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 Action
In September 2024, the U.S. House of Representatives passed the Charlotte Woodward Organ Transplant Discrimination Prevention Act. This legislation prohibits discrimination in organ transplantation against individuals with physical or intellectual disabilities. UNOS commends U.S. Reps. Kat Cammack and Debbie Dingell for their leadership and urges the U.S. Senate to quickly pass this legislation led by U.S. Sens. Marco Rubio and Maggie Hassan.
In February 2024, the Secretary of Health & Human Services issued a directive that authorizes the OPTN to collect pre-waitlist data. The transplant community has been requesting this authority since 2021.
The directive will require transplant centers to share information with the OPTN contractor when a patient is referred to them for an organ transplant. It’ll also require organ procurement organizations to provide the OPTN contractor with information on all ventilated patients referred to them from hospitals in their donation service area.
Access to this information will help increase equity in access to transplant. Additionally, access to baseline data on people most likely to qualify as organ donors can help better estimate donor potential and conversion.
UNOS, as the OPTN contractor, will continue working with the administration, Congress and the donation and transplant community to implement this directive and improve the system for patients in need of a lifesaving organ transplant.
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 transplantable 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 transplant community and the OPTN must provide the highest level of service to patients and the greatest level of transparency to the public who have charged them with this lifesaving work.
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3. Data collection