Actions to strengthen the U.S. organ donation and transplant system
Equity: Improve equity in access to the transplant healthcare system
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The OPTN is currently charged with developing and maintaining equitable organ allocation policies that apply to waitlisted patients, but true access to transplant — not just the waiting list — cannot be measured without understanding the national disease burden. We must take action to seek broader equity in access to transplant health care. The OPTN has been able to continually monitor and adjust organ allocation policies to improve equity in access among these waitlisted patients. The OPTN maintains an Equity in Access Dashboard to enable public research and review of these ongoing efforts, and publishes organ allocation policy monitoring reports for the public, which include data on key equity indicators.1,2,3
UNOS will undertake/propose the following action
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Seek authorization for the OPTN to collect data to identify barriers to equitable access to the waiting list and quantify the national disease burden. While the increases in transplant rates for minority patients are important, more data collection on patients before they are added to the waiting list is needed to eliminate inequities in access to the transplant waiting list.4,5,6,7
Data to be collected include characteristics of patients with end‐stage organ failure and those subsequently referred to transplant hospitals, including elements such as clinical characteristics, socio‐economic information, and patient demographics (age, race, address, etc.). This kind of data could assist in improving policy to increase equity for the broader end stage organ failure population.
UNOS published the Action Agenda on Jan. 30, 2023, to reflect the needs of the broader donation and transplant community. As we progress on the actions and recommendations outlined, we will post updates here accordingly.
Footnotes
1 “OPTN Equity in Access dashboard.” https://optn.transplant.hrsa.gov/data/visual-dashboards/equity-in-access/.
2 “OPTN resource pages by organ.” https://optn.transplant.hrsa.gov/professionals/by-organ/.
3 “One year monitoring report shows increase in kidney transplant following policy changes.” https://optn.transplant.hrsa.gov/news/one‐year‐monitoring‐report‐shows‐increase‐in‐kidney‐transplants‐following‐policy‐changes/.
4 Ashby, V. B., J. D. Kalbfleisch, R. A. Wolfe, M. J. Lin, F. K. Port, and A. B. Leichtman. “Geographic Variability in Access to Primary Kidney Transplantation in the United States, 1996‐2005.” American Journal of Transplantation 7, no. s1 (2007): 1412–23. https://doi.org/10.1111/j.1600-6143.2007.01785.x.
5 King, Kristen L., Syed Ali Husain, Zhezhen Jin, Corey Brennan, and Sumit Mohan. “Trends in Disparities in Preemptive Kidney Transplantation in the United States.” Clinical Journal of the American Society of Nephrology 14, no. 10 (2019): 1500–1511. https://doi.org/10.2215/cjn.03140319.
6 Sehgal, Ashwini R. “Should Transplant Referral Be a Clinical Performance Measure?” Journal of the American Society of Nephrology 28, no. 3 (2016): 721–23. https://doi.org/10.1681/asn.2016111169.
7 Patzer, Rachel E., and Laura McPherson. “Variation in Kidney Transplant Referral: How Much More Evidence Do We Need To Justify Data Collection on Early Transplant Steps?” Journal of the American Society of Nephrology 30, no. 9 (2019): 1554–56. https://doi.org/10.1681/asn.2019070674.
All stakeholders, including UNOS, share a common mission:
Get as many usable transplant organs as possible to patients who need them, fairly, equitably and efficiently.
All parts of the national system must be held accountable for making sure that this happens. The OPTN contractor must provide the highest level of service to patients and the greatest level of transparency to the public who has charged it with this lifesaving work.
Up next:
3. Data collection