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Safety of Nation's Blood Supply a Prime Concern for Hemophiliacs

Posted on: Thursday, 30 March 2006, 21:00 CST

ST. LOUIS _ The first people hurt when the nation's blood supply gets tainted are likely to be those whose lives depend on transfusions.

That's why blood safety is a major concern of the more than 400 people with hemophilia and other clotting disorders who are attending a national conference in St. Louis starting today.

Since the 1980s, blood contaminated with HIV or hepatitis C has infected about 7,500 of the estimated 20,000 people with hemophilia living in the United States, said Carl Weixler, president of the Hemophilia Federation of America, which is hosting the two-day conference at the Sheraton West Port.

Of those, about 5,500 have died, he said.

Most were infected before a blood test was developed to screen for the viruses.

As of 2004, about 9,500 people in the United States have developed AIDS through exposure to contaminated blood products or tissue, according to the Centers for Disease Control and Prevention.

About 300,000 people in the United States with hepatitis C acquired their infection through a blood transfusion, according to the CDC.

"We say it's the worse medically induced holocaust ever," said Weixler, 44, who lives in Kentucky. Weixler learned in 1987 that he had been infected with HIV from a tainted transfusion. The following year, he learned he had hepatitis C.

Today, the chance of becoming infected with either HIV or hepatitis C is about 1 in 2 million, according to the CDC.

In recent years, newly emerging diseases such as West Nile virus and the human variant of mad cow disease have posed new challenges for blood safety.

"The things we do as a community to safeguard the blood supply will protect the entire country," Weixler said. "We are the canaries in the coal mine."

Hemophilia is a clotting disorder that causes excessive and painful bleeding during or after an injury. Bleeding can occur in joints, muscles, the abdominal cavity, the brain or other organs, or spill outside the body.

Kathy Seward MacKay said it's important to keep the issue of blood safety alive. Her husband, David, died from complications of hepatitis in 1997 at 33. He had hemophilia, and was infected with HIV and hepatitis C transmitted through a transfusion.

"The universal message is that we need to be vigilant in protecting the blood supply because we are all just one car accident away from relying on a transfusion," MacKay said. "There are still cases of HIV that slip through, not a lot, but it happens. And we don't know what the next bloodborne virus will be."

Before 1985, the Food and Drug Administration screened blood for only two diseases _ syphilis and hepatitis B. Before tests for HIV were developed, rules were put in place in 1983 to prevent people from donating blood if they fell into one or more groups considered at higher risk of being infected, an FDA spokesman said.

The FDA licensed the first test for HIV in 1985 and the first test for hepatitis C in 1992.

After it was learned in 2003 that West Nile virus, which entered the country in the late 1990s, could be transmitted by blood, a test was developed in 2005 to screen for it.

Now there are new screening tests, and advances in technology have made the tests more likely to detect diseases.

"We have tests on top of tests now for hepatitis C and HIV," said Dr. Jerry Squires, senior medical officer for the national office of the American Red Cross.

The Red Cross provides about 45 percent of the nation's blood, the single largest supplier.

Some people with hemophilia now are transfused with a genetically engineered nonblood, or recombinant, product.

However, "a significant percentage is still dependent on the blood supply," Weixler said.

Corey Dubin, president of the Committee for Ten Thousand, an advocacy group for people with hemophilia, has been infected with HIV for 23 years and hepatitis C for 38 years. He said blood safety has improved greatly but he remains concerned about implementation of national standards.

The Red Cross has operated under an FDA consent decree since 1993, which stemmed from inspections that revealed persistent and serious violations of blood safety rules.

Today, there is growing concern about blood transmission of Creutzfeldt-Jakob disease, the human variant of mad cow disease. There is no screening test for it.

Three suspected cases have been identified in the United Kingdom, Squires said. Eating meat products contaminated with mad cow disease has been linked to more than 150 deaths worldwide from variant Creutzfeldt-Jakob disease, a rare and fatal nerve disease.

Anyone who has spent three months or more in the United Kingdom from 1980 through 1996, or who has spent five years in Europe from 1980 to the present, is asked not to donate blood in the U.S.

"We have people within the Red Cross, Association of American Blood Banks and other blood centers who spend a lot of their time looking at what new types of diseases might be transmitted by blood_what's on the horizon_what's the next virus, next bacterium that we have to worry about, that we will have to have a test for or donor deferral criteria for," Squires said.

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(c) 2006, St. Louis Post-Dispatch.

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Source: St. Louis Post-Dispatch

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