URGENT! Action needed on Ryan White Care Act TODAY

bumped - Matt

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."

Tags: House Energy and Commerce Committee, HR 5438, Joe Barton, PL 101-381, Ryan White Care Act, S 2240 (101st), S 2339 (all tags)

Comments

12 Comments

please....

make the calls!  this is life and death for many people.

by annatopia 2006-05-24 08:11AM | 0 recs
Re: URGENT! Action needed on Ryan White Care Act T

great work Anna

by Our Gal in Brooklyn 2006-05-24 09:22AM | 0 recs
thank you thank you thank you!

for hitting that button.

you can also recommend this at MLW and dkos:

http://www.myleftwing.com/showDiary.do?d iaryId=8824#113717

http://www.dailykos.com/story/2006/5/24/ 121513/464

by annatopia 2006-05-24 10:02AM | 0 recs
Not to be curmudgeonly (again), but...

You're right - I had no idea about any of this.

But - I gather that the RWCA (PL 101-381, S 2240) expired in September 05. And there was always going to be a renewal bill some time in the 109th.

And that there is the Coburn bill (S 2339) as well as the House bill - which I'm assuming is HR 5438, though the text isn't on THOMAS yet.

(Useful CRS reports here and here - both PDF.)

The Commerce Committee page for the Wednesday markup says that HR 5438 was reported out on a voice vote.

So, if that's the bill you're talking about, things don't sound too promising.

I wonder, though, not to put too fine a point on it, whether it might not have been better have to got lobbying operations together rather earlier in the piece.

There are - and this is a general point - too many desperate 11th hour cries for lobbying support on bills that have been on the stocks for ages. (The actual RWCA renewal bill has just appeared; but the fact that there was going to have to be a renewal was obviously known all along.)

What there is a desperate need for is some systematizing (and where better than online?) of lobbying on bills (like RWCA renewal) likely to be of interest to wide swathes of the lefty sphere.

It wouldn't cost much (compared to buying a newspaper, say) and would fill an aching void.

(Though I appreciate that that doesn't help your current cause much...)

by skeptic06 2006-05-24 10:05AM | 0 recs
Oh - and please use bill numbers!

Tracking down a bill without a bill number is needle-in-haystack stuff. Unnecessary, too.

Plus - tracking down a MyDD pieceabout a bill which isn't tagged with the bill number is usually also destined to be fruitless.

Just saying...

by skeptic06 2006-05-24 10:11AM | 0 recs
Re: Oh - and please use bill numbers!

thanks for adding those to the tags - much appreciated!

by annatopia 2006-05-24 10:28AM | 0 recs
but that's the thing....

the committee purposefully did this behind closed doors.  they kept this from the public eye.  hell, they only told national HIV/AIDS groups about this four or five days ago!  i just heard about this last night and spent the evening making phone calls and sending emails to my activist friends who are intimately involved in this situation.

and yea, i know we get sick and tired of last minute action items, but when you get blindsided by something like this, are we just supposed to sit there and do nothing?  it does not look good right now, indeed.  but my feeling is that if we raise enough hell, maybe we can make a difference.

what i am really worried about is the rule change rumor.  if that comes to pass, RWCA will possibly be changed forever (at least until we get a dem heading up the HE&C committee).  organisations all over the country will permanently lose their funding.  this is just another notch in grover norquist's belt.  let's just drown all the HIV/AIDs patients in a bathtub.

please don't just give up.  peoples' lives depend on this funding.

by annatopia 2006-05-24 10:13AM | 0 recs
Re: but that's the thing....

My comments (which, on re-reading were even more cumudgeonly than I'd suspected!) weren't directed at the substance of the bill at all.

(It looks like a rerun of the Medicaid provisions of S 1932: cuts which are negligible in relation to the deficit but, for the amounts involved, cause the maximum amount of pain to the maximum number of people.)

The problem I was focusing on was the general one of collating information about the progress of bills of interest to lefties, and setting off an alarm in good time so that lobbying can be planned.

There have been dozens of these bills in the 109th that have managed to move stealthily until at the last moment (when they come to the Senate floor, say) folks wake up to them.

I find it hard to believe that a site couldn't be developed - tapping into THOMAS, activist sites, news sites and whatever - which could track movements and ring bells when appropriate.

On the specific issue of fighting for the renewal of RWCA on decent terms, you'll be hampered by the fact that the status quo (got by a conference stymie, say) is no good: you need a bill to pass: but it has to be the right bill.

(How the renewal provisions are packaged also counts: I get the sense that they'll be wrapped up with a whole lot of other stuff, and thus be trickier to deal with. Supporters of other parts of the bill will have other priorities!)

I have no idea how effective the HIV lobby is in either house. I'm guessing that if (and I still don't know) HR 5438 is the renewal bill and was passed on a voice vote, it can't have been too successful in this case so far.  

