Hereditary Hemochromatosis Donation Program

Hereditary Hemochromatosis Donation Program

Hereditary Hemochromatosis (HH) is a genetic disease that results in iron overload. The preferred treatment for reducing iron stores is periodic phlebotomy.

In the past, the U.S Food and Drug Administration (FDA) required that blood collected from people with HH be discarded unless it was labeled as donated by an individual with this condition. Unfortunately, this differentiation of HH labeled blood from volunteer community blood caused hospitals to decline blood from HH donors.

In 2001, however, the National Institutes of Health (NIH) concluded that “blood donors with (hereditary) hemochromatosis… do not pose a greater risk to blood safety than other donors,” (NIH press release, 9/25/01). There was no longer a need to distinguish HH blood from community blood. Now, blood centers may receive a variance from FDA regulations that allows them to use this blood for transfusion, without labeling it as HH blood. Blood Centers of the Pacific (BCP) received such a variance in January, 2003.

If an individual with HH meets the criteria for community blood donors, their blood can now be used for transfusions, and BCP will collect their blood free of charge. If they are not eligible, BCP will still perform the therapeutic phlebotomies free of charge, although the collected blood will not be used for transfusion.

The phlebotomy frequency for each HH patient is determined by their personal physician. Patients who require phlebotomy more often than every 56 days will require a prescription or doctor’s order specifying the frequency.

HH patients who have had previous therapeutic phlebotomies at BCP must be evaluated for donor eligibility before their first community blood donation. Once they are eligible, HH donors can donate at any BCP donation center. Mobile blood drives, however, are not able to take HH donors at this time.

For more information, please contact Rosie Lamoreaux in Special Donations at 415-749-6657.