A survey of phlebotomy among persons with hemochromatosis

BACKGROUND: One in 10 whites in the United States is a carrier for hemochro matosis and an estimated 1 in 200 is clinically affected. Early treatment w ith therapeutic phlebotomy to remove excess iron can prevent associated chr onic diseases. However, little information is available on the amount of bl ood withdrawn or the rates of withdrawal from hemochromatosis patients. The patterns of therapeutic phlebotomy and the magnitude of charges in persons with hemochromatosis were surveyed, STUDY DESIGN AND METHODS: Surveys were mailed to persons with hemochromatos is identified by health care providers, blood centers, patient advocacy gro ups, and the Internet. There were 2362 respondents to the survey from the U nited States. RESULTS: Thirty-seven percent of respondents reported being voluntary blood donors prior to diagnosis. The mean rate of therapeutic phlebotomy for iro n depletion was 2.6 units per month (mean duration, 13 months). The mean ra te of maintenance phlebotomy was 0.5 units per month. Therapeutic phlebotom y rates Varied by sex, age, reason for diagnosis, and severity of symptoms. Seventy-six percent of respondents reported full or partial insurance cove rage of therapeutic phlebotomy charges. Seventy-six percent received therap eutic phlebotomy services in a hospital or physician's office and 30 percen t in a blood center. Charges for therapeutic phlebotomy varied by site, wit h a mean cost of $90 in hospitals and $52 in blood centers. Fifty-four perc ent of respondents attempted to donate blood after their diagnosis but were excluded. CONCLUSION: The amount of brood withdrawn from persons with hemochromatosis is substantial. The location where patients received phlebotomy services a ppears to be influenced by charges and time since diagnosis.