The Next 400: Recruiting more African Americans to become organ donors
Candice Monroe knows first-hand, from different perspectives, the power of organ transplants.
CLEVELAND, Ohio (WOIO) - We’re surrounded by death everyday. But if you had the power to save a life, with a simple sign up, would you do it?
The word’s “second chance” really mean something to Candice Monroe. Next month marks the 19th anniversary of her receiving a heart transplant. In 2002, at the age of 15, she was diagnosed with dilated cardiomyopathy.
“Right there they said, ‘You have an enlarged heart,’” Monroe recalled. “You always think at 15 you have so much more life to live, and you don’t realize that in a matter of a movement it could be taken.”
She was placed on the national transplant waiting list. About two weeks later good news was delivered.
Monroe would be receiving a heart.
“Do you ever sit there sometimes and say, ‘Whoa, I received somebody’s heart that’s literally in my chest?’” asked reporter Damon Maloney.
“It’s hard to even put into words. I’m lucky enough to have such a great relationship with my donor’s father,” Monroe said. “I met him in 2014. I think about him often. And I think about how he lost someone, his daughter, but he was able to say “yes” and give that life on to someone else. It’s almost like I have to stay strong and keep myself healthy and ensure that this beautiful gift keeps going for him.”
The saving grace Monroe got unfortunately isn’t the outcome for too many Ohioans and Americans because there’s not enough people registered as organ donors.
“It really truly is a crisis- that no one should ultimately die waiting for organ transplant,” said Gordon Bowen, CEO of Lifebanc, headquartered in Warrensville Heights. “There should be enough organs out there. We should do everything we can to help people of color and anyone that’s currently waiting here. Not only in Northeast Ohio, but in the United States.”
Bowen said everyday 22 people in the U.S. die because an organ is not available. A deceased organ donor can save up to eight lives. Bowen said work never stops to try and get more people to sign up to be a “hero”.
Although people of different races can be a organ match certain ones, for instance kidneys, rely on compatible blood types and tissue markers that are more likely to be found among members of the same ethnicity. Proponents like to say more diversity in the donor pool helps everyone.
Lifebanc said in Northeast Ohio about 1,700 people are waiting for an organ. Africans Americans make up 30-percent of that total. But Bowen points out that less than 30-percent of Americans are listed on the donor registry compared to the state average of about 59%. A deeper dive shows the actual number of African American donors, people who’ve died and given an organ, averages about 17-percent.
The bottom-line is African Americans are already prone to more health disparities including kidney disease, diabetes and high blood pressure. Paired with the current donor situation it means more people of color will be on waiting lists longer and have a greater chance of dying.
Monroe knows first-hand the seriousness of all the realities. In 1993, years before she was diagnosed with dilated cardiomyopathy, her older sister was diagnosed with the same disease.
Monroe’s sister was on the national transplant waiting list for about two-weeks before receiving a transplant.
“She had a beautiful life. She had a daughter in 2007, and then she did need a second transplant in 2012. She passed away in 2016. I continue to say we got 23 beautiful years with her because of organ donations. And you know, we have my beautiful niece to show for that.
Monroe’s father also suffered from the same heart condition.
“Sadly, I lost my father just a month and a half ago. He waited for two years without receiving a transplant,” Monroe said. “It helps me truly understand the need for organ, eye and tissue donation.”
Bowen and others said increasing donor registrations requires ongoing education and partnerships to combat misconceptions. Educators say systemic racism and disparities in the health industry have had a negative impact when it comes to getting people to sign up to be a donor.
“We need to get the word out. We need to do more strategic planning (and) more strategic education so we are not fearful,” said Linda Kimball, executive director of the Cleveland Minority Organ and Tissue Transplant Education Program (MOTTEP).
“Often times I’ll go out in the community and they’ll tell me, ‘It’s against my religion to be an organ donor,’” Kimball said. “99% of religions feel that it’s an act of love to be an organ donor.”
Another misconception: If an organ donor is involved in a critical accident, doctors won’t save their life.
“Lifebanc... we’re not even involved in the donation process until everything has been done at that hospital by those physicians and nurses to save the life of that loved one,” Bowen said.
Bowen said Lifebanc prides itself on having a diverse board that can reach audience in unique ways.
Some initiates Lifebanc has worked on includes getting lessons on organ donation state mandated for high school students and launching a campaign to help African Americans and others get state identification cards. Bowen said many people think a driver’s license is requited to register as a donor, when a state ID give people the same ability to register.
Cleveland MOTTEP has a number of initiatives to help young people and adults be proactive about their health. Kimball said better decision making, on things people can control, saves lives.
Monroe has volunteered for Lifebanc ever since her transplant.
“I know how important it is. I’m a woman of color,” Monroe said. “I am a living testimony of how it works. You don’t realize it... that it could be you waiting in that hospital for that transplant.”
She said her faith and family have helped her navigate all the ups and downs she’s experienced.
“Every year on February 7th I celebrate heart day. They’ve (family, friends and co-workers) grasped the day, and they make it a celebration.”
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