In its report on the fiscal year 1999 budget for the Department of Health and Human Services (DHHS), the House Committee on Appropriations stated:

"The Committee remains supportive of NHLBI's hemophilia gene therapy research program and urges renewal and expanded research emphasis in this critical area. In light of the research opportunities in hemophilia gene therapy, the Committee urges the Institute to develop a research action plan, working with NIAID and the hemophilia scientific and medical community, that fully addresses complications of hemophilia and other bleeding disorders. In developing such a plan, NHLBI also should work collaboratively with NIDDK on how to improve hepatitis treatment options for persons with hemophilia. The Committee requests a report by March 31, 1999 on the status of these efforts." (House Report Number 105-635, pages 66-67).

"Last year the Committee encouraged NIAID, working with the national hemophilia leadership, to determine further research steps to address the complications of hemophilia, including treatment for HIV/AIDS and viral hepatitis. The Committee urges NIAID to develop a research action plan, working with the hemophilia scientific and medical community, that fully addresses the complications of hemophilia and other bleeding disorders. In developing such a plan, NIAID should work collaboratively with NIDDK on how to improve hepatitis treatment options for persons with hemophilia." (House Report Number 105-635, page 77).

The Senate Committee on Appropriations included similar language in its report on the fiscal year 1999 budget for the DHHS:

"The Committee remains supportive of NHLBI's hemophilia gene therapy research program and encourages expanded research emphasis in this critical area. In light of research opportunities in hemophilia gene therapy, the Committee urges NHLBI to develop a collaborative research plan with NIDDK, the National Human Genome Research Institute, and the hemophilia scientific and medical community for the development of promising hemophilia gene therapy technologies. The Committee requests a report on the steps taken by March 31, 1999. (Senate Report Number 105-300, page 94).

"Last year the Committee encouraged NIAID, working with the national hemophilia organizations, to determine further research steps to address the complications of hemophilia, including treatment for HIV/AIDS and viral hepatitis. The Committee urges NIAID to develop a research action plan, working with the hemophilia scientific and medical community, that fully addresses the complications of hemophilia and other bleeding disorders. The Committee further urges that in developing such a plan, NIAID should work collaboratively with NIDDK on how to improve hepatitis treatment options for persons with hemophilia. The Committee requests a report by March 31, 1999, on the status of these efforts." (Senate Report Number 105-300, page 104-105).

In response to this request, the following agenda has been prepared by the National Heart, Lung, and Blood Institute (NHLBI), National Institutes of Health (NIH), DHHS, in cooperation with the National Institute of Allergy and Infectious Diseases (NIAID), the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the National Human Genome Research Institute (NHGRI), and the NIH Clinical Center Hematology Service. The agenda was also submitted for review by the National Hemophilia Foundation and members of their Medical and Scientific Advisory Council.

Back Next