Act Now on HHS Budget Cuts
Genetic Alliance supports all of the essential funding needed to continue bringing tests, therapies, and services to the public. We support successful public health programs, such as newborn screening, that improve the health of millions of Americans. We are dismayed at the cuts to HHS agencies in the House 2011 budget proposal. The proposed cuts would remove $1.6 billion from the NIH; $755 million from the CDC; $50 million from the Maternal and Child Health Block; $400 million from the National Science Foundation; and $222 million from the FDA. These cuts would devastate many critical programs and cripple the research endeavors needed to bring new tests and therapies to the public.
See a list of all program cuts.
Please act now! Contact the leaders of the House Appropriation Committee- Representative Harold Rogers,Chairman, and Representative Norman Dicks, Ranking Member- to help prevent these deep cuts from going into effect.
Don't stop there! Please contact your Congressman or Senator, especially if they are members of the House Appropriations Committee.
Advisory Committee to Discuss Direct-to-Consumer Tests
On March 8 and 9, the Molecular and Clinical Genetics Panel of the Medical Devices Advisory Committee will meet to discuss and provide recommendations to the Food and Drug Administration (FDA) about direct-to-consumer (DTC) genetic tests. The scientific issues to be discussed include the risks and benefits of making clinical genetic tests available for direct access by a consumer without a prescription, genetic carrier screening for hereditary diseases, and the level and type of scientific evidence appropriate for supporting DTC genetic testing claims. The FDA is accepting public comments until March 1.
Read the notice and submit comments.
NHGRI Publishes Vision for Future
In the February 10 edition of Nature, the National Human Genome Research Institute (NHGRI) published its vision for the future of genomic research. This report, entitled "Charting a course for genomic medicine from base pairs to bedside," was developed over a two-year period and is organized around five distinct domains: understanding the structure of genomes, understanding the biology of genomes, understanding the biology of disease, advancing the science of medicine, and improving the effectiveness of healthcare.
The authors write that achieving profound improvements in the effectiveness of healthcare "will depend not only on research, but also on new policies, practices and other developments."
Read the complete report.
Appropriations Committee Announces Earmark Moratorium
On February 1, Senate Appropriations Committee Chairman Daniel Inouye (D-HI) announced that the Committee will implement a moratorium on earmarks for the current session of Congress. Inouye stated that while he supports the current earmarking process, it makes no sense to accept earmark requests that have no chance of being enacted into law. President Obama has confirmed that he will veto any legislation containing them.
Read the Committee's press release.
Read Genetic Alliance's statement on earmarks.
Medical Foods Equity Act of 2011 Introduced
On February 8, Senator John Kerry (D-MA) introduced the Medical Foods Equity Act of 2011. If approved, it would provide for the coverage of medically necessary food under federal health programs and private health insurance. Currently, treatment for metabolism disorders that require such modified foods is not uniformly covered by insurance. The bill was referred to the Committee on Finance.
Read the Act.