Hemophiliacs demand help with AIDS costs 10,000 in U.S. are HIV-positive from tainted blood

November 19, 1992|By Knight-Ridder Newspapers

Maxine Segal recalls first feeling betrayed, then angry, as sh listened to the doctors from the National Hemophilia Foundation testifying against her youngest son, Doug, a 35-year-old hemophiliac and father of three, who was dying of AIDS.

Only the day before, Ms. Segal buried her other son, Scott, at age 36. He, too, was a hemophiliac, and like his younger brother, had contracted AIDS from using tainted blood-clotting medicine. After much debate, the brothers had decided to sue the medicine's manufacturer.

"I helped to start the National Hemophilia Foundation. I organized one of the first three chapters in Miami. I expected they would help us," Ms. Segal recalls. Instead, two former NHF doctors testified that the manufacturers had not been negligent. "I felt betrayed," says Ms. Segal.

Doug Segal lost his case, in part because of the doctors' testimony.

He died six months later.

"I will never, ever forgive them," says Ms. Segal. "I have dedicated the rest of my life to seeing that those doctors are held accountable, and to seeing that my sons' stories get told."

Today, Ms. Segal gets her chance. The 44th annual meeting of the National Hemophilia Foundation opens in Atlanta, and Ms. Segal and others like her are ready for battle.

Unlike previous conventions, which focused on social events and research efforts, this four-day event promises to be an explosive, soul-searching affair, marked by bitter recriminations, demonstrations and even picket lines.

The reason: America's hemophiliacs are dying in startling numbers -- more than 1,500 so far. But they are not dying from their congenital bleeding disorder, which ravages joints and muscles. They are dying from AIDS contracted during the early '80s while using tainted clotting medicines, known as Factor VIII and Factor IX. More than 50 percent of the nation's hemophiliacs -- at least 10,000, are HIV-positive.

And now, after years of silently accepting their fate, the nation's hemophiliacs want answers. They want to know why the National Hemophilia Foundation and the U.S. government did not do more to ensure the safety of blood-clotting medicines when their link with AIDS first became apparent.

Finally, they want to know why the United States is one of only a handful of Western industrialized nations that has not set up a compensation fund for AIDS-infected hemophiliacs and their families to help with spiraling medical costs.

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