There’s a racial disparity among Michigan’s organ donors. Fixing it would save lives.

Aniyah Harris, 17, of Riverview, briskly paced in her fifth-hour biology classroom at Detroit’s Renaissance High School. Then, she closed her lips around a cocktail straw, and tried to breathe through the tiny tube.

It wasn’t easy.

“Would you want to breathe like that 24 hours a day, seven days a week?” asked Taneisha Carswell, community relations coordinator for Gift of Life Michigan’s Minority Organ Tissue Transplant Education Program.

Harris and the two other students with straws in their mouths shook their heads, no.

“A person waiting for a lifesaving lung transplant breathes like that 24 hours a day, seven days a week,” Carswell said during an interactive presentation about the need for organ and tissue donors, especially in diverse communities, on a snowy late January day.

By going from classroom to classroom, talking to students across the region, Carswell is hopeful she’ll chip away at some of the racial disparities and myths about organ and tissue donation.

Racial disparities high in organ donation

The need in the Black community is especially high.

Black Michiganders accounted for 30.2% of residents on the state’s waiting list for an organ transplant as of Feb. 7, even though they make up just 14.1% of the Michigan population, according to the the Organ Procurement Transplant Network. Of the 2,587 people in need of a lifesaving organ in Michigan, 781 are Black.

“African Americans … have increased risk for heart disease, high blood pressure and diabetes,” Carswell told about a dozen students in Emily Phillips’ international baccalaureate biology class. “I guarantee you everybody here knows somebody who either has high blood pressure or diabetes. Those are the two leading causes of kidney failure.

“African Americans are the top ethnicity/race that are waiting for kidney transplant, making up 60% of those waiting for lifesaving kidney transplant. And African Americans are more likely to find a genetically compatible match within their own race or ethnic group.”

Jelisa Bargainer, 17, of Detroit, looks through the Gift of Life brochure about organ donation as the organization's community relations coordinator Taneisha Carswell, 41, of Macomb, speaks to seniors in a biology class at Renaissance High School in Detroit on Tuesday, Jan. 30, 2024.

The reasons are complex, and swirled in with such social determinants of health as poverty, access to health care, transportation, housing and nutritious food along with a historic lack of trust in the health care system, said Remonia Chapman, who oversees the multicultural organ and tissue transplant program at Gift of Life Michigan, the state’s organ procurement organization.

“There are environmental factors that are impacting people’s health because of where they live, and many times people aren’t able to do something about that,” Chapman said. “I think there’s a combination of the social determinants of health, of environment, of access, of having food deserts, you name it.”

Carswell looked across the classroom and said her job is to open students’ minds, but not pressure them to become donors.

“One thing I do not do is ask them if they plan on joining the Michigan Organ Donor Registry,” Carswell said. “My main focus is to just allow them to be informed so when they are asked, they understand what they’re being asked to do.”

Recruiting new donors, one person at a time

The efforts are paying off, said Chapman said.

For years, Chapman has made it her mission to reduce the racial and ethnic inequities among donors and recipients. She oversees the work of Carswell and other regional education coordinators, who bring the message to classrooms and churches, barbershops and town halls — wherever people gather.

“They are ambassadors and advocates in their communities because they see these people every day,” Chapman said. “They’re not trying to reach the community, they live in the community. They’re part of the community. They’re able to pull organizations together that the community already trusts and marry our message with their message of health and wellness. It’s been tremendous work expanding our department and our footprint.”

Since 2016, the percentage of people from diverse backgrounds on the Michigan Organ Donor Registry rose from 23.9% to 49.5% by the end of 2023, according to Gift of Life Michigan.

And a record 578 people became organ donors last year, giving 1,372 lifesaving organs to people on the waiting list for a transplant. In addition, 1,858 Michiganders donated tissue.

The numbers have improved steadily each year since Dorrie Dils was named CEO of Gift of Life Michigan in 2016.

“It’s not something that gets turned around overnight,” she said. “And it’s very, very grassroots. There is no ad campaign that’s going to convince people. It’s talking to people like Remonia or Taneisha and getting their questions answered, hearing their stories. That happens one person at a time — in church basements, schools, at community events. Anywhere we can go where we can talk to people about organ and tissue donation, we attempt to be there.”

