Increasing kidney transplants in minority populations

(a) In general The Director of the National Institutes of Health shall expand, intensify, and support ongoing research and other activities with respect to kidney transplants in minority populations. (b) CMS data collection and reporting The Centers for Medicare & Medicaid Services shall collect and report annual data on dialysis facility and nephrologist performance on transplant referral, with an emphasis on data relating to patients of color. (c) OPTN data collection and reporting The Organ Procurement and Transplantation Network shall collect and the Scientific Registry of Transplant Recipients shall report annual data, broken down by demographic and socioeconomic characteristics, on individual transplant center performance as it relates to patients referred, evaluated, waitlisted, and successfully transplanted. (d) Transplant center data Each organ transplant center shall report on the percent of appropriate waitlisted patients (including socioeconomic and demographic data) giving and receiving annual informed consent for offers for suboptimal kidneys (such as kidneys with a kidney donor profile index of greater than 85 percent or kidney age 50 with diabetes, or age greater than 60). (e) Organ procurement organization data Each organ procurement organization shall report annual data on referrals, refusals (patient or doctor), and acceptance of organs by hospital, ZIP Code, race, ethnicity, and age strata except as prohibited by need for confidentiality. (f) Data transparency for patients Each organ transplant center shall provide to each patient of such center, on an annual basis— (1) the number of times an organ was offered to the patient, declined, and transplanted into another patient from organs within a 500-mile radius; and (2) the number of times an organ was offered to and declined for the patient from a low-risk donor which was subsequently transplanted into another patient. (g) Improved transplantation education The Centers for Medicare & Medicaid Services shall certify a nonbiased, third-party organization to accredit organ transplant education. (h) Research Research under subsection (a) shall include investigation into— (1) the causes of lower rates of kidney transplants in minority populations, including socioeconomic, geographic, clinical, environmental, genetic, and other factors that may contribute to lower rates of kidney transplants in minority populations; and (2) possible interventions to increase kidney transplants. (i) Report; comprehensive plan (1) In general The Secretary of Health and Human Services shall— (A) prepare and submit to the Congress, not later than 6 months after the date of enactment of this section, a report on Federal research and public health activities with respect to kidney transplants as a treatment for end-stage renal disease in minority populations; and (B) develop and submit to the Congress, not later than 1 year after the date of enactment of this section, an effective and comprehensive Federal plan (including all appropriate Federal health programs) to increase the number of kidney transplants in minority populations. (2) Contents The report under paragraph (1)(A) shall at a minimum address each of the following: (A) Research on kidney transplants in minority populations, including such research on financial, insurance coverage, genetic, behavioral, and environmental factors. (B) Surveillance and data collection on kidney transplants in minority populations, including with respect to— (i) efforts to increase kidney transplants among Asian-American, Native Hawaiian, and Pacific Islander subgroups with end-stage renal disease; and (ii) efforts to increase kidney transplants in the American Indian population. (C) Community-based efforts to increase kidney transplants targeting minority populations, including— (i) the evidence base for such increases; (ii) the cultural appropriateness of such increases; and (iii) efforts to educate the public on kidney transplants. (D) Education and training programs for health professionals (including community health workers) on the kidney transplants that are supported by the Health Resources and Services Administration, including such programs supported by the Bureau of Health Workforce, the Bureau of Primary Health Care, and the Health Systems Bureau.