AIDS virus haunts a generation of hemophiliacs

September 19, 1993|By Holly Selby | Holly Selby,Staff Writer

Jim Miller of Dundalk never envisioned himself as an activist, testifying before the city council, speaking out angrily on TV and protesting at a national conference.

Having battled hemophilia all his life, the 44-year-old father of three never dreamed he'd be fighting to survive AIDS, either.

His plight and his anger reflect a massive tragedy. About half the nation's hemophiliacs are HIV positive because the blood products prescribed for them contained the deadly virus.

For Mr. Miller, a huge burden became a crushing one. Hemophilia made his joints swollen, his movements painful. AIDS forced him to quit the job he loved, caused him to lose 40 of his 170 pounds and makes his hand tremble slightly when he reaches to grasp yours.

And AIDS has propelled the soft-spoken, former city maintenance supervisor into the limelight. "I've chosen to come forward, and I'll tell the world," he says. "If I don't do it, who will?"

By talking about hemophilia and HIV, at first softly, then with increasing vehemence, Mr. Miller is adding his voice to a growing chorus of reluctant activists.

He is one of about 10,000 hemophiliacs nationwide who are infected with the human immunodeficiency virus because they used contaminated blood-clotting factor -- the medical treatment meant to save their lives.

In the past few years, hemophiliacs, who historically have preferred to downplay their disorder and blend in with the mainstream, have filed lawsuits against the blood products industry, the medical profession and even the national organization that represents hemophiliacs.

They and their families are demanding better and more comprehensive health care. They are organizing networks of activists and are staging protests. And they have demanded an investigation into how tainted blood-clotting factor spread HIV among hemophiliacs.

Reparation sought

Early next month, at its annual meeting in Indianapolis, board members of the National Hemophilia Foundation hope to vote on a settlement package aimed at every HIV-infected hemophiliac -- and proposed by the pharmaceutical companies that sold the contaminated blood products. The foundation, whose members hope the package will include a range of assistance from financial to health, has asked the companies to unveil their proposal by Sept. 30, says Alan Brownstein, executive director of foundation.

In July, Health and Human Services Secretary Donna E. Shalala asked the Institute of Medicine, a division of the National Academy of Sciences, to investigate the transmission of HIV among hemophiliacs during the years 1982-1984. Her request came in response to calls for an investigation from Sens. Bob Graham, D-Fla., Edward M. Kennedy, D-Mass., and Rep. Porter J. Goss, R-Fla.

But to some hemophiliacs, these measures are too meager and too late.

"We want as many hemophiliacs as are infected to bring legal action against the pharmaceutical companies, the blood banks and the doctors," says Peter Hoffman, director of the Peer Association, a 2-year-old hemophilia organization, which stages protests with the AIDS group ACT-UP. "And we want a congressional investigation because Congress has greater subpoena power and can really scare these companies into coming forth with information."

Half are infected

L It could be said that a generation of hemophiliacs is dying.

From 1979 until 1985, when the HIV antibody test was made available, about two-thirds of all hemophiliacs nationwide were infected with HIV. Since 1987, there have been no new reports of hemophiliacs contracting HIV from blood products, according to the National Hemophilia Foundation.

Today, half of the 20,000 hemophiliacs living in the United States are HIV positive. "The number is getting lower because so many have died already," says Anne King, foundation spokeswoman.

Figures for how many HIV-positive hemophiliacs live in Maryland are not available. However, there may be as many as 507 hemophiliacs infected with HIV in Maryland, Washington, D.C., and the four surrounding states, says Elizabeth Hollomon, hemophilia coordinator for Maryland. Twenty-eight spouses or partners of hemophiliacs in the region also have been infected with HIV.

At a recent meeting of the Maryland chapter of the hemophilia foundation, bitterness and pain made voices raw with emotion. "We need help and we need it yesterday!" cried one mother. "My son died and my two others are dying!" said another. "We're victims!" shouted an HIV-positive man.

The irony of how HIV spread among hemophiliacs makes coping with the virus particularly hard, says Charles Robinson, an HIV-positive hemophiliac who serves on the mayor's AIDS Coordinating Council and who plans to attend the national convention in Indianapolis.

Clotting factor "changed hemophiliacs from being unable to live normally into people who could hold jobs and pay taxes," he says. "That very gift has thrown us into this abyss. It's a very difficult anger to deal with."

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