Grand Forks man donates bone marrow to save a life, advocates for national policy to remove barriers to donation
Marrow donation is usually the last option for patients battling blood cancer
GRAND FORKS – When Cole Reimann saw a local TV news story a few years ago about a young girl who was ill and desperately needed a bone marrow transplant to live, he knew what he had to do.
“She was out of options,” recalled Reimann, of Grand Forks. This was her last chance for survival.
The news story “encouraged members of the community to join the registry,” he said. “I filled out the information later that day and put it in the back of my mind at that point.”
He joined the National Marrow Donor Program/Be The Match registry in November 2017, making himself available along with others who have stepped up to offer hope to people struggling with life-threatening blood cancers, such as leukemia and lymphoma.
He received a swab kit in the mail, took a sample from his inner cheek and returned it in a pre-paid envelope.
In June 2019, he received an email and then a phone call from a coordinator with the registry headquarters in Minneapolis.
“I forgot I’d signed up for it,” he said. “They said, ‘We think you might be a match. Are you interested? Are you willing to move forward?’ ”
As a new parent himself, the desire to help was even stronger, he said. “I remember instantly thinking of the little girl from the news story and my own son upstairs and couldn’t imagine saying no to being someone’s only chance.”
The registry coordinator’s questions were ones he would hear repeatedly over time, because it’s so crucial that the donor remain committed to the process and not back out, especially as the donation date nears, he said.
Bone marrow donation is a complex process and there is so much at stake, Reimann said.
The little girl he saw in the news story was 2 or 3 years old, he said. “She needed a second chance; she was out of options. They couldn’t find a match. (Patients in need of transplant) are almost always out of options.”
Finding a suitable match for donation is a daunting task, he said. “There’s a less than 25% chance that someone in the family would match.”
The registry coordinator arranged for an interview with Reimann and his wife, Tricia. He went to medical appointments for blood testing at Altru Clinic.
The donation took place July 30, 2019, at a University of Wisconsin hospital in Madison. The procedure took about two hours, as the medical staff used a hollow needle to extract marrow from a bone in his hip, “one teaspoon at a time,” he said.
For the recipient, preparing for transplant is much more complex and takes more time, Reimann said. The recipient undergoes a type of radiation to eradicate their bone marrow in order to absorb the donor marrow, and “that becomes his starting point.”
The radiation compromises the immune system, leaving them vulnerable to disease – another reason the donor’s commitment is so important.
Reimann knows very little about the person who received his marrow donation – only that he was a 17-year-old who was about to begin his senior year in high school and was battling ALL, acute lymphoblastic leukemia.
For one year after the transplant, there is no contact between donor and recipient. But after that, if both parties want to connect, that can be facilitated, he said.
Becoming an advocate
Through the registry, Reimann has since joined an advocacy group that is lobbying for donor leave legislation to ensure that individuals’ jobs are protected if they choose to become marrow donors.
Luckily, Reimann’s and his wife’s employers were supportive of his plans to donate.
“My employer supported me and allowed me to take time off work to help save a life,” Reimann said. “This is not always the case, and it’s time to change that.”
Reimann regularly makes phone calls to Sens. John Hoeven and Kevin Cramer, both R-N.D., and speaks with their staff members, he said. They have been “phenomenal to work with,” and he’s confident they are aware of the cause and the importance of donor leave policy.
Reimann and other advocates hope Congress will file legislation to create a national donor leave policy that would allow people, in any U.S. state, to take off up to 40 non-consecutive hours of leave to donate.
“There is no fiscal impact or funding requirement,” NMDP/Be The Match Chief Policy Officer Brian Lindberg said in a news release. “We are simply asking employers to give a person time off, just 40 hours, so they can save a life.”
This legislation would not cost the federal government or employers, Lindberg said. It would not require employees to take their established paid time off or sick leave, and it would not require employers to pay for leave to donate. It would ensure the donor’s job would be protected while involved in the donation process.
The legislation would help close the donor gap for under-represented populations in the registry, including ethnic and racial minorities and rural residents. The likelihood that a patient has a fully-matched donor on the registry varies from 79% for white patients to just 20% for Black patients. Other ethnic groups don’t have equal access to this type of donation, Lindberg said. That’s why the organization is working to diversify the donor registry.
About 70% of people do not have a fully-matched donor in their own family. These patients turn to NMDP/Be The Match for a second chance at life, the organization says. If donors come from a state without protected leave from work, they might not donate.
“We are only asking for 40 hours off. Forty hours to save someone’s child or loved one,” Reimann said.
He is also emphasizing the need for funding to support typing and testing of HLA markers, which determine match criteria, in North Dakota, so donors don’t have to travel long distances.
And he is hoping to remove the stigma associated with bone marrow donation. People tend to think it is very painful, he said, but he was “out of it” during the procedure. Afterward, he recalled being “really sore and stiff,” but he could move around and walk.
All the donor’s expenses are covered, including travel, meals and hotel accommodations, he said.
‘Something I had to do’
Potential donors back out of donating for a variety of reasons, he said. Some choose not to donate because they don’t have enough vacation time built up.
“We want to remove any barriers for donors to make those donations, because for the recipient, their lives are hanging in the balance.”
Reimann is hopeful that shedding light on this registry encourages others to consider donating.
In all of this, Reimann cannot help but think of his family – he and Tricia have two sons, Christian, 4, and Elliot, who turns 2 this month – and what they’d do if they faced this health crisis.
Looking back at the transplant donation, he said, “It’s something I had to do.”
In the aftermath, he said, “I was proud. It’s something I hope others would do for me or my kids if they needed it.”