National Donate Life Month combats transplant-based medical mistrust

Every April, National Donate Life Month encourages people to sign up to become organ donors through activities and events that foster community engagement and education.

However, some believe a history of medical discrimination and inequity in the health care system has targeted underrepresented groups and continues to affect the donation process for both organ donors and recipients.

“There is a lot of medical distrust, and it's rightfully earned in a lot of cases,” Tiffianna Elmore, DMV and teen outreach program manager for Donate Life NC, said.

North Carolina has a population of about 10.6 million people, but only 5.6 million are registered to be donors, according to Elmore.

As of December 2022, the Organ Procurement & Transplantation Network approved a new policy that addresses racial biases in estimated glomerular filtration rate (eGFR) calculations—which gauge kidney function. Doctors use these calculations to assess how sick a kidney patient is. 

The policy requires hospitals to assess their transplant waiting lists and backdate waiting times for Black kidney transplant candidates who were disadvantaged by the use of race-inclusive eGFR calculations.

According to OPTN, the use of Black race variables in calculating eGFR values was found to overestimate a Black patient’s kidney function by as much as 16 percent.

Overestimating kidney function means that a patient could appear to be less quantitatively sick than in reality, which may influence placement on the transplant waiting list.

In June 2022, the OPTN board of directors voted unanimously to implement a race-neutral eGFR calculation. 

Pam Smith, the manager of multicultural initiatives for Donate Life NC, donated her kidney to her husband in 2013.

Smith said she presents facts and information to people about organ donation to help them make their own informed decisions.

Smith and her husband, Rev. Antonio Smith, co-founded the nonprofit Smith Bios Group, which encourages healthy lifestyles and organ donation registration.

Smith said they go to predominately Black churches to dispel myths, share their stories and encourage people to register as organ donors. 

“There's also that history, all of that history, where African Americans weren't treated properly,” she said. “And it's interesting that, even in 2023, that is still a concern for a lot of people and that's one of the first things people think about sometimes when we approach them.”

The American Board of Internal Medicine Foundation commissioned a NORC study that examined medical mistrust among socioeconomic demographics. The study found that physician distrust increased during the COVID-19 pandemic and is higher among Black and Hispanic patients.

The study also examined the drivers of distrust between doctors and patients. Many patients attributed their distrust to a lack of interaction with their doctors. However, many doctors attributed patients' perceived distrust to poor communication.

Daniela Matz is a transplant social worker at a UNC Health Latino Kidney Clinic. The clinic, which addresses shared cultural values, beliefs and misconceptions, has increased access to kidney transplants in the North Carolina Latino community.

“The Latino Clinic is not to segregate people,” Matz said. “It is just to be able to provide more culturally competent care and not only understanding the language and being able to communicate with our patients, but also understanding the culture.”

Cultural competence in health care works to address communication and language barriers. It also provides training to staff and recruiting employees from the community in an effort to improve health care access and increase patient satisfaction.

“I feel that the health care system could better serve everybody,” Matz said. “If everybody had access to preventative care, it would make a huge difference.”

This lack of access, even to be able to adhere to doctors’ recommendations, continues to hinder health care for underrepresented communities and trust in the patient-doctor relationship, according to NORC data. 

Matz said there are ways that the state is trying to close these barriers, but it takes a lot of effort and support from the system.

Editor's note: Daniela Matz said her views are her own as a social worker and not the views of UNC Health.

@OliviaGschwind

@DTHCityState | city@dailytarheel.com