There are more than 100,000 patients on the national organ transplant list, with 1,450 people in the state of Wisconsin also on the list, according to Wisconsin Watch. But, as the number of people in need of organ transplants continues to grow, numbers show that there have been large spikes in removals from donor registries across the country, according to UCHealth.
Though surveys show that 90% of adults in the U.S. support organ donation, only 170 million people are registered donors, or 60% of the eligible population, according to the Donor Alliance.
There has been a 350% increase in individuals taking themselves off the Wisconsin donor registry, according to Wisconsin Watch.
Adults may sign up to register as an organ donor at the local Department of Motor Vehicles, online registries or state-specific registries, according to the Health Resources & Services Administration.
Public health organizations and community health outreach programs have focused on increasing awareness and encouraging registration, according to surgeon and Medical Director of University of Wisconsin Organ and Tissue Donation Dr. Nikole Neidlinger.
“We have a great community outreach team that works for us at the Organ Procurement organization,” Neidlinger said. “They train communities about the reason people should consider being an organ donor.”
Though these programs are in place, questions and concerns regarding organ donation are still highly prevalent, stemming from a lack of public trust, according to Wisconsin Watch.
Media coverage of organ donation in both television and traditional media containing potentially inaccurate information is one of the largest drivers of diminishing public trust, according to Neidlinger.
“The way it [organ donation] gets portrayed in the media, on shows like “The Pitt” or other ER shows, is different from how it [organ donation] is in real life,” Neidlinger said.
Along with television, articles published in papers like The New York Times have also contributed to the negative image being portrayed about organ donation, according to Neidlinger.
These negative instances of organ donation have also fueled growing misconceptions about doctors’ attitudes toward organ donation, according to Wisconsin Watch.
People who sign up as organ donors may believe that being a registered organ donor would mean their life won’t be saved, as doctors would choose organ donation over the patient’s life, according to Neidlinger.
Political polarization has also played a significant role in the overall loss of public trust in organ donation, especially due to the effects of the COVID-19 pandemic health policies, according to Neidlinger.
“COVID-19 illustrated whether people feel like they should change or make decisions for the greater good of humanity’s health,” Neidlinger said.
Issues such as mask mandates and the growing divisiveness of bodily autonomy, in combination with media coverage of unique organ donation cases, have deepened divides surrounding divides, according to Neidlinger.
Along with the impacts of the COVID-19 pandemic, the polarization of society and social media use have increased the spread of misinformation and disinformation, according to surgeon and Surgical Director of the UW Health Living Kidney Donation Program Dr. Joshua Mezrich.
“The algorithms want to increase stories that people are going to click on, and it certainly can lead to increased misinformation or polarization,” Mezrich said.
Social media may also be used as a positive tool to highlight stories and narratives of organ donors and recipients, according to Mezrich.
In Mezrich’s book, titled “When Death Becomes Life,” providing the alternate perspective to organ donation about the lives being saved and the connections formed between donor families and donor recipients can greatly improve organ donation views and therefore registration rates.
In response to media outreach and community education efforts, increased government interest in organ donation has prompted structural changes to organ donation registration and donation overall, according to Mezrich.
“In response to these articles that have come out, there is now a real effort to reconstruct how we regulate and monitor organ donation, and I’m not inherently opposed to that,” Mezrich said.
Transparency and accountability are among the ways the lack of public trust could be addressed, according to Mezrich.
Talks of organ donation in settings such as high school Driver’s Education courses, primary care, end of life planning and in religious or sports communities can support organ donation registration rates, according to both Neidlinger and Mezrich.
As organ donation continues to grow, challenges related to trust remain, according to Mezrich.
“Holding this narrative that is really true, that it’s just such a beautiful world to be a part of,” Mezrich said. “I really do see so much beauty in transplant, along with the people involved and the donors are amazing, that’s my message.”
