Written by Youstina Swaha
Edited by Joey Huang
The process to become an organ donor is very simple; while registering for or renewing a state ID at your local DMV, when prompted, check yes for becoming an organ donor. It’s a tiny part of the process that has long-term effects. According to the NYS Life registry, you can join the registry at 16 years of age, but before turning 18, the final say on the organ donation will still fall on your parents or legal guardian. In New York State, you can also join the registry here.
We have all heard about organ donation from medical TV dramas to getting our driver’s licenses, but what is the actual process like, and what are some true and untrue myths surrounding it? Overall, organ donation is a beneficial act for those who have certain medical conditions or have suffered severe accidents, but what happens when minority patients are unable to benefit from this system?
While the process of becoming an organ donor may be easy, minority groups often suffer due to the current Organ Procurement Organizations (OPO) system. According to the research project called “The Costly Effects of an Outdated Organ Donation System,” People of Color do not always receive crucial organ transplants due to outdated practices in the system. When specifically looking at the kidney transplant process, the diagnostic standards to place higher on the waitlist and thus be more likely to receive a transplant “[stem] from 20-year-old flawed data that presumes black people have higher muscle mass,” creating a systematic disadvantage towards People of Color (Inequality in Organ Donation 10). The process to be added to the kidney transplant waitlist relies on the estimated glomerular filtration rate (eGFR), which is a calculation that factors in muscle mass and estimates “how well your kidneys are filtering certain agents produced by your body” (National Kidney Foundation). With the assumption of higher muscle mass in Black patients, their scores (stemming from the eGFR) are thus skewed to appear more normal and in turn delay treatment and transplant.
Even if the patient of color’s turn has come, the available organs that are compatible are very limited, due to the insufficient procurement of organs from individuals of similar ethnic backgrounds. The importance of procuring lies in the need for genetic and tissue type similarities, which often occur between people of the same ethnicity (Inequality in Organ Donation 14). The same research project mentioned previously also relates that “this is partly due to the poor OPO and hospital relationships and even guidance by OPOs to not call … when the OPO believes donation is unlikely” (Inequality in Organ Donation 19). Even if a person of color agrees to have their organs donated, the OPO “has discretion to decide whether or not to follow up” (Inequality in Organ Donation 21). When they do follow up, the OPO falls through with a lack of adequate information and time to decide whether organ donation is a viable and religiously allowed option for the donor’s family to take. While it seems laughable that an Organ Procurement Organisation picks and chooses which organs are procured or not, this is not the only problem with the system. This ability to pick and choose these donors leads to a problem of OPOs not following up on “bad cases” (a case where a donor is not followed up with an OPO based on race and other factors that make a donation less likely). In combination with being allowed to self-report data, this allows for the OPO to report “good numbers” to the regulatory body known as the Centers for Medicare & Medicaid (CMS), which provides them with reimbursements for their work. This inflates the amount of good the OPOs are doing and allows them to fly under the radar without making progress toward decreasing the transplant waitlists. In the “The Costly Effects of an Outdated Organ Donation System” study, it was found that OPOs were only recovering “one-fifth of the true [donor] potential,” with only 40,397 donations occurring out of 1.07 million referrals (Inequality in Organ Donation - OPO Best Practices 31). This just goes to show that despite there being overall a million referrals, people are not getting the organs they need because of the system the OPOs still use. In the long run, this problem is especially harmful to People of Color, as they get the least number of organ transplants. The effect is doubly concerning when taking into account the donor data from UNOS (United Network for Organ Sharing), which notes 23,289 cumulative donors recovered (organs recovered from both living and dead donors) in 2023. While it seems much less than OPOs’ contributions, this statistic does not take into account that UNOS reports only 19.42% in Organ Discard rate in 2023 when looking at the national data for all organs (OPTN Metrics).
Thankfully, some steps to combat the disparities have been taken by CMS to reform the way OPOs think about the organ donation process. More specifically, there has been reform to the way organ transplantation rates are measured, with a new focus on the number of people actually receiving transplants, rather than the number of eligible candidates (CMS 2). This holds OPOs accountable to follow through with all available donors, no matter what. Additionally, all performance statistics (donation and transplantation rates) will be made public to hold OPOs accountable for saving more lives (CMS 8).
A common misconception is that your organ donor status is known by all medical professionals taking care of your body during an emergency, but that is untrue. According to the NYS Life Registry and Mayo Clinic, information about organ donor status is not available until a patient is declared dead. This also means that all medical professionals work their hardest to provide all the possible life-saving treatments they can (Mayo Clinic 6). According to the Mayo Clinic, there are so many tests also conducted to ensure the status of an organ-donating patient.
All in all, organ donation serves as a beacon of hope to an innumerable number of patients whose lives these organs depend on. As such, it’s even more crucial to recognize and address the systematic disparities that hinder the unbiased collection and distribution of organs, especially in minority groups. To help combat the lack of POC organ availability in the system, consider registering to become an organ donor and talk to others about the possibility of registering as organ donors. For more information, visit the NYS guidelines and religious standings on organ donation.
References:
Awan, Omer. “Disparities of Organ Donations in America and How to Rectify Them.” Forbes, Forbes Magazine, 23 Feb. 2023, www.forbes.com/sites/omerawan/2023/02/22/disparities-of-organ-donations-in-america-and-how-to-rectify-them/?sh=2d83f7e74692.
“Estimated Glomerular Filtration Rate (Egfr).” National Kidney Foundation, 6 Mar. 2024, www.kidney.org/atoz/content/gfr.
“Inequity in Organ Donation.” Inequity in Organ Donation · The Costly Effects of an Outdated Organ Donation System, Aug. 2023, costlyeffects.organdonationreform.org/Inequity/.
“National OPTN Data.” OPTN Metrics, insights.unos.org/OPTN-metrics/. Accessed 30 Mar. 2024.
“Organ Donation: Don’t Let These Myths Confuse You.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 4 May 2023, www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/organ-donation/art-20047529.
“Organ Donation & Transplantation.” Cleveland Clinic, 11 Oct. 2023, my.clevelandclinic.org/health/treatments/11750-organ-donation-and-transplantation.
“Press Releases CMS Finalizes Policy That Will Increase the Number of Available Lifesavings Organs by Holding Organ Procurement Organizations Accountable through Transparency and Competition.” CMS.Gov Centers for Medicare & Medicaid Services, 20 Nov. 2020, www.cms.gov/newsroom/press-releases/cms-finalizes-policy-will-increase-number-available-lifesavings-organs-holding-organ-procurement.
“The Organ Transplant Process.” The Organ Transplant Process, Apr. 2021, www.organdonor.gov/learn/process/transplant-process.
Seo, Hannah. “Organ Donation in the US Is Broken, and We Know Who Is to Blame.” Scienceline, 14 Jan. 2020, scienceline.org/2020/01/organ-donation-in-the-us-is-broken-and-we-know-who-is-to-blame.
“What Actually Happens to Your Body When You Donate Your Organs?” YouTube, 15 Feb. 2017, www.youtube.com/watch?v=W_lEJsNcnWA&t=7s.
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