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U.S. Congress Federal Government Professional Societies Future and Ongoing Advocacy Initiatives |
Federal Government As a direct result of CAHF's efforts with Congress, the first federally-sponsored formal review of carrier screening policy in eleven years took place in February 2008 under the auspices of the National Institutes of Health (NIH). The conference, cosponsored by NHGRI and NICHD, brought together top-level thinkers from varied disciplines representing the most significant public and private entities examining carrier screening technology and policy, including representatives of ACMG and ACOG. These leading investigators and clinicians discussed the opportunities and obstacles to the implementation of pan-ethnic carrier screening for disorders such as SMA and related public policy implications. CAHF Executive Director Deborah Heine presented a plenary talk at the conference on current challenges facing the implementation of pan-ethnic carrier screening of SMA. Ms. Heine was paired for this talk with Dr. Thomas W. Prior of the Ohio State University Medical Center; the nation's foremost expert on SMA carrier screening and a member of the CAHF Scientific and Medical Advisory Board. CAHF continues to work closely with NHGRI and NICHD on moving towards the development of a protocol for pan-ethnic SMA carrier screening. Additionally, CAHF has begun to work with the CDC on an educational campaign to ensure that health care providers and patients are familiar with SMA and aware of SMA carrier testing options. |
