Whether on our own or with partner organizations, SBA has visited more than 50 offices on Capitol Hill this year, working to make sure that the needs of people living with Spina Bifida are known to our country’s lawmakers. Here is what we have been working on:
The Fight for Health Care for People with Spina Bifida
For individuals with Spina Bifida, a pre-existing condition, repealing the Affordable Care Act (and cuts to Medicaid and Medicare) could be devastating. With partners like theITEM Coalition and Friends of the National Center on Birth Defects and Development Disabilities (NCBDDD), SBA has been educating Members of Congress about the health and lives of those living with the birth defect and rallying community members to share their personal stories with lawmakers.
Continued Funding for the National Spina Bifida Program (NSBP)
SBA has been hard at work advocating for continued funding for the NSBP at the Centers for Disease Control and Prevention (CDC). The NSBP funds the National Spina Bifida Patient Registry, the Spina Bifida Collaborative Care Network (SBCCN), and other research in Spina Bifida at the NCBDDD. The research at the NCBDDD is the only research happening on the federal level that looks at Spina Bifida as a whole and considers the interdisciplinary teams necessary to treat people with Spina Bifida.
National Institutes of Health (NIH) Funding for Spina Bifida Research
NIH funding related to Spina Bifida is small, but important. Recently, SBA and the NCBDDD moved the National Institute of Digestive Diseases and Kidneys (NIDDK) to be interested in congenital conditions like Spina Bifida, which can have a lasting impact on the kidneys.
Corn Masa Fortification
Last year, SBA, in partnership with the March of Dimes, National Council of La Raza, American Academy of Pediatrics, and Gruma, successfully completed its multi-year efforts to get the Food and Drug Administration to add folic acid to corn masa flour, which is a staple of the Hispanic diet. This year, SBA and its partners spread the word about the fortification and began to investigate the effects of folic acid consumption in light of the Department of Agriculture’s recommendation to focus on whole grains. By law, whole grains cannot be fortified. This shift in focus could lead to lower consumption of folic acid in this country, which may lead to an increase in births affected by Spina Bifida.
Sign on Letters
SBA has signed onto over 30 letters this year, combining our voices with over 100 organizations pushing Congress to remember the needs of people with Spina Bifida and others with chronic conditions when passing legislation. Our voices have also been heard by the Centers for Medicare and Medicaid Services when considering competitive bidding on urologic supplies.
As the only national organization that enhances the lives of those living with Spina Bifida and influences federal policy relating to the birth defect, we are so grateful for your voice and your generosity. To make a gift today, click here.
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