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.

Policy Updates:

February 2024

U.S. Census Bureau Halts Proposed Changes to Disability Survey Question – In January, the Spina Bifida Association (SBA) as part of the Disability & Rehabilitation Research Coalition (DRRC) responded to Proposed Changes to Disability Questions in the 2025 American Community Survey (ACS). SBA believed the proposed changes would undercount the population of people living with disabilities – reducing national disability prevalence estimates by 41%. The consequences of this false drop could impact programs and funding for services.

On February 6, 2024, the Census Bureau announced it received more than 12,000 public comments about the proposed changes. “Based on that feedback, we plan to retain the current ACS disability questions for collection year 2025. Along with our colleagues at Office of Management and Budget (OMB), National Center for Health Statistics (NCHS) and other statistical agencies, we will continue our work with stakeholders and the public to better understand data needs on disability and assess which, if any, revisions are needed across the federal statistical system to better address those needs.”  Robert L. Santos, Director, U.S. Census Bureau announced in an agency post.

H.R. 6860, the Restore Protections for Dialysis Patients Act – SBA continues to lend its support to and participation in the Restore Act/Kidney Care Access Coalition. The Coalition, made up of kidney care and patient advocacy organizations, applauds the introduction of H.R. 6860, the Restore Protections for Dialysis Patients Act.

A June 2022 Supreme Court ruling undermined important protections for End-Stage Renal Disease (ESRD) patients and their families, making life more difficult for an already vulnerable population. H.R. 6860 would reverse the negative, unintended consequences of the ruling and restore critical protections for families struggling with a life-threatening illness.

Nearly 37 million Americans live with kidney disease, and over 800,000 people in the U.S. have ERSD. The disease disproportionately impacts people of color, patients from historically disadvantaged communities, and those who have co-occurring chronic health conditions. For these patients and their families, the Coalition is urging Congress to take action to prevent this discrimination, restore protections, and ensure families can stay on their private health coverage they paid for – despite the diagnosis of a deadly disease.  Click here for more information about H.R. 6860.

Support for Healthy Start – SBA joined the National Healthy Start Association and other organizations, including the Association of Maternal & Child Health Programs, in sending a letter to House and Senate leadership to fund Health Start at its current allocation of $145 million.

The current House funding bill contains concerning cuts to Maternal and Child Health Services (MCH) Block Grant and public health programs, including zeroing out the Healthy Start program.

Funding for this program was eliminated in H.R. 5894 under the mistaken notion that it is duplicative of the Maternal, Infant, and Early Childhood Home Visiting (MIECHV) program. It is not. The letter sent to leadership clarified the misconception, delineated key differences, and urged strong support for the Healthy Start program.

H.R. 3226/S. 1573 PREEMIE Reauthorization Act and H.R. 3838/S. 2415 Preventing Maternal Deaths Reauthorization Act – SBA joined March of Dimes, the American College of Obstetricians and Gynecologists, Association of Maternal & Child Health Programs, the Society for Maternal-Fetal Medicine, and other groups in sending a letter asking congressional leaders to consider including the PREEMIE Reauthorization Act of 2023 and the Preventing Maternal Deaths Reauthorization Act of 2023 in a final FY 2024 budget. These critical bills will reauthorize essential maternal and infant health programs and research at a time when maternal and infant death rates, especially in communities of color, have increased dramatically.

The need for ongoing work to improve maternal and infant health is more important than ever as our nation is in the midst of a dire maternal and infant health crisis. In 2021, preterm birth rates rose to a 15-year high, the maternal mortality rate continued to rise making the U.S. one of the most dangerous places to give birth in the developed world, and there are unacceptable disparities in birth outcomes. In fact, a recent report from Centers for Disease Control and Prevention’s (CDC) National Center for Vital Statistics showed that infant mortality increased by 3% in 2022, marking the first time in more than two decades the U.S. has seen a year-over-year increase in infant deaths. As a nation, we can and must do better at preventing avoidable maternal and infant deaths.

The letter asks Congress to address this crisis through bipartisan policies focused on increasing access to quality and equitable health care, supporting healthy moms and babies, and improving research and surveillance.

SBA Support of Citizen Petition urging the FDA to require warning labels on all corn masa flour and tortilla products that lack adequate folic acid fortification. – SBA supports a petition to the FDA that would require there be a warning label on all unfortified corn masa flour products alerting consumers that the product does not contain added folic acid and that the lack of folic acid increases the risk of serious neural tube birth defects.

Specifically, the petition requests that a warning label be required on the front of corn masa flour packages in a clear and conspicuous font and color and that the warning be contained in a visually distinctive box. Such a warning statement is urgently needed to inform all consumers who purchase corn masa flour of the critical public health risks posed by products that lack adequate levels of added folic acid. For more information about the petition, click here.

Joint ITEM/CPR Coalition Comments on Proposed Rule Updating Title II Regulations: Nondiscrimination on the Basis of Disability; Accessibility of Medical Diagnostic Equipment of State and Local Government Entities (RIN: 1190-AA78) – On January 9, 2024 the Civil Rights Division of the Department of Justice (DOJ) issued a Notice of Proposed Rulemaking (NPRM) under title II of the Americans with Disabilities Act (ADA), regarding Medical Diagnostic Equipment (MDE). According to the NPRM titled, Nondiscrimination on the Basis of Disability; Accessibility of Medical Diagnostic Equipment of State and Local Government Entities, the DOJ is proposing to adopt specific technical standards and scoping requirements for different types of MDE. These standards are designed to address the barriers faced by individuals with disabilities when accessing MDE, thereby promoting inclusivity and equality in healthcare services. The primary objective of this proposed rule is to ensure that individuals with disabilities have equal access to healthcare services, programs, and activities offered by all State and local public entities.

The ITEM and CPR Coalitions submitted a joint comment letter in strong support of the overarching goal of ensuring nondiscrimination in the provision of health programs and urging the DOJ to expeditiously finalize this rule to protect the ability of all individuals to access the health care services they need without fear or impact of discrimination.

January 2024 report.

December 2023 report.