New Era of Preventing End-Stage Kidney Disease Act

New Era of Preventing End-Stage Kidney Disease Act

This bill addresses rare kidney diseases through research, training for health professionals, and other means. It also modifies requirements for Medicare drug plan formularies that include drugs for rare diseases or conditions.

The Department of Health and Human Services (HHS) must

• convene a conference focused on diagnosis and treatment of rare kidney diseases;
• study risk factors, access to care (including to genetic and genomic testing), and other matters related to rare kidney diseases; and
• establish grants for supporting kidney disease education and referrals in communities of color.

HHS may award grants to educate and train health professionals about kidney disease and nephrology. Additionally, health professional schools that receive certain HHS funding for educating underrepresented minority individuals must support postgraduate nephrology training.

The National Institutes of Health (NIH) must report on diversity in its kidney disease research. The NIH may also (1) support research on rare kidney diseases that, among other requirements, includes persons of color in study populations; and (2) establish regional centers of excellence for rare kidney diseases.

The Centers for Medicare & Medicaid Services must evaluate methods for (1) treating rare kidney diseases, with a focus on delaying dialysis and transplant; and (2) raising awareness about rare kidney diseases, including in communities of color.

Furthermore, if a Medicare drug plan formulary includes a drug to treat a rare disease or condition, at least two members of the committee that develops or reviews the formulary must have expertise in the field of medicine related to that drug.