policy.
Who gets included in the room when the final decisions are being made in Congress? How do you get language in legislation that supports the reality of your work? Part of the answer is your national organizations working with local, state or regional partners/ constituents.
Get to know your national organizations. The successful ones understand that you are key to our movement's success. If we don't organize in certain critical Congressional districts, we will continue to chase our tail and put BAND-AIDS on wounds that need stitches.
With 1840 people on ADAP waiting lists, CBOs closing their doors, and a new national HIV /AIDS strategy, our community needs more collective analysis and political strategies. How as a community are we going to address these issues? Come to USCA and gather information on other organization's analysis. Bring your experience and give input into the strategies being considered to address these challenges. With close to 2500 attendees, USCA is a powerful space that brings together diverse segments of our movement. It is not the only space, but it is the largest one. Imagine what we could do if 2500 organizations signed onto our letters. If 2500 CBOs called on their members in Congress.
What if we got all the national organizations to agree to have 2011 be the year that we build local networks. We could have a common theme at all our annual meetings, something like "Building Local Networks That Can Respond To Local, State and National Challenges" (Ok, we will figure out better wording). This could lay the ground work for 2013 reauthorization and/or be the leverage we need in certain critical Congressional districts.
If you want to talk, please call me at (202) 483-6622 ext. 321 or e-mail me at firstname.lastname@example.org. I don't have the answers, I just want to offer USCA as a space to start thinking differently. Join us at this year's meeting and be part of the solution.