Associated Press - Tuesday, September 22, 1998
Laura Meckler, Associated Press Writer

Now the question is whether to add payments for people who picked up the virus through blood transfusions, which would more than double the cost of the bill. Hemophiliacs were infected by blood products that allow clotting.

The dispute, to be aired in a Senate committee Wednesday, has wound up pitting one group of victims against another.

"I thought we were all in this together, and I quickly found out it was a community vs. community kind of thing," said Steve Grissom, 49, of Cary, N.C., who received a transfusion of infected blood in 1985 while being treated for leukemia.

Hemophiliacs have been working for this legislation for five years. They fear the entire bill will die if another group of victims is added in the final days.

"There are certain political realities," said Val Bias of the National Hemophilia Foundation, who was infected with HIV while using a clotting agent.

Hemophiliacs and transfusion recipients were both infected during the early years of the AIDS crisis with blood donated by people who carried the HIV virus. The Institute of Medicine, a scientific organization that advises the government, later concluded that government caution, fear of criticism and inadequate leadership delayed effective screening of donors and proper blood testing.

In May, legislation named for Ricky Ray, a 15-year-old hemophiliac who died from AIDS, easily passed the House. It would give $100,000 to each of 7,200 hemophiliacs who contracted HIV through the blood supply, or to a close relative if the victim has died.

But in the Senate, Sen. James Jeffords, R-Vt., chairman of the Labor and Human Resources Committee, has insisted on including some 10,000 transfusion victims. He said he worries that once the hemophiliacs end their massive lobbying effort, the issue will disappear.

"These people deserve compensation," Jeffords said. "It's a substantial amount of money. To try and get it for a group that's unorganized will be quite difficult."

The National Hemophilia Foundation is a well-organized group of some 20,000 Americans who have put this legislation at the top of their agenda. By contrast, the transfusion victims barely know one another.

Hemophiliacs and their backers in Congress argue that adding the transfusion cases will make the legislation too expensive and too controversial to pass before Congress adjourns next month. The price tag would soar from $750 million to $1.7 billion. They say the hemophiliacs were infected under different circumstances.

Congress can come back and consider compensating for transfusion victims next year, they say.

"It's just a very practical issue. What can we get passed in the remaining three weeks?" said Sen. Mike DeWine, R-Ohio, who backs the House bill sponsored by Rep. Porter Goss, R-Fla.

In either case, the legislation being debated simply gives Congress permission to spend the money. The dollars still must be appropriated during normal budgeting, which wouldn't come until next year.

There was some talk of including all victims and giving each person less money. But now, Jeffords is working on a proposal to include both groups, but give the hemophiliacs first crack at the money just in case all $1.7 billion is not budgeted.

Hemophiliacs just want to be sure that whatever is decided, it passes this year.

"We have no objection to the transfusion issue being addressed," Bias said. "We are concerned that neither group will receive any funding and both will have to start all over."
980922
AP980910

Copyright © 1998 - Associated Press. Reproduction of this article (other than one copy for personal reference) must be cleared through the AP Permissions Desk.

AEGiS is a 501(c)3, not-for-profit, tax-exempt, educational corporation. AEGiS is made possible through unrestricted funding from Broadway Cares/Equity Fights AIDS, Elton John AIDS Foundation, National Library of Medicine, Pacific Life Foundation, and donations from users like you.

Always watch for outdated information. This article first appeared in 1998. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 1998. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .