In reflecting on lessons learned, Dr. David perceived the FDA and the NIH as remote entities that had no influence on daily practice. In addition, Dr. David stated that most of the information on AIDS came from the NHF and their bulletins, and personal contacts. She said, "The FDA did not realize that the NHF and from MASAC represented a certain small group of doctors and how much was getting out to the hemophilia community was a little bit questionable. The grassroots level was really doing its own thing. Our group was more in the middle, and I think that I was more advanced because I had many informal contacts."

Case Study Four: Prescribing Cryoprecipitate for a Newborn and Continuing AHF Concentrate Treatment for a Four-Year-Old

This case study is about a father who relied on and trusted the medical experts (i.e., MASAC and other physicians) and did not question the NHF recommendations made on January 14, 1983 (i.e., to treat newborns, newly diagnosed hemophiliacs, children under four, and mild hemophiliacs with cryoprecipitate, and to continue to treat others with AHF concentrate).

Robert Thomas is a father of two sons with severe hemophilia, both born during the period when HIV was entering the blood supply. His older son, John, born in 1979, is HIV positive; his younger son Steven, born in 1982, is not.

When Mr. Thomas's first son was born, the new father did not know anything about hemophilia. His son had his first bleed in March 1980, when he was eight months old. The physician tested him and Mr. Thomas was told that his son was a hemophiliac. Initially, he was not concerned about the risk of hepatitis, because he was overwhelmed with learning how to deal with hemophilia. He soon learned to "roll with it" and became comfortable with the treatment recommended by his physician. He learned that hemophilia could be easily treated through the use of AHF concentrate, which was infused by the staff at the hospital. Reflecting on this, Mr. Thomas stated that "he did not know enough to ask a lot of intelligent questions, and did not understand enough to be assertive." After this, his son did not receive many infusions until he was 15 months old. On October 31, 1980, his son had surgery for a blot clot in his spinal cord that had left him paralyzed. During surgery he received thousands of units of AHF concentrate. The surgery was not successful; his son remained paralyzed. At some point, his son contracted post-transfusion chronic hepatitis infection.

In 1981, Mr. Thomas decided to join his local chapter of the National Hemophilia Foundation, and he became its president. The active membership of the chapter, at the time, consisted of five members: an individual with hemophilia, Mr. Thomas, and three other parents of individuals with

The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement