Advocacy Priorities

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.

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.

 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.

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 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.

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.