Miami Herald - Tuesday, December 15, 1992
John Donnelly, Herald Staff Writer

The reason: death.

Hemophiliac Ricky Ray's bravery when a small Florida town turned against his family encouraged many HIV-infected hemophiliacs to come forward. But his death Sunday from AIDS at age 15 will inspire even more to speak up, activists said Monday.

The number of infected hemophiliacs, long quiet, is astounding: Before 1985, an estimated 90 percent of all severe hemophiliacs in the United States became infected with HIV. Severely afflicted hemophiliacs require a transfusion a week.

"There are a lot of angry, bitter people out there," said Calvin Dawson of Apopka, Fla., whose hemophiliac brother Marvin Dawson of Fort Lauderdale died of AIDS last year. "They feel that it didn't need to happen to Ricky Ray, and it doesn't have to happen to them."

Last month, hemophiliacs took their first major stand. At a National Hemophilia Foundation meeting in Atlanta, many pushed for a congressional investigation into whether the federal government and pharmaceutical companies that make blood products knew before 1985 that supplies were tainted with the deadly virus.

But first the organization decided to wait 90 days for a meeting among representatives of the pharmaceutical companies, insurance firms and families with infected hemophiliacs. If that doesn't work, they'll go to Congress.

The pharmaceutical companies say they did nothing wrong. The hemophilia foundation says its knows of no successful court verdict against the companies. Many families, though, such as the Rays, settled out of court with the makers of the blood products. The Rays received $1 million.

About 20,000 U.S. citizens have hemophilia, a genetic blood clotting disorder. More than half that number became infected before proper blood screening. Hemophiliacs use blood clotting agents to slow bleeding.

Their blood doesn't clot because of an absence of factor VIII or IX. That factor is culled from a wide pool of donated blood.

If a severe hemophiliac takes about a dose a week of factored blood, he or she is subjected to a pool of about 100,000 donors in a year.

Hence, the incredibly high infection rate before safe blood screening began.

Hemophiliacs, though, have been largely quiet over the years about even their inherited disease. Many have viewed it as a stigma. When they contract HIV, many became reclusive. Activists say some were so ashamed that they refused to take any treatment for HIV. No more.

"While Ricky Ray's battle might have ended, there are thousands of hemophiliacs lined up behind him," said Maxine Segal of South Miami, who lost two hemophiliac sons to AIDS. "Those already dead from hemophilia-AIDS are now ready to greet (Ricky). We've got to stand up and be counted."

Peter Bayer, 39, a former University of Miami law instructor who now does patient advocacy work in Tampa, is one who already has. Bayer contracted HIV through tainted blood products in 1985 or 1986. He has remained healthy.

"It was never a secret how many hemophiliacs were infected with HIV," he said Monday. "What is happening now is that the infection is claiming more and more lives. And as the 10,000 people become more sick, more will die, and an understandable call has come up. We want to know what can be done."

Bayer said HIV-infected hemophiliacs have one major question: "What happened?"

Who knew what, when? Were the companies told about possibilities of tainted supplies before they warned hemophiliacs? What about the federal government?

"We are definitely willing to listen to the issues," Bob Pearson, spokesman for Pennsylvania-based Armour Pharmaceutical, one of the largest makers of blood products.

Pearson said he had not heard about a meeting with families of HIV-infected hemophiliacs, but "that sounds interesting. I need to know exactly what they want to talk about."

Blood factor makers have strongly denied wrongdoing.

During the Ray lawsuit last year, which ended in a mistrial, Duncan Barr, an attorney for Cutter Laboratories, said: "We don't feel we did anything wrong, and we shouldn't have to pay these people anything."

Ricky Ray is one of about 1,600 AIDS-infected hemophiliacs who have died. His brother Robert, 14, is one of about 750 with full-blown AIDs. His brother Randy, 13, is one of more than 10,000 with HIV.

The family's pain is well-documented. The Arcadia School Board barred them from school in 1986. Someone torched their home, killed their dog and forced them to flee the small town in Central Florida.

Ricky Ray will be buried Friday in Sarasota. Many HIV-infected hemophiliacs are expected to be there.

Dawson, head of Florida's chapter for the hemophilia foundation, said Ricky told him last month that he didn't want to die in vain.

"He relayed to me he had wanted his life, and even his death, to be used to make a lot of noise," Dawson said. "He wanted to bring hemophiliacs with HIV to the forefront."

HEMOPHILIA AND HIV

Hemophiliacs were infected with HIV in droves before 1985 because their blood products were culled from pools of donors. Hemophiliacs lack factor VIII or IX in their blood. A severely afflicted hemophiliac draws from a combined 100,000 blood donors a year.

CAPTION: PHOTO Ryan White (AIDS), Ricky RAY with his brothers Robert and Randy
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