URGENT! Action needed on Ryan White Care Act TODAY
by annatopia, Wed May 24, 2006 at 10:54:25 AM EDT
Hey everyone - yea yea, I know you haven't heard much from me lately. I've been busy door knocking and talking to voters and trying to take back my district. That being said, I'm posting this diary today because an urgent life and death situation has developed in the last 24 hours, and I need your help.
How many people here are aware of the fact that the Ryan White Care Act is up for reauthorisation this week?
People over 28 or so may remember Ryan White as the child at the center of a media firestorm after he contracted HIV from a blood transfusion in the 80s. Ryan's school district would not admit him, because this was still back in the days when people thought you could get HIV from sharing a water fountain. After a protracted legal battle, Ryan won the right to go to school, but because the HIV drug regimen wasn't as developed as it is today, he passed away in 1990 at age 19. The Ryan White Care Act provides funding to organisations across the country who assist people living with HIV/AIDS. It was authorised in 1990 after Ryan's death.
I have a good friend here in Arlington who works at one of the local foundations that receives funding from the RWCA. They were notified just four days ago that the funding was going to be slashed. And naturally, the bill to cut funding is being pushed through the House Energy and Commerce Committee, headed by none other than my representative, internet freedom killer Joe Barton. Today is the ONLY DAY that the committee is taking public comments on the reauthorisation. Also, a rumor exists that there is a rule change being attached that will not allow any further change on this bill once it's through to prevent public outcry from making a difference.
Here are a few facts that were sent to me by my activist friend:
The Ryan White Care Act funds life saving medications and supportive services for women, children and men living with HIV/AIDS.
The Act is currently being reauthorized by Congress.
The reauthorization has been handled in closed door sessions. National HIV/AIDS organizations have had less than 5 days to review and comment on this.
Under the proposed reauthorization, Texas will lose $9.5 million dollars in funding for medications and 4.5 million for supportive services.
Tarrant County will lose between $800K and 1 million dollars
The bill is in the Energy and Commerce committee, chaired by none other than Joe Barton, the second highest ranking member is Ralph Hall (R-TX)
Naturally my interest in this comes from the fact that my county will lose a million dollars, but this translates into a national issue. This is literally a life and death situation for thousands of people across the nation. If the RWCA is not fully funded, people will die. I am not being alarmist when I say that; it's simply true. The main constituencies served by RWCA are lower income people. Without funding, many of them will not be able to obtain life-saving medications. Again, people will die.
Today is the ONLY day that the general public is allowed to offer comments on the reauthorisation. It is going to take a massive public outcry in order to get full funding and save lives. And since all this has been purposefully manipulated behind closed doors, this isn't even on most peoples' radar.
Please, I implore you to take a moment today and call the committee members and demand that they fully fund the Ryan White Care Act. Here is a full list of the committee members, and each name links to their contact information. If you have a congresscritter on that commitee, please contact them. The committee's office phone number is (202) 225-3641. You can call and leave a comment there as well.
Forgive me for the tone of desperation in this post, but today I truly am desperate. I have many friends who are going to be directly effected if this act isn't fully funded. Maybe some of you have friends of family members who depend on this act in order to receive the medications that are extending their lives. If so, then you must make a call. Lives depend on you taking action today.
(this entry is being x-posted all over the damn place, so if you see it elsewhere please recommend it - we only have a few hours to act)
one more thing: For those who don't remember Ryan, he touched the entire country. This is a copy of the testimony he gave to the Presidential Commission on AIDS. Ryan was a tireless advocate, and we must honor his legacy by fully funding the RWCA. This might shock some of you who are younger and have always been aware that you can't catch HIV from sharing a water fountain. But back in the day, when HIV was still predominantly known as "the gay disease", life was very different. I'd like to think we've come a long way since then, but the fact that the RWCA is about to be slashed just shows me how far we still have to go.
"Thank You, Commissioners:
My name is Ryan White. I am sixteen years old. I have hemophilia, and I have AIDS.
When I was three days old, the doctors told my parents I was a severe hemophiliac, meaning my blood does not clot. Lucky for me, there was a product just approved by the Food and Drug Administration. It was called Factor VIII, which contains the clotting agent found in blood.
While I was growing up, I had many bleeds or hemorhages in my joints which make it very painful. Twice a week I would receive injections or IV's of Factor VIII which clotted the blood and then broke it down. A bleed occurs from a broken blood vessel or vein. The blood then had nowhere to go so it would swell up in a joint. You could compare it to trying to pour a quart of milk into a pint-sized container of milk.
