'I am angry that my sons are dying'

WASHINGTON — WASHINGTON -- First her brother died of AIDS. Then her middle son. Now her youngest, whose wife already died of the disease, is wasting away. Her eldest son, too, is infected with the human immunodeficiency virus, which causes AIDS.

For nearly a decade, Ethel Livingston of Baltimore County has kept quiet. Her brother and sons were born with hemophilia and were infected with the virus that causes AIDS by the blood products they used as treatment. Fearful of discrimination, they begged her to keep their HIV status a secret.


But now her sons are dead, dying or unable to work -- and yesterday Ms. Livingston went to the nation's capital and broke her silence. "I am angry. I am angry that my sons have to suffer. I am angry that my sons are dying, that my grandchildren will have no fathers," said Ms. Livingston. "No one ever told me I would watch all my sons die."

She and eight other Maryland women -- mothers, nieces, sisters and wives of hemophiliacs who are dead or dying of AIDS -- were among about 100 people who yesterday picketed outside the National Academy of Sciences to protest what they called the "hemophiliac holocaust." Inside, about 50 people -- hemophiliacs or their relatives -- gave outraged and often heart breaking testimony about the pain they have suffered because of AIDS, pain that they said could have been prevented.


"I want to see some justice," said Lisa Smith, who came from Nevada to testify on behalf of her hemophiliac husband, who died of AIDS.

The hearing, sponsored by the Institute of Medicine, is part of an 18-month investigation called by Health and Human Services Secretary Donna Shalala to look into why thousands of cases of AIDS were contracted through the nation's blood supply.

Hemophiliacs suffer from a genetic disorder that prevents the blood from clotting. To offset or to prevent bleeding, they treat themselves with blood clotting factor, which is concentrated from human blood.

Nearly 50 percent of the 20,000 hemophiliacs in the United States are infected with the AIDS virus. More than 2,000 hemophiliacs have died of the disease since the early 1980s.

At the hearing, those who testified accused the companies that process blood into clotting factor of having failed to warn them of the risks of getting HIV from their products. And they blamed the Food and Drug Administration for alleged failure to enforce blood safety regulations.

"I murdered my child but I did not do this alone," said Petra Jackson of Miami, who administered factor to her son, who died of AIDS. "The drug companies knew the gun was loaded and they allowed me to shoot."

Often the testimony came from women -- mothers, wives, aunts and daughters -- because hemophilia, a genetic disorder, is passed down from females to males.

"A lot of the men are getting sick, so they can't speak up for themselves, and it won't matter who knows they are HIV positive anyway, because they're no longer working," said Emily Miller, a Baltimorean whose husband, Jim, died of AIDS on July 3.


The HIV infections occurred from 1979 until 1985, the year when testing began for HIV contamination in the blood supply.

The American Blood Resources Association, a trade group representing more than 350 manufacturers, issued a statement that read, in part: "There was a lack of information that existed in the time frame under study [1982-1986] with regard to whether AIDS was transmissible through either blood or blood products."

"[The companies] are hoping they'll all die off, and then they'll be forgotten about," said Sarah Myers, a Baltimore County mother who came to protest on behalf of her 26-year-old hemophiliac son, who tested positive for HIV in 1985.

"But they're wrong. Because we're the mothers, the ones who raised them and cared for them and we will be the ones who won't forget them."