University of Hawaiʻi student aims to expand bone marrow donor registry

Published on Sept. 18, 2015.

Despite the fact that someone is diagnosed with a blood cancer every three minutes, many people don’t think about this until it happens to them, according to UH Mānoa senior Lilian Li.

Many diseases can be treated with a bone marrow donation, and the Gift of Life Bone Marrow Foundation hopes to increase its registry to help find more matches for patients in need.

“It really isn’t a rare thing anymore,” Li said. “That is why we need to bring more awareness to the bone marrow registry because there are so many people in need of donors. At first, I did not even know what bone marrow was and now that I am more educated about it, it was a no brainer for me to register myself and raise awareness.”

Li, a marketing and international business major, got involved with Gift of Life after a benign tumor was discovered in her thryroid a few years ago. Now, she’s part of the organization’s Campus Ambassadors Program, and this Saturday she will join ambassadors in all 50 states in celebration of World Marrow Donor Day and hold a drive to encourage more college students to register as donors.

Celebrating donors

According to Alec Burkin, a project manager for Gift of Life, World Marrow Donor Day is in recognition of 25 million bone marrow donors registered worldwide.

“So this is really a celebratory day in which every registry in the world — which there are about 70 of them — are sort of doing their own scheme on honoring this day,” he said in a phone interview.

Li’s drive will be held in Kapolei, and though she is the only ambassador representing Hawai‘i, her goal is to register 50-100 new donors that day while also educating college students about her cause.

“I think a lot of us are not aware, like me, I didn’t know about it. And I feel like it’s definitely good to you know give back to the community,” she said.

To join the Gift of Life registry at Li’s drive, potential donors will swab their own cheeks with Q-tips provided by Gift of Life and will be required to fill out information such as their name, phone number and age. The entire process takes about 60 seconds, Li said.

About seven to 10 days later, Gift of Life will send an email asking for additional health history information.

The need for bone marrow

To join a registry, such as the Gift of Life’s — which is an associate donor registry of the National Marrow Donor Program (NMDP) that operates the Be the Match registry — potential donors have to be at least 18 years old. Once registered, donors will remain in the registry until their 61st birthday.

“The younger you sign up, the younger shelf life you have,” Burkin said. “If you’re signing up when you’re 50 years old, you only have 11 years of eligibility. However, if you sign up when you’re 20 years old, you have 41 years. So it’s important to get people into the registry as young as possible so that they could have the maximum potential of being a match.”

Gift of Life and Be the Match are members of the Bone Marrow Donors Worldwide (BMDW), which is the parent group of more than 70 registries around the world. According to Burkin, because all registries feed donors into this international registry, an individual only needs to swab his or her cheek once in his or her lifetime.

He added that because matches are found through genetic tissue type, there will only be a match for people with a similar genetic and ethnic background.

“Only a small percentage of donors, 1/1,000, are ever asked to donate, which is why it’s so important to grow the registry as large as possible,” he said.

Donors can donate more than once, though Burkin said it’s unlikely.

In the past, he has donated bone marrow and said it is a minimally invasive process.

A majority of donations are done through a blood stem cell procedure in which the individual is awake. Burkin said the process is similar to donating blood, platelets or plasma for an extended period of time.

“It’s a long boring day in the hospital but there’s really no pain involved whatsoever. And a lot of people are very taken aback when they hear that for the first time just becuase of the medical biases that are traditionally associated with this type of procedure,” he said.

Another way to donate bone marrow is through the traditional bone marrow harvest where the marrow is extracted from the lower hips in a surgical procedure. Individuals go under general anesthesia and can leave the hospital the same day.

Some diseases that are treatable by bone marrow transplants include leukemias, lymphomas, inherited immune diseases and diseases with poorly functioning blood cells.

Educating about donation

As part of Gift of Life’s second cohort of campus ambassadors, Li’s job is to run drives throughout campus and the community to register potential donors.

Over the course of a semester, she and the other ambassadors are required to hold three to five drives and recruit at least 500 people each. The program lasts for an academic year. Burkin said Gift of Life is looking to expand its registry by about 100,000 donors this academic year – as of Sept. 16, the registry had 242,409 registered donors and has found 12,274 matches.

This year, the program consists of 105 ambassadors from 102 universities and all 50 states, Burkin said.

According to Roy Yonashiro, senior community engagement representative for the Hawai‘i Bone Marrow Donor Registry — which is part of Be the Match — it is important that college students are educated about donation because they’re going to be setting examples for everyone.

“If they’re interested now and get involved and sign up, then you go out to the, I want to say, the real world, and they talk to others, they’ll spread the good word of what importance it is to be a donor,” he said in a phone interview.

He added that only a small population in Hawai‘i — the Hawai‘i Bone Marrow Donor Registry consists of about 80,000 donors — is registered as bone marrow donors.

“So we need to reach out. We need to reach out to people, and the most underrepresented are the ones that are not registered, the lowest numbers are Pacific Islanders like Hawaiians and Samoans and Tongans,” he said.

These groups are not finding matches because their people are not signing up, Yonashiro said, but this is because they’re not aware of the issue.

“And the only way to do that is to go out in the community and do drives and go out on television and radio and talk about it and get to them and explain why it’s needed,” he said.