I apologize to our NBS colleagues for whom this is a duplicate email from the NBS-LIST.  

It's a great time in politics to educate our legislators about genetic conditions, NBS, and genomics!

Lori

________________________________________
From: Vaz, Sharon A. [[log in to unmask]]
Sent: Tuesday, November 10, 2009 3:36 PM
To: Allen, Jennifer J.; Applekamp, Laurie; Burk, Patricia A.; Cain, Joan B. (HSC); Carpenter, Nancy J.; Carte, Amy H.; Caton, Lisa R.; Cavett, Danny (HCA); Corpolongo, John M.; Cox, Grant; Craft, Melissa; Davis, Patti; Dooley, Suzanna D.; Geisler, Terry C.; Gower, Melissa; Hassed, Susan J. (HSC); Heather Poole; Hylton, Karen; James Lewis; Johnsen, Terry; Kayser, Michael; Lorg, Tara; McKee, Garry L.; Mitchell, Lynn; Mulvihill, John J. (HSC); Neas, Barbara R. (HSC); Pearson, Kay; Rhoades, Edd; Rindler, Mary; Scheid, Dewey C. (HSC); Stone, Frank P.; Struby, Jim; Terrell, Linda; Thomas, Linda; Vann, Paula J.; Vaz, Sharon A.; Wagner, Andrew F.  (HSC); Weatherford, Larry; Williamson, Lori L.  (HSC)
Subject: FW: [NBS-LIST] Good news!!!

FYI - Legislation to provide health insurance coverage for children with rare metabolic disorders.

-----Original Message-----
From: Newborn Screening Inquiry/Discussion List [mailto:[log in to unmask]] On Behalf Of Jill Levy Fisch
Sent: Tuesday, November 10, 2009 3:29 PM
To: [log in to unmask]
Subject: [NBS-LIST] Good news!!!

FOR IMMEDIATE RELEASE: November 10, 2009CONTACT: Jodi Seth/Whitney Smith, 202-224-4159    Kerry Legislation Provides Medical Coverage to Children with Rare Health Disorder WASHINGTON, D.C. – Senator John Kerry (D-Mass.), a senior member of the Finance Committee, today introduced legislation to provide health insurance coverage for children with rare metabolism disorders. The Medical Foods Equity Act of 2009 will require medically necessary food and supplements to be covered by both federal health programs and private insurance plans.  Each year, an estimated 2,550 children in the United States are born with rare metabolic disorders caused by a defect in a single gene.  Effective treatment of these disorders requires special foods and supplements that lack the nutrients these children’s bodies reject. “These special foods and supplements are the medicine these kids need to lead healthy lives, and insurance companies need to respect that,” said Kerry.  “These kids shouldn’t suffer because the financial burden is too great for their families.  This legislation provides an affordable means for getting these children what they need to be well.” The Medical Foods Equity Act: • provides coverage for medically necessary foods and supplements in federal health programs (Medicare, Medicaid, CHIP, and TRICARE) and the private health insurance market (fully insured group health plans, self-insured group health plans, and non-group health plans);   • requires the Secretary of Health and Human Services to make a determination of minimum coverage levels for medically necessary foods and supplements for certain rare metabolic conditions; and   ∙         defines “medically necessary food” under the Food and Drug Administration’s classification as food “which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation.” The Medical Foods Equity Act is endorsed by more than forty health organizations including American College of Medical Genetics, the Children’s Rare Disease Network, and Genetic Alliance.

Jill Levy-Fisch
President
Save Babies Through Screening Foundation
www.savebabies.org
[log in to unmask]
914 588 1127. Ph
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