This year was the first year that I attended the ADAP Advocacy Association’s (aaa+) annual conference. I went there knowing that some states have AIDS Drug Assistance Programs (ADAP) that are under some questionable measures and are causing many who need meds to be put on waiting lists and even some who have been experiencing trouble accessing care. My purpose in attending was to learn ways in which to support as an ally and advocate for family members, friends, and those that I work with in regards to ADAPs and the possible changes to come with the implementation of the Affordable Care Act (ACA) and Medicaid expansion. Little did I know that attending this conference would touch me way beyond the spectrum of my current position as linkage to care coordinator, and allow me to connect with true champions in the fight against AIDS and become more empowered than ever before.
Day 1: Right from the start of the first plenary session I was introduced to Bob Bowers, One Tough Pirate, AIDS activist, educator and survivor. Living in the small city that I am from, I had never met such a warrior, so full of ambition, motivation, and courage to stand up speak on his combat for justice for himself and those living with HIV/AIDS. He absolutely blew me away. He was so real and so blunt that I almost wasn’t ready, but I knew that if he could get on stage and be so passionate about this fight, that I had to become more than just a health department worker; I had to become a rebel against those opposed to true nurturance, the true belief that diversity of any kind is indispensible to a truly healthy society.
But that wasn’t all! The rest of the day consisted of breakout sessions on the topics of Africa’s use of technology to provide continuity of care – the use of an electronic health record system where clients utilized a simple health card to take to appointments that kept track of all their dates of visits, lab results, etc.; and HIV medication self-management – how individuals in one community were able to create their own intrinsic/holistic ideals of empowerment to deal with their diagnosis and manage care, all from many different walks of life. The day ended with the wonderful launching of the ADAP directory…
The fabulous invention of aaa+, a resource page full of word lists and links that handily locate AIDS Drugs Assistance Program information for all US states and territories! This is a way for those newly diagnosed or currently living with HIV/AIDS, those who are moving, plan on moving to another state, or just need to locate info within their own state, to review all the ADAP information and find ways of locating healthcare coverage and other financial sources; to improve the quality and accessibility of HIV/AIDS healthcare and support service organizations; and provide grant information. The best part is that the creators of the site are connected to the states info in a way that they are able to keep the information listed online as up to date as possible. So…as soon as something changes, their notified and updates are made!! How awesome is that?!?!? This is a way to keep people connected and even aware of changes that may need to be made or added in their areas. That’s true advocacy at work and making sure that we’re starting to push toward creating consistency across the US and its territories!
Day 2: Lots of information provided this day! A rep from the National Alliance of State and Territorial AIDS Directors (NASTAD), “the voice of the states”, provided and excellent presentation on AIDS Drug Assistance Programs. As of February of 2014, only one state has a waiting list consisting of 35 people and other states that had previous lists are now on cost containment measures. Meaning they have put a plan in place to attempt to avoid tight budgets and not being able to provide everyone with the care and medication that they need.
More good news concerning this program is that as of 2013, the ADAP budget (consisting of Federal, state, and rebate dollars), exceeded a budget of 2 billion dollars for the first time! This means funding for the program is steadily increasing to where care and meds can be provided to those who need it within the ADAP income eligibility range of the federal poverty level. We as advocates just need to be sure that within our own states, the money is actually reaching the people!
The day continued on with powerful breakouts from organizations such as Positive Champions Speakers Bureau (http://www.positivechampions.org), a group of HIV positive people who share their first hand experiences and the effects that HIV has on communities. They work to educate their community on the issues of living with HIV & AIDS and work to fight against stigma. This breakout allowed the speakers themselves to not only share, but also engaged the participants to share and connect as well.
I could go on and on but because there was so much information shared that I believe was helpful to both PLWHA and allies….but I don’t want to take up too much of your time lol. So I’m listing some websites that I believe are truly beneficial and that you should definitely checkout:
www.speakup.org – enables youth to make positive life choices and parents and educators to support them as they navigate the journey to become happy, confident adults (great resource)
www.needymeds.org – a national non-profit organization maintained website of free information on programs that help people who can’t afford medications and healthcare costs
http://www.panfoundation.org/ – offers assistance and hope to people with chronic or life-threatening illnesses such as HIV/AIDS in which costs is the reason for limited access to advanced medical treatments
http://www.lambdalegal.org/ – founded in 1973 as the nation’s first legal organization dedicated to achieving full equality for lesbian and gay people
Later that night, I met this fabulous guy…
a fighter, an advocate, a trailblazer, a survivor…the true definition to me, of a believer. He is a believer of life, a believer of living, and believer of the fight being bigger than just himself. I was honored to have sat with him at the 4th Annual ADAP Leadership Awards dinner as he accepted the award for Social Media Campaign of the Year for himself and his co-creators of the The Poz Life. P.S. – you guys are doing amazing things!
Day 3: The conference ended with a town hall meeting in which all attendees met to discuss issues and set plans to go home with to continue working, begin new initiatives, and move forward in empowering others to join in this movement towards social/civil justice and equal rights.
So…as I left DC and headed back to my little old city, I thought about how if associations such as aaa+ remain in the fight to ensure care and funding is available, accessible, and awarded to those in need, programs such as ADAP have no choice but to remain. But we also have to become part of the battle and we can’t be afraid to speak up. If we remain in the background, watching as others struggle for our rights and necessities, then what are we doing? Why aren’t we helping? Are we really a part of the fight? Are we really standing up for what we believe in? If not, I think we have to then start asking, what do we believe in? What is our purpose? I think if we follow the quote made by Dr. Martin Luther King, Jr. and read by the keynote speaker of the awards dinner, John D. Kemp, we can only go up from here…
“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”
By moving forward, we work towards growing our communities from repulsion, to tolerance, to acceptance, to support, to admiration, to appreciation, to true nurturance for all – believing that diversity is indispensible to a truly healthy society. And in order for our society to truly be healthy, we have to all have all be treated as equal and have consistency in access to medical care, medicine and other resources that keep us living in this fight TOGETHER!
On another note…I LOVE DC AT NITE!!!