Sec. 3. Understanding and Slowing the Progression of Rare Kidney Disease Through Early Intervention, Testing, and Treatment
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The Secretary shall conduct a study on testing, preventative care, precision medicine, and treatment, with respect to rare kidney disease. Such study shall review— the impact of routine urinalysis on the timely diagnosis of rare kidney disease and on the quality of patient care following a diagnosis of such disease; the quality and reliability of kidney biopsy in the diagnosis of rare kidney disease; the utility and appropriate use of genetic and genomic tests in detecting kidney disease, including— advances in genetic and genomic testing, and in particular testing of the APOL1 gene, and whether such testing may improve the diagnosis and treatment of rare kidney disease; barriers to genetic and genomic testing, such as diagnostic, predictive, presymptomatic testing, and DNA sequencing clinical services, including an analysis of any existing barriers related to health insurance coverage of such testing and access to genetic counselors, pathologists, and other relevant professions; and strategies to increase routine urinalysis and other diagnostic testing and to improve technologies to diagnose such disease, including genetic testing, and to improve access to health insurance coverage of such diagnostic testing and technologies; the social, behavioral, and biological factors leading to rare kidney disease; treatment patterns associated with providing care, under the Medicare program under title XVIII of the Social Security Act ( 42 U.S.C. 1395 et seq. ), the Medicaid program under title XIX of such Act ( 42 U.S.C. 1396 et seq. ), and through private health insurance, to populations that are disproportionately affected by such disease; access to nephrologists among populations that are disproportionately affected by such disease; ongoing efforts and recommendations to slow the progression of end-stage kidney disease in populations that are disproportionately affected by rare kidney disease; and patient trust of treating providers among populations that are disproportionately affected by such disease.
Not later than 18 months after the date of the enactment of this Act, the Secretary shall submit to the Congress a report on the results of the study under subsection (a), together with such recommendations as the Secretary determines to be appropriate. In conducting the study under subsection
(a)and developing the report required by paragraph (1), the Secretary shall consult with relevant stakeholders, including health care providers, medical professional societies, State-based societies, public health experts, health educators, health professional organizations, drug and device manufacturers, patient organizations, pharmacists, payors, State and local public health departments, State medical boards, and other entities with experience in health care, public health, nephrology, and rare disease, as appropriate. In carrying out the activities under subsections
(a)and (b), the Secretary shall coordinate with the Director of NIH, the Administrator of the Center for Medicare & Medicaid Services, the Administrator of the Health Resources and Services Administration, and the Director of the Center for Medicare and Medicaid Innovation. To carry out this section, there is authorized to be appropriated $1,000,000 for each of fiscal years 2024 through 2028.
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Sec. 3
Understanding and Slowing the Progression of Rare Kidney Disease Through Early Intervention, Testing, and Treatment
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