SBA Advocacy Work

The Spina Bifida Association is the only voice of the Spina Bifida community—advocating for programs, agencies and policies that help advance research, improve access to specialized, quality care of people with Spina Bifida and raise awareness about the birth defect.

Our Policy Agenda

With more research coming out of the National Spina Bifida Patient Registry and the development of the Guidelines for Care of People with Spina Bifida, we must continue our work to expand access to high-quality care for people with Spina Bifida of all ages. Support for federally funded research as well as programs that foster access to specialized, quality Spina Bifida care can help improve the lives of those with this complex birth defect. The Spina Bifida Association urges federal and state elected officials to join us in our efforts to improve the health and lives of those with Spina Bifida.

We encourage decision-makers to create and maintain policies that:

Support Innovative Research by:

•  Increasing the number of clinics in the National Spina Bifida patient registry.
•  Increasing funding of research on treating adults with Spina Bifida.
• Development of a patient-centered research agenda
• Providing the National Institutes of Health (NIH) with the funding needed to support new breakthroughs in Spina Bifida

Promote Access to High Quality, Specialized Spina Bifida Care by:

• Promoting public and private coverage of critical Spina Bifida care, supplies, and durable medical equipment without burdensome barriers that could negatively impact health
• Expanding Medicaid to more beneficiaries and protecting the quality and scope of covered services in the program
• Extending funding for the Children’s Health Insurance Program (CHIP) and ensuring its continued viability
• Finding ways to educate clinicians about treating adults with Spina Bifida

Protects Medicaid, Medicare and other State and Federal Programs by:

• Maintaining funding for state health programs that provide vital support to people with Spina Bifida and their families
• Protecting access to quality, specialized health care services, including Spina Bifida clinics
• Ensuring regulations governing disability benefits at the Social Security Administration (SSA) are appropriate and allow access to these vital resources for those who need them

Raising Awareness about Spina Bifida

We need the support of elected officials in Washington to fulfill our mission to promote the prevention of Spina Bifida and improve the lives of those affected by it. Elected officials play a key role in supporting the Spina Bifida community. The Spina Bifida Association:

• Encourages U.S. Representatives to join the Congressional Spina Bifida Caucus which serves as a voice for those with Spina Bifida in the House and raises awareness about the
  birth defect and its complex conditions
• Provides expertise to the Spina Bifida Caucus on initiatives that improve the quality of life for people with Spina Bifida
• Urges other elected officials to collaborate with the Spina Bifida Caucus on issues that benefit the Spina Bifida community

Policy Principles

Our work to ensure that people with Spina Bifida have access to high-quality, specialized care is guided by five core principles.

The Spina Bifida Association promotes policies to help ensure that all people with Spina Bifida have access to high-quality, specialized care and adequate, affordable health insurance. We also support policies that contribute to a health care system that best serves all people living with the birth defect and its related conditions. Our core principles include:

•  Accessibility: Access to qualified clinicians, trained in care of people with Spina Bifida, from childhood through adulthood.
• Adequacy: Adequate health insurance covers care delivered by qualified clinicians using the latest research, clinical guidelines and best practices.
• Affordability: Affordable health plans help ensure access to needed care in a timely manner from an experienced provider without undue financial burden.
• Availability: Available health coverage provides adequate benefits at an affordable cost regardless of an individual's income, employment, health status or geographic location.
• Transparency: Transparency around health care information can help ensure people with Spina Bifida, clinicians and institutions have all available evidence when making important health decisions.