|
Don't Wait Until 2012 to Reauthorize RW
An Op-Ed by Christine Campbell, Housing Works Vice President of National Advocacy and Organizing
September 18, 2008
Last week I attended a Federal AIDS Policy Partnership Ryan White Work Group Community Consensus Meeting. But maybe I should not have been allowed at the table. The rules of the invitation stated that "organizations are committed to an extension of the FAPP Ryan White Programs." And neither Housing Works, nor I personally, agree that the current Ryan White Care Act should be allowed to stand until 2012. While I understand concerns the community has, there is no excuse for an outdated, deeply flawed, albeit necessary piece of legislation to remain law for three more years. We can't afford another three years in wait-and-see mode. I believe we should re-write Ryan White in 2009. I appreciate the fact that maintaining a continuity of care is crucial, and that must be addressed in any legislation. And of course, there can always be more information to make an informed recommendation, but I believe we must plow ahead and do that work given the current environment. In December, the Campaign to End AIDS, NAPWA and CAEAR will be presenting a report about the perspectives of consumers throughout the country, a missing component in the last reauthorization. This collaboration had many starts and stops, differing opinions, and had to address control issues, but we plugged away, stayed engaged and continue to work to develop this collaborative report. The 2005 reauthorization didn't address the changing epidemic -- the fact that AIDS now has a chronic component and that people are living longer, nor the racial, economic or geographic shifting of the disease. As Ted Kennedy staffer Connie Garner noted at the FAPP meeting, AIDS advocates have not been collaborating with other disability advocates enough. It's time we push this conversation in a different direction. These are difficult conversations, but these are conversations that have to be had. And as such, it's important that FAPP and those planning the next Ryan White legislation make it an inclusive process. While I don't want the AIDS community tearing itself apart, we need to make sure that differences of opinion are aired out in the open, and that voices of minority opinions are respected. Some say we only have 13 months. But I say we still have 13 months. Let's keep the conversation going. Send comments to Campbell at campbell@housingworks.org
Comment by: The C Man
(Down South)
Fri., Oct. 10, 2008 at 10:09 pm EDT In many cases, Ryan White has become the poz people's welfare system. I know many people who needed it at one point, but then "forgot" to update their employment status after getting a new job just so they'd have cheaper meds. I too have been tempted because even with insurance, I'm paying an arm and a leg for care...and bad care at that. Don't complain about people dying with AIDS when capable HIVers are stealing the money AIDS patients need for live-save medications. Besides, why do HIVers get a special welfare system that cancer patients don't?
Comment by: Ecqbert
(Daytona Beach, FL)
Thu., Oct. 9, 2008 at 2:47 pm EDT What needs to change are all the layers of bureaucracy involved in getting access to Ryan White services. In my area, $180,000 of the $1.2 million budgeted for Ryan White Title II funds are immediately siphoned off by the auditing/fiscal/vendor contractor agency for administration costs. That's 15% for "administrative costs"--way too much in my opinion. The Florida Dept of Health has a huge cadre of auditors that could take up this piece of the pie and make more of these funds available for services. Our fiscal agency wants to eliminate ASO case management altogether. I would dead today if it wasn't for my case manager. Cut out all of these middlemen that are earning a living off of Ryan White. Save Ryan White funds for those who need the help most!
Comment by: HARPIE
(Pittsburgh PA)
Thu., Oct. 9, 2008 at 11:36 am EDT AIDS advocates in my opinion are not taken as seriously as they used to be in 2001 and before that time. I was in the Hudson River arera near Poughkeepsie NY...I am now in pittsburgh and there is a great difference in how consumers have an input to Ryan White services.
Add Your Comment:
(Please note: Your name and comment will be public, and may even show up in
Google search results. Be careful when providing personal information!) This article was provided by Housing Works. It is a part of the publication Housing Works AIDS Issues Update. |