Let Your Voice Be Heard

Let Your Voice Be Heard

By Sara Struwe, SBA President & CEO

With over 20 Capitol Hill meetings down and Congress now in recess, SBA is planning our next steps for federal advocacy. It’s been a crazy few months trying to keep federal funding for critical Spina Bifida programs.

A few weeks ago, the American Health Care Act (AHCA) was introduced into the House to gut the Affordable Care Act (ACA). After the AHCA failed, this week the White House tried to work out the issues that caused its failure. As of Thursday, when Congress recessed, those efforts were unsuccessful.


No one thinks that the ACA was perfect, but for the Spina Bifida Community, it was progress compared to years of people with Spina Bifida not getting health insurance due to pre-existing conditions. Come on…If you are born with it, of course it is pre-existing, but should that really PREVENT you from health insurance? OF COURSE NOT! Additionally, people could finally get subsidized insurance. We can always argue that the subsidies should have been more, but at least there was something. If that wasn’t enough, how about the fact that the lifetime cap was eliminated?

All of these pieces of protection that ACA put in place were critical to our community, but so was the funding of the National Spina Bifida Program (NSBP).  The NSBP established the first national registry on Spina Bifida, the National Spina Bifida Patient Registry. Now, the registry has over 7,500 people, and it’s starting to supply us with important, useful information. 

Consider this:  Early on the registry identified the need to protect the kidneys of children with Spina Bifida. People with Spina Bifida see renal failure happening at a younger age than the overall population, and they are less likely to get life-saving transplants than the general public. So if we don’t start protecting kidneys early, this life-threatening situation will continue.

Because of the NSBP, we are testing THE FIRST protocols designed to protect a child’s kidneys from birth to age five. Once these protocols are tested and confirmed, we will get clinics to adopt them across the country. It’s the first step in developing true standards of care for our Spina Bifida population— because right now…they don’t exist.

The NSBP also funded the FIRST large-scale survey on the health of adults with Spina Bifida. This data will help us to prove what we already know…there is NOT enough focus on the health care of adults with Spina Bifida, and it is costing people’s health and lives.

Now more than ever, it is CRITICAL that SBA and the Spina Bifida Community stand together in the face of the upcoming battles that we will have over the next few years. We need to start now, and we need your help.

Whatever you do…PLEASE do this! You can help make a difference for all those affected by Spina Bifida and for the future of our health care

Here’s how you can help:

  1. Check the list of Representatives and Senators that SBA has visited and see if your state or district is there (see below). Not sure who your Representatives are? Find out here. 
  2. If it is, then call or email your Representative or Senator and ask that he or she increase the funding for the National Spina Bifida Program to $6.5 million and fully fund the National Center on Birth Defects and Developmental Disabilities (NCBDDD).
  3. Tell your Representative your story and the challenges that you have faced with your health care.
  4. Share your story with us. We are a team!

Representative List

Rep. Marth Roby (Alabama District 2)

Rep. Steve Womack (Arkansas District 3)

Rep. Roybal Allard (California District 40)

Rep. Rosa DeLauro (Connecticut District 3)

Rep. John Moolenaar (Michigan District 4)

Rep. Chuck Fleischmann (Tennessee District 03)

Rep. Mark Pocan (Wisconsin District 2)

Senator List

Sen. Richard Shelby (Alabama)

Sen. Chris Murphy (Connecticut)

Sen. Marco Rubio (Florida)

Sen. Brian Schatz (Hawaii)

Sen. Dick Durbin (Illinois)

Sen. Thad Cochran (Mississippi)

Sen. Jeanne Shaheen (New Hampshire)

Sen. Jeff Merkley (Oregon)

Sen. Jack Reed (Rhode Island)

Sen. Lamar Alexander (Tennessee)

Sen. Lindsey Graham (South Carolina)

Sen. Shelley Moore Capito (West Virginia)

Sen. Joe Manchin (West Virginia)

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