The first five to six years of my life were spent in and out of the hospital. All in all I led a pretty normal life. Most recently my battle has been against AIDS and the discrimination surrounding it. On December 17, 1984, I had surgery to remove two inches of my left lung due to pneumonia. After two hours of surgery the doctors told my mother I had AIDS. I contracted AIDS through my Factor VIII which is made from blood. When I came out of surgery, I was on a respirator and had a tube in my left lung. I spent Christmas and the next thirty days in the hospital. A lot of my time was spent searching, thinking and planning my life.
I came face to face with death at thirteen years old. I was diagnosed with AIDS: a killer. Doctors told me I'm not contagious. Given six months to live and being the fighter that I am, I set high goals for myself. It was my decision to live a normal life, go to school, be with my friends, and enjoying day to day activities. It was not going to be easy.
The school I was going to said they had no guidelines for a person with AIDS. The school board, my teachers, and my principal voted to keep me out of the classroom even after the guidelines were set by the I.S.B.H., for fear of someone getting AIDS from me by casual contact. Rumors of sneezing, kissing, tears, sweat, and saliva spreading AIDS caused people to panic.
We began a series of court battles for nine months, while I was attending classes by telephone. Eventually, I won the right to attend school, but the prejudice was still there. Listening to medical facts was not enough. People wanted one hundred percent guarantees. There are no one hundred percent guarantees in life, but concessions were made by Mom and me to help ease the fear. We decided to meet them halfway:
* Separate restrooms
* No gym
* Separate drinking fountains
* Disposable eating utensils and trays
Even though we knew AIDS was not spread through casual contact. Nevertheless, parents of twenty students started their own school. They were still not convinced. Because of the lack of education on AIDS, discrimination, fear, panic, and lies surrounded me:
* I became the target of Ryan White jokes
* Lies about me biting people
* Spitting on vegetables and cookies
* Urinating on bathroom walls
* Some restaurants threw away my dishes
* My school locker was vandalized inside and folders were marked FAG and other obscenities
I was labeled a troublemaker, my mom an unfit mother, and I was not welcome anywhere. People would get up and leave so they would not have to sit anywhere near me. Even at church, people would not shake my hand.
This brought on the news media, TV crews, interviews, and numerous public appearances. I became known as the AIDS boy. I received thousands of letters of support from all around the world, all because I wanted to go to school. Mayor Koch, of New York, was the first public figure to give me support. Entertainers, athletes, and stars started giving me support. I met some of the greatest like Elton John, Greg Louganis, Max Headroom, Alyssa Milano (my teen idol), Lyndon King (Los Angeles Raiders), and Charlie Sheen. All of these plus many more became my friends, but I had very few friends at school. How could these people in the public eye not be afraid of me, but my whole town was?
It was difficult, at times, to handle; but I tried to ignore the injustice, because I knew the people were wrong. My family and I held no hatred for those people because we realized they were victims of their own ignorance. We had great faith that with patience, understanding, and education, that my family and I could be helpful in changing their minds and attitudes around. Financial hardships were rough on us, even though Mom had a good job at G.M. The more I was sick, the more work she had to miss. Bills became impossible to pay. My sister, Andrea, was a championship roller skater who had to sacrifice too. There was no money for her lessons and travel. AIDS can destroy a family if you let it, but luckily for my sister and me, Mom taught us to keep going. Don't give up, be proud of who you are, and never feel sorry for yourself.
After two and a half years of declining health, two attacks of pneumocystis, shingles, a rare form of whooping cough, and liver problems, I faced fighting chills, fevers, coughing, tiredness, and vomiting. I was very ill and being tutored at home. The desire to move into a bigger house, to avoid living AIDS daily, and a dream to be accepted by a community and school, became possible and a reality with a movie about my life, The Ryan White Story.
My life is better now. At the end of the school year (1986-87), my family and I decided to move to Cicero, Indiana. We did a lot of hoping and praying that the community would welcome us, and they did. For the first time in three years, we feel we have a home, a supportive school, and lots of friends. The communities of Cicero, Atlanta, Arcadia, and Noblesville, Indiana, are now what we call "home." I'm feeling great. I am a normal happy teenager again. I have a learner's permit. I attend sports functions and dances. My studies are important to me. I made the honor role just recently, with 2 A's and 2 B's. I'm just one of the kids, and all because the students at Hamilton Heights High School listened to the facts, educated their parents and themselves, and believed in me.
I believe in myself as I look forward to graduating from Hamilton Heights High School in 1991.
Hamilton Heights High School is proof that AIDS EDUCATION in schools works."