Who are Dem senators and reps with the strongest interest in HIV issues? Nothing will get done in Congress without some leadership and organization inside the Capitol - it's an election year, but that cuts both ways. (MCs have voters to persuade and contributions to raise. Taking up an HIV bill might help or hinder the process, depending.)

by skeptic06 2006-05-24 11:29AM | 0 recs
oh i hear ya

no worries, i didn't take your comments the wrong way.

you know, i can't remember the URL off the top of my head, but there is a site where you can signup to monitor bills that make their way through committee.

i'd dig for it now but i am pretty sure i have it bookmarked at home, and i'm fixing to leave work anyway.  i'm going to meet w/a few locals and see WTF they are going to do if/when their funding is slashed.

thanks again for your comments, sincerely.  this was sprung on me less than 24 hours ago, and it was sprung on the national activists 72 hours before that.  it's just ridiculous that barton felt he had to hide what he was doing from the public.

by annatopia 2006-05-24 11:38AM | 0 recs
Commerce hearing on RWCA renewal

There was a hearing on April 27 on the subject before the Subcommittee on Health.

The page linked clicks through to PDFs of three opening statements - including one (more like a report!) from the GAO Health Care Director.

by skeptic06 2006-05-24 03:43PM | 0 recs
update

matt, for some reason i couldn't update this entry after you FPed it.  just FYI.  anyway...


one last update:  first, i'd like to quickly extend a hearty thanks to matt for FPing this post.  i can't tell you how much it means to me to see that this community cares about this issue.  i'm going to paste in a few paragraphs from the last update i made over on dkos:


this is personal to me. i lost a very good friend a few years ago to pneumonia that he contracted after he developed full blown AIDS. but before he got sick, an organisation in dallas that receives this funding helped to keep him alive. he was able to get several more fulfilling years out of his life before he finally passed away in 1998. when i heard about this, my blood just boiled over. so again, THANK YOU for helping us out today.


i'm glad that i could alert yall to this issue, but credit must go to michelle harris, wife of candidate david harris. michelle called me late yesterday afternoon and asked if there was any way we could generate some heat on this today. i told her i'd do what i could.


her husband is running against barton. the reasons to support dave keep stacking up, and i hope yall take it to heart. getting rid of barton would change so much - his committee controls so many bills that directly effect our lives. this is but one example of the many injustices that have occurred on barton's watch. of course yall know barton as the internet freedom killer as well. i just wish that somehow dave's candidacy would catch fire in the blogosphere. i have tried to explain to the community the importance of unseating barton, but i can't do it alone. i hope that the race to unseat barton will now be on everyone's radar. we could replace a heartless bastard with a true liberal who cares about humanity and will put people before corporations. trust me, if dave headed this committee, there is no way in hell that the RWCA would be gutted.

i added that last bit because I KNOW the evils of joe barton.  it's not just the net neutrality bill, it's not just him voting against the katrina funding, it's not just him trying to gut RWCA... it's so much more.  the HE&CC controls bills that directly effect our lives.  there are several subcommittees: health, energy, environment, telecom, commerce, and investigations.  a man who is bought and sold by the telcos and big oil heads the committee that oversees those industries!  it's a travesty, and we desperately need new leadership.  


everything barton touches produces a new outrage and raises my blood pressure.  i'm praying (and i'm an atheist!) that the democrats retake the house this fall so that the HE&CC gets new leadership.  you can help by supporting putting this race on your radar.


now back to the topic.  next week i am going to follow up with an action plan for the community.  we're assuming this bill will pass through committee, and we are going to need serious heat if we are going to sustain funding for the RWCA.  i hope you'll keep your eyes peeled.  i'll certainly keep you updated.

by annatopia 2006-05-24 02:53PM | 0 recs
press release from engel

i told you i wasn't kidding when i said people would die:

ENGEL: NEW YORK STANDS TO LOSE MILLIONS

Ryan White CARE Act Reauthorization will slash New York funding by $16 to $24 million

Washington, D.C.- Congressman Eliot Engel (D-NY) has urged the House Energy and Commerce Committee to correct its Ryan White CARE Act funding so New York avoids a $16 to $24 million dollar yearly funding cut, with more funding losses in subsequent years. "There are few pieces of legislation this year that are as profoundly important to New York as the Ryan White CARE Act.  My New York colleagues and I are deeply troubled by the new provisions which will decimate New York's systems of care by slashing funding by $16 to $24 million dollars in the first year alone with even more catastrophic drops the following years," said Engel.

New York is home to 17% of the nation's AIDS population.  New York has more HIV/AIDS cases than any other state in the nation and spends more of its state dollars on care for HIV/AIDS patients than any state in the nation.  The funding discrepancy stems from a directive in 2000 to develop an HIV surveillance system which New York complied with immediately. Engel continued, "New York is being penalized for our cooperation and quick action. States that did not follow the directive don't have HIV numbers to report, and are being assigned an artificially high funding allocation for their HIV cases. This proxy is giving these states a windfall in Ryan White funding, taking it away from states that need it. This dilutes the fixed pot of money and results in huge losses for states like New York, Texas and Florida."

Without accurate HIV data from all states, these "proxy-windfall" will undermine the central goal to ensure that the scarce dollars follow the case counts.  "Make no mistake-under the current funding formula, our system of care will be compromised beyond repair and people will in fact die," said Engel.

"New York isn't looking to gain anything. We just need to make sure that we can keep helping the nearly 110,000 people living in our state with HIV/AIDS.  We need to make sure we can keep providing life saving drugs and healthcare services which are preventing the transmission of HIV, preventing the progression from HIV to AIDS and ultimately keeping people from dying," concluded Engel.

by annatopia 2006-05-24 02:56PM | 0 recs

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