Gift of Life Michigan seeks an education mandate

Gift of Life Michigan’s leaders also are lobbying for legislation that would mandate all ninth graders enrolled in Michigan public schools get one hour of instruction about organ, eye, and tissue donation and the donor registry.

“Ohio, Indiana, Illinois and many other states require that,” said Patrick Wells-O’Brien, vice president of communications for Gift of Life Michigan. “Michigan does not. As a result, only 21% of new drivers register as organ donors. That abysmally low rate is not because Michigan teenagers are less generous. It is because of a lack of education.”

Students taking driver’s education classes in Michigan spend only about 10 minutes learning about organ and tissue donation. Worse, a procedural change with the Michigan Secretary of State means teens are asked whether they’d like to join the donor registry before they get any education about organ donation at all, Wells-O’Brian said.

Gift of Life Community Relations Coordinator Taneisha Carswell, 41, of Macomb, left, looks on as Jelisa Barginere, 17, a senior at Renaissance High School in Detroit, takes a look at a preserved set of lungs and heart on Tuesday, Jan. 30, 2024 during her biology class. The class was being taught the importance and impact of organ donations.

“Additional legislation is required to correct that,” he said. “Michigan is at a policy disadvantage.”

State Rep. Felicia Brabec, D-Pittsfield Township, introduced House Bill 5174 in October to require an hourlong in-school instruction for high school freshmen statewide. The legislation was referred to the House Committee on Education, where it remains.

Without a mandate, Gift of Life Michigan has been limited in how effectively it can reach students, Wells-O’Brien said.

“Out of 1,800 high schools in our state, we got into 362,” Wells-O’Brien said. “We need legislation to get an education program like ours into all high schools.”

The lack of an education requirement is especially inequitable in the city of Detroit, Wells-O’Brien said, where the population is majority Black and the cost of auto insurance is so high that many teenagers don’t take driver’s ed classes because they can’t afford insurance. That means Detroit teens are more likely to miss out on the 10 minutes of instruction other Michigan teens get through driver’s ed classes.

Dils said requiring education could make all the difference.

“We think we can get to the point where no one has to die waiting for a lifesaving organ,” she said. “But it means more people saying yes, putting the heart on their driver’s license. It means us educating more young people before they get asked that question to keep those numbers growing.”

‘Helping others is my passion’

At Renaissance, Carswell put images on a big screen at the front of the room — a heart, then kidneys. Next came lungs and a liver, followed by a pancreas.

She explained that donor organs are placed by the United Network for Organ Sharing, also known as UNOS, which gives priority to people who have the most severe disease, dividing them up by blood type, antigens, geography and wait time to make the best match.

Body size matters, too.

“Can Shaquille O’Neal donate to Kevin Hart? No, he can’t, and that’s because of the size difference,” Carswell said.

Then she showed the faces of kids whose lives were saved by donors.

There was a boy named Mohamed, who got a heart transplant at 16.

There’s the face of a girl named Dayja, who got a kidney transplant at age 16.

Students saw a girl named Kyle, whose first heart transplant at age 2 gave her 17 more years of life. She died at 19 while waiting for a second heart transplant.

“With pediatric patients, when they get a transplant at a young age we sometimes see that by the time they become middle-aged, they need a second heart transplant,” Carswell said. “But what we also know is that the additional time that a person gets with their family is priceless, because without this transplant, they wouldn’t have had that additional time at all.”

And then there’s a photo of a young woman named Taneisha.

“Who’s that?” she asked the class. “That’s right. It’s me.”

Gift of Life Community Relations Coordinator Taneisha Carswell, 41, of Macomb, right, has a group of seniors in a biology class at Renaissance High School in Detroit try on glasses to replicate what a person who need a cornea transplant might see on Tuesday, Jan. 30, 2024.

Carswell got a lifesaving kidney 16 years ago. She talked about the “sweet 16” celebration she and her donor have planned for later this week.

“What could be sweeter than a cake-decorating party for your sweet 16?” she asked.

Harris was moved to join the registry the first time she heard Carswell speak at Renaissance a year ago.

“It was a big part of the decision, learning about it,” said Harris, who works as a certified nursing assistant and hopes to one day become a surgeon. “Helping others is my passion, so why not?”

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