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Money for Hemophiliacs Tied Up in Congress

It has been almost 20 years since half of the nation's population of hemophiliacs--half of about 20,000 people--were infected by a bad batch of blood products tainted with HIV. Hemophiliacs, who regularly need blood transfusions, were outraged at the federal government and blood product manufacturers for not screening the blood.


Advocates lobbied Washington for relief, and Congress appeared to respond in 1998. The Ricky Ray Relief Act allocated $750 million ($100,000 each) for all those infected by the bad blood products. The bill was named after a Florida boy who contracted AIDS, along with his brother, after receiving tainted blood for hemophilia. Ricky Ray and his younger brother, Robert, were kicked out of their school and their home was torched after news spread that they were HIV-positive. Eventually, the Rays managed to get the boys back in school after a court battle. Ricky, however, died in 1992, just short of his 16th birthday.


Shortly after Ricky's death, then President-elect Bill Clinton said he was going to make restitution a priority. Congress passed the Ricky Ray Relief Act in 1998. Two years later, however, many in the hemophiliac community found themselves forced to fight again. Most of the allocated money has been tied up in federal budget battles, and only a few hundred people have been paid. Of the hemophiliacs originally infected with HIV in 1982, there are now only about 4,000 still alive. Advocates say one person dies every day.


Val Bias got HIV from a blood transfusion for his hemophilia in 1982. He infected his wife, Katie, before his HIV was diagnosed, and she died from AIDS 10 years later. He quit his job and went to Washington to lobby for the Ricky Ray bill. Now, he is outraged all over again.


"So many of us felt victimized by the system, and that's the way we feel today by the process going on in Congress," he says.


Ellis Sulser received tainted blood more than 15 years ago. Since then, he has spent more than $6 million in insurance money on his illness, and money is running out.


"They help people that are victims of floods, they help people that are victims of earthquakes and other natural disasters," Sulser says. "This is a disaster that was enacted by the government. We are still here waiting for help, and we haven't been given any."


Sulser's insurance now costs him $1,000 a month. He worries that he will not live long enough to receive the money due to him. "Every time you hear of somebody else going into the hospital, you start to think about your own possibility of doing the same thing and [what will happen to] your own family," he says.


Just recently, President Clinton said he would fund the Ricky Ray Relief Fund with excess money from Medicare. But Congressman Porter Goss of Florida, co-author of the bill, says Congress will surely veto this appropriation of Medicare funds. Goss, a Republican, says the President should have been pushing all along for a separate llotment of money. But he also blames political wrangling for the deadlock.


"There is no such thing as taking something on its merits anymore," he says. "It is all partisan." He also says he is "tired of everyone playing the blame games and charades." Goss plans to retire from the House after his next term.


Meanwhile, Robert Ray is now in the same intensive care unit in Florida where his brother, Ricky, died. The 22-year-old suffers from full-blown AIDS, and doctors say he is not expected to make it out of the hospital.

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