This bill would add programs to study, detect, and slow rare kidney diseases. It creates NIDDK Centers of Excellence on Rare Kidney Disease Research. The centers would get grants or cooperative agreements to do research, train clinicians, run public education, and support patient care needed for research. The bill requires coordination with other NIH institutes and the FDA. It also requires research to study genotype–phenotype links and bars the use of QALYs, DALYs, or similar measures that discriminate against people with disabilities.
The bill directs the Secretary of Health and Human Services to study testing, prevention, precision medicine, and treatment for rare kidney disease. The study must review routine urinalysis, biopsy quality, genetic and genomic testing (including APOL1), barriers to testing and counseling, social and biological risk factors, treatment patterns under Medicare, Medicaid, and private insurance, access to nephrologists, efforts to slow disease progression in the most affected populations, and patient trust. A report to Congress is required within 18 months.
The bill amends provider training rules to include kidney disease in primary care training and creates nephrology fellowships aimed at improving care for populations disproportionately affected by rare kidney disease and increasing the nephrology workforce.
It also directs the Secretary to run experiments on treatments that might delay or avoid dialysis or transplant, and to study public awareness methods. A report on those experiments and the awareness study is due to Congress within 24 months.
No publicly available information.
No publicly available information.