On August 25th, I posted an entry on Bilerico, Members of Congress, 6 weeks left to Save Ryan White!, since that time 12-Members of Congress from Florida led the way in a bipartisan way to answer Congressman Hank Johnson's call to co-sign a "Dear Colleague" calling on Chairman Waxman and Ranking Member Barton to pass swiftly a three-year extension of the Ryan White HIV/AIDS Treatment Modernization Act. In Congressman Johnson's letter, he explains to colleagues that:
"The current law expires on September 30th, 2009, and, without an extension, countless low-income Americans living with HIV/AIDS will lose critical benefits."
In the short time the letter was circulated to Members of Congress, 12 Members in Florida eagerly signed their name to assure the approximate 150,000 Floridians living with HIV/AIDS of their leadership. Each office personally assured me of their Member's support. Congressman Allen Boyd, Jr. (D-Northern Florida) e-mailed me personally to said:
"Michael, Thanks for bringing this to my attention. I will check with my DC folks to make sure we get this done. Allen"
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Below is a complete listing of all the Members of Congress from Florida who have stepped forward to our voice in Washington, DC on Ryan White, please send each of them an e-mail thanking them for their leadership:
- Allen Boyd (D - 2nd District)
- Corrine Brown (D - 3rd District)
- Kathy Castor (D - 11th District)
- Lincoln Diaz-Balart (R - 21st District)
- Mario Diaz-Balart (R - 25th District)
- Alan Grayson (D - 8th District)
- Alcee Hastings (D - 23rd District)
- Ron Klein (D - 22nd District)
- Kendrick Meek (D - 17th District)
- Ileana Ros-Lehtinen (R - 18th District)
- Debbie Wasserman Schultz (D - 20th District)
- Robert Wexler (D - 19th District)
This morning, the Subcommittee on Health for the House Committee on Energy and Commerce will hold the first hearing on what should be included in the draft legislation for a new Ryan White. Florida can be proud knowing Congresswoman Kathy Castor (D-Tampa) is among the voices of leadership on the subcommittee and yesterday her office ask me to call on Floridians Living with HIV/AIDS who are dependent on Ryan White funded programs to share their stories to be included in the Congresswoman's remarks. Clearly, Congresswoman Castor wants to be a champion and voice for those of us who are the experts on what it is like to live with HIV/AIDS, as defined in the Denver Principles, in receiving care, treatment and support services through Ryan White.
Last night I compiled several of the stories provided by Floridians living with HIV/AIDS and transmitted them the Congresswoman's staffers who are working hard to support their boss in a time when our community is starving for leadership. Below is a small example of the collection of stories of hope Congresswoman Castor will be including as part of her statement at today's hearing:
...the Ryan White Act is the only true safety net for people living with HIV/AIDS to meet unfunded healthcare.
... The Ryan White program has been blessing to me and has given me a second chance to live a proactive lifestyle. If the program ceased to exist, I wouldn't know what to do. Even worse, the insurance my employer provides would cover absolutely nothing. I would be left with the complicated decision of choosing between keeping a "roof over my head" or life saving medical treatment. Unfortunately, I would have to choose the latter and have my life shortened significantly. Please reinstate The Ryan White Program, not only does my life depend on it but so do countless others.
...I was diagnosed with HIV back in the summer of 2000 and I was fresh out of college with no health insurance. It was only through government assisted programs that were funded largely by the Ryan White Foundation that I was able to have checkups and blood-work done. I was a patient at Pinellas Care Clinic in St. Pete, FL and also at Care Resource in Miami, FL. I have since begun working and have had insurance for four years, but couldn't have gotten through those five years without the assistance of the Ryan White Foundation funds.
...But in December, 2008 all that changed when I became ill, had to leave my part-time job. With co-payment on medications and medical visits I was at a point of choosing to eat or stop taking medical services. After contacting a Ryan White case management agency...I was helped out with financial assistance though Ryan White...there are many like myself here in the United States who need just a little help to continue to be productive members of society. I can honestly say if Ryan White had not been in place, I believe I would be dead.
