Opinion: Black people can become organ donors, even if they don't trust the medical system

Part I covered what happens to an organ donor’s body after death and how it can save 300 or more lives. Part II shared Freddie Windsor's story.

Nationwide, more Black people need to register to become organ donors to increase the odds of Black people on the organ waiting list getting an organ.

“Unfortunately, here in Iowa we don't have statistics on who is registered by race,” said Heather Butterfield, director of strategic communications for Iowa Donor Network, an organ procurement organization. “That's not information that we receive, but we just know generally nationwide, while there's a greater need among people of color, they don't register at as high as a rate.”

Butterfield agreed that distrust of the medical system is one thing that stops Black Americans, like me, from becoming organ donors.

More: It's National Donate Life Month. But here's why I can't be an organ donor.

So, how do you reach the Black community and help build trust?

Personal donor stories help build trust

I didn't know anyone with a donor story, so Butterfield referred me to Cindy Windsor, a donor advocate who shared the story of her husband, Freddie, a Black man, who received a heart and a kidney transplant. Because of the donor's — Steve's — gift of life, not only was Freddie's life extended, but their son Zion was given the gift of getting to know his father.

More: Opinion: Freddie Windsor's story can inspire others to become organ donors

Freddie's story shows the difference that donors make. Deno McCreary, who detailed what happens to a donors body after death, also showed the difference donors make. Stories such as theirs can help build trust in the reasons why people should donate, but more is needed to convince those who distrust the medical system.

More: Part I: One donor body can save hundreds of lives (with the help of an organ harvester)

People the same race as potential donors can help build trust

Nicole Oates, an organ utilization specialist team lead at Iowa Donor Network, as well as in Houston, is passionate about organ donation, since it has been a part of her life since she was 8, helping her grandmother with her grandfather’s peritoneal dialysis at home. She was moved by being able to see organ donation from different sides. “From a person who died waiting (grandfather), a person who actually received an organ (college roommate) and then, you know, getting the story from a donor family (sister-in-law).”

This made such an impact that Oates got her master's degree in human donation science. “I went specifically to become a coordinator and be able to help families that looked like us, in their greatest time of need.” For about 12 years, Oates has been traveling around the country doing this — one of the few Black Americans in the field.

She and others feel it is important for Black people (and other people of color) to get their concerns addressed by people who look like them.

Since she seemed to understand my fears, she seemed like an ideal person to answer my questions.

How do you know I’m really brain dead?

Oates admits that this is a hard concept for many to grasp: “When the brain is dead but the body still looks the same and they're still breathing on these machines and you can still feel that they're warm, it's not the form of death that anybody is really used to seeing.”

Doctors perform a myriad of tests to certify brain death. They include cognitive tests. Then, conditions that could result in low cognitive scores, high acidity, and other results that could mimic brain death are ruled out. Brainstem nerves and reflexes are also tested and actions are taken to get you to breathe. “If the CO2 in your body gets to a certain level,” said Oates, “every living thing is going to take a breath. There’s no way that you can survive high levels of CO2 in your body.”

These test results — and more — are shared with the family along with a test that Deno McCreary mentioned in Part I that provides the family with a visual representation of brain death. “It's called a nuclear medicine test. They put in this type of dye that shows brain activity,” said Oates. “In a regular brain, activity is lit up like a light bulb. A person who is brain dead shows no blood flow to the brain at all. It is like a light bulb that has then been turned off.” With no blood flow going to the brain, the person is truly gone.

How do I know I won’t be left to die if someone needs my organs?

Oates stressed that emergency medical staff are working to save lives. They’re not going to stop and check to see if someone's a donor. Plus, if it’s not noted on your driver’s license, they wouldn’t even know. “We are the only people as the OPO that can access that registry status and actually know if a person is a donor or not," said Oates. “And we are involved very, very late in the process.”

The OPO is called in when all tests have been done and nothing else can be done to save a patient’s life; and the patient is brain dead or has experienced circulatory death (a non-survivable injury and is on life support systems). End of life wishes are discussed and the family completes a questionnaire that is used to determine donor’s suitability.

Why does race matter in matching donors with recipients?

Oates stated that people are not matched by race. They are matched by six different antigens, for example. The more antigens that match in both people, the less likely the recipient’s body will reject the organ, the less immunosuppressants the recipient will have to take, the likelihood the recipient will live longer is increased, and the likelihood of the recipient returning to the waiting list for a new organ is decreased. “We call it a zero-antigen mismatch,” said Oates. “That's like you giving a kidney to yourself. This person matches. They're like your genetic twin.”

So, did this instill trust and make me ready to be an organ donor?

It helped. But I am not convinced that medical professionals can't circumvent the precautions or that I won’t get a doctor who won’t be motivated to aggressively save my life. But odds are, not getting the best care won’t have anything to do with my being an organ donor. If I have a doctor that's not motivated to save my life, I'm betting it'll have nothing to do with my organs.

So, registering to be a donor means getting to a point where the pros outweigh the cons. Like the COVID vaccines, where a part of me wondered if because I was Black, there was a “special” dose of the vaccine for me, but my fear of getting COVID was greater than my fear of the vaccine, so I got vaccinated. With becoming an organ donor, after hearing stories like Freddie’s, knowing of the great need, and seeing, after talking to former organ harvester Deno McCreary, all the lives I could help, the benefits of being a donor are starting to outweigh my fears.

To register to be a donor or change your donor status, visit Iowa Donor Network. You can also register when getting a license or ID at the DMV.

Rachelle Chase is an opinion columnist at the Des Moines Register. Follow her at Facebook.com/rachelle.chase.author or on Twitter @Rachelle_Chase.

This article originally appeared on Des Moines Register: Opinion: Want to increase Black organ donors? Restore trust.