Blog PostsJun 12, 2024

Advocacy Alert – June 2024

A message from our COO, Mike Wood

The Spina Bifida Association of America (SBA) and the Hydrocephalus Association (HA) are co-hosting a Congressional briefing and happy hour on pediatric-to-adult transition Thursday, June 20 at 4 p.m. EDT in Rayburn House Office Building, Room 2044.

We need your help to get as many Members of Congress and/or their staffers to the event as possible. You can help by calling their offices and asking them to attend. This link will take you to a page where you can find a sample script for a phone message and also look up their contact information.

If you aren’t comfortable calling, you can also send an email invitation by using this link.

SBA and HA are co-founders of the National Partnership for Pediatric-to-Adult Care Transition (NPPACT), a coalition of organizations fighting to make sure people with disabilities have access to quality, affordable healthcare when they become adults.

Spina Bifida is still taught in medical schools as primarily a pediatric condition, yet today, two-thirds of the 166,000 Americans living with this condition are adults. There are around 100 pediatric Spina Bifida clinics nationwide but only around 30 adult clinics. As a result, when Spina Bifida patients move into adulthood, they are often left without anyone to coordinate their care.

There is a good framework in place for how transition should occur, but if there is no adult healthcare infrastructure for patients to transition to, what does it matter? Addressing this challenge is the No. 1 priority at SBA, but unfortunately, it is a complex challenge that doesn’t have a single solution. One way to make progress is by mobilizing like-minded organizations as we are doing through NPPACT to press the federal government to invest more resources into studying the barriers to an effective adult healthcare system for people with disabilities and crafting solutions to overcome those barriers.

If you care about this issue, please contact your Members of Congress and ask them to join us June 20. We need all the help we can get!