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Hemophilia and HIV

What is Hemophilia and How Does it Intersect with HIV?

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Updated March 14, 2010

Prior to routine screening of the donated blood supply, people receiving blood and blood products were put at considerable risk for acquiring HIV. No one population was as universally at risk as were people living with the blood clotting disorder, hemophilia. Let's take a look at hemophilia and why it has intersected the world of HIV.

What is Hemophilia?

Hemophilia is a genetic disorder characterized by lower than normal clotting factors circulating in the blood. With these abnormally low levels of clotting factors, blood clotting is prolonged which places the patient at risk for abnormal bleeding. People living with hemophilia often need hospitalization for bleeding into joints such as the elbows and knees or abnormal bleeding after trauma or breaks in the skin. Because hemophilia is genetically linked to sex determining genes, hemophilia strikes almost exclusively males.

Why are Hemophilia and HIV Associated?

Prior to 1992, there was not a screening tool available to guarantee that donated blood products were HIV free. Unfortunately, people living with hemophilia require regular transfusions of clotting factors in order to maintain a normal blood clotting system. Therefore, those hemophilia patients receiving untested and unscreened clotting factor prior to 1992 were at an extreme risk for contracting HIV via the very blood products that were saving their lives. To add to the already high risk was that the blood factors they used were not from just one source. Rather they were pooled from several different donors, HIV positive and negative alike. Meaning that blood that was HIV free was later contaminated during the pooling process.

Ricky Ray - HIV Infection that Didn't Have to Happen

Ricky Ray and his two brother were all hemophiliacs and received regular transfusions of blood products to maintain their clotting system. Unfortunately, all three contracted HIV from what was believed to be HIV tainted blood products. They were not alone. Over 10,000 people living with hemophilia contracted HIV from the tainted blood supply. What's worse is that it was later found that agencies ignored warnings that HIV was spreading rapidly though the hemophilia population and allowed HIV infected people to donate blood. Additionally, the Canadian Red Cross who managed the Canadian blood supply in the mid 80's knowingly allowed tainted blood to be given to hemophilia patients.

The Ricky Ray story is a tragic one. After being diagnosed with HIV, Ricky Ray and his brothers were kicked out of school for fear they would spread their HIV to other students. Eventually they were forced to go into hiding after their house was burned down in attempt to make them leave the community. So outrageous was this injustice that in 1998, Congress passed the Ricky Ray Hemophilia Relief Fund Act, paying restutution to those hemophilia patients who contracted HIV from July 1, 1982 to December 31, 1987.

What's the Status of Hemophilia and HIV Today?

Today there are extensive screening tools in place that prevent HIV infected blood from entering into the blood supply. New HIV infections due to hemophilia are all but past history. Unfortunately, hemophilia patients not only contracted HIV from the blood products they received but another bloodborne illness made it's way into the hemophilia population; hepatitis C. Sadly, many of the hemophilia patients infected with HIV in the mid 80's and early 90's have lost their battle with HIV or hepatitis C. But for those who are still waging the war, they should not be the forgotten HIV population.

Sources:

Hemophilia Galaxy - Hemophilia Glossary of Terms; August 2006,

US Department of Health and Human Services - Ricky Ray Hemophilia Relief Fund; Federal Register: September 29, 2005 (Volume 70, Number 188).

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