... I have struggled to keep on my drug therapy even during the last eight years which was extremely difficult because of the bureaucracy of Florida. I had to give up my private coverage after the cobra ran out from my previous employer. I became disabled in 1994. After COBRA, I depended on the Florida Medicaid Medically Needy Share of cost system which was dissolved by Gov. Bush in 2001. So in 2006 when Medicare Part D became policy, I went without my meds because the insurance drug company demanded 5,000 dollars for my first month of meds. The donut hole ran me into the ground. I have sold most of my possessions and grow my own food. I had to file bankruptcy last year, and I struggle each month to navigate between Florida's ADAP and Medicare's Part D prescription program. It is terribly difficult but I'm used to it. I am concerned about people with less education and experience trying to survive. I understand why people become disenfranchised and die. AIDS stigma is rampant in North Florida.
... I am a woman living with HIV. I am heterosexual. I have been living with it for 11 years. Or should I say it has been living with me. I depend on Ryan White Support for a lot of things. I work a full time job but HIV medicine cost so much there would be NO WAY for me to live if I had to pay for the medicine. Just it alone is more than I make in a month. People depend on Ryan White for medical. I have Insurance, but I go to a Ryan White Doctor for care. I could not afford a regular visit even with insurance. Ryan White helps in so many different areas for the health and well being of people living with HIV and Aids. We need Ryan White!!!!!!
... I had a substance abuse problem and that's how I believe I contracted this virus. In 1992 I decided to do something about this and seek help. I found a doctor who treated people with HIV/AIDS. I also went to seek help for my substance abuse addiction and started participating in a HIV/AIDS-substance abuse support groups. There I came to share my story with others. I use the services of programs funded by Ryan White such as: case management, food bank and dental. In the past I used legal services and before the cuts, support groups. I am a long term survivor. I have seen a lot. People say that I might be able to find those services somewhere else. I have found and use those services, BUT it is not the same. Ryan White is directed to the HIV/AIDS community. When I walked into programs funded by Ryan White, I like to see my case manager, get my food, etc... I don't feel rejected. I feel understood and accepted. My confidentiality is respected. I ask myself what will happen if the Ryan White Act disappears. Those programs that are not funded by Ryan White and therefore are not directed exclusively to the HIV/AIDS community still have lack of knowledge and the stigma is still there. Recently I was applying for services in a program not funded by Ryan White. I was a first time visitor and the staff member was taking information about me. When it came to the part of asking me my HIV status, the person assume I was HIV-Negative and was going to check the box for negative. I told the person that I was Positive. I notice the surprise, the hesitation and the look away. I felt like I was back in 1987 again, when I felt that people where looking at me like I was a threat to them. I feel that taking away funding/services of Ryan White would make me hesitate about getting services somewhere else because of what I have experience more than once and this is me, a long term survivor. Imagine the recently diagnose. Like a grain of sand, I hope my story can touch the hearts of those that still have not made their decision to support the continuation of the Ryan White Act.
Accompanied with the many stories provided by people throughout the state, I forward a copy of a report HIV Positive Voices in America, a project of CAEAR Coalition's PLWHA Caucus which I am a proud member. The report contained comments from people living with HIV/AIDS throughout the United States and included a significant number of responses from people living with HIV/AIDS who attended the Positive Living Conference in Panhandle organized by AIDS Oasis and a NAPWA Regional Meeting in Miami.
HIV Positive Voices in America was an initiative developed and organized by people living with HIV/AIDS (PLWHA) from the Communities Advocating Emergency AIDS Relief (CAEAR) Coalition People Living with HIV/AIDS (PLWHA) Caucus and the National Association of People with AIDS (NAPWA). The goal of the project was to hear from our fellow PLWHAs throughout the United States about the needs of our community - the disparate needs based on identity, geography, socioeconomic status, familial situation, and the extent of our disability. To be effective advocates for our over one million brothers and sisters living with HIV/AIDS in the United States, we wanted to learn more about what our community needs are; what sustains our lives and optimizes individual and community opportunities for a better quality of life, all while building on our hope for the future. The information gleamed from this comprehensive study should provide a valuable tool for decision-makers in Washington D.C. as they reexamine
Ryan White, engage in a discussion on healthcare reform, and the Obama Administration develops a comprehensive, coordinated, and results-driven National AIDS Strategy.
This initiative was conceived following a strong request from Senator Kennedy's staff shortly after the 2006 Ryan White reauthorization process to hear from "real people"- the grassroots and people living with HIV who are not normally involved in advocacy and policy making. The organizers of this initiative were clear from the outset that this project must be a grassroots driven process that empowers and listens to people living with HIV/AIDS through a community organizing model.
Stay tuned for more on the reauthorization of the Ryan White Act and the unleashed power of independent and empowered voices of people living with HIV/AIDS making room at the table for their voice.