Yun K. Lee, an optimistic, caring and unselfish husband was diagnosed in 2019 with an extremely rare blood cancer called histiocytic sarcoma.
Lee recalls what went through his mind when he was first told he had cancer.
“When you hear 'rare cancer' and 'there's no real game plan' – that just kind of threw me into a state of shock where I guess all I could think about was what is my wife going to do? What's going to happen with everything that we've ever planned for? Dreamed about?”
Lee and his wife Jumee Lee at a New Jersey Be The Match donor drive in late August.
His best chance to survive would be to find a donor in the bone marrow transplant registry that matched his HLA blood type.
After over a year of countless efforts to get people into the registry: donor drives, fundraisers, social media campaigns and flyers – Lee is still without a match.
And it’s likely because he is Korean.
“When we [initially] found out that when they checked the database and there wasn't a match, I was even more disappointed and very terrified,” Jumee Lee, Lee’s wife, said.
This is the story of many blood cancer patients of color across the nation. Almost three-fourths of blood cancer patients need a bone marrow match from a stranger that is willing and able to donate their bone marrow, according to Be The Match, the non-profit organization that runs one of the largest bone marrow match registries in the world.
And your odds of finding a match entirely depend on the color of your skin.
White patients will find a donor 79% of the time, the best odds for a blood cancer patient to find a match, according to Dr. Ron Jacob, the east regional director of Be The Match. From there, the gap becomes exponentially worse:
“That's the gap that we're trying to fill,” Dr. Jacobs said, “And what I have to be frank about as well is that multirace patients we don't even have exact numbers for, but we do know they're the most difficult group to find a match for.”
For Lee, seeing the Asian American community so poorly represented in the registry is frustrating.
Blood or bone marrow transplants are replacing the cancer cells and marrow that was killed by chemotherapy and radiation with healthy blood stem cells, according to Be The Match.
To receive a transplant, the human leukocyte antigen, or HLA, has to completely or mostly match between the patient and donor.
When signing up for the registry, volunteers swab their cheeks for 20 seconds on each side. After the sample is sent to the labs, they swab for the HLA antigen. Some HLA markers are only seen within certain ethnic backgrounds, which is why people typically match with donors that share the same ethnicities.
“That's why ethnicity and ancestry play a huge role in this,” Dr. Jacob emphasized.
Dr. Ellsworth Grant, a blood cancer doctor at the Oncology Insititute of Hope and Innovation, has dealt with this disparity firsthand in his career. He has noticed that his patients of color are less likely to find a match compared to his white patients.
He said the reason for this disparity is twofold: there are not as many donors of color in the registry as there are white donors and the genetics of populations of color tend to be more diverse, making the search for an HLA match more difficult.
Because of how HLA matching works, the more homogenous a population is, meaning the population consists of a single race, the more likely a patient will find a bone marrow match with a random stranger. Dr. Grant believes this disparity will only grow as the multiracial population in the US rises.
“The registry really needs to be well-populated just because the odds of younger people of all races needing it are much greater now compared to the past,” Dr. Grant said, also mentioning that people are having fewer kids so the chances of finding a sibling match are much smaller than it used to be.
The gap has improved over the last few years due to their outreach, Dr. Jacob said. But he agrees with Dr. Grant that there needs to be more work on educating and engaging with communities of color. Particularly in Black communities, where 55% of Black Americans say they distrust the healthcare system because of a history of medical racism, according to a 2020 poll by the Kaiser Family Foundation.
Flyers of another blood cancer patient at a Be The Match donor drive in April at USC. (Alexis Gebhardt)
Dr. Grant also mentioned that he does not see as many fliers for donors within neighborhoods that have large populations of color as he does in predominately white neighborhoods.
“I think more time needs to be spent on the explanation end of it.” Dr. Grant said, stressing the importance specifically in the younger population, “the community at large in general doesn't really know anything about what a bone marrow transplant is and why you need to have your name in a registry.”
Lee can attest to this. He didn’t even know that the bone marrow registry existed prior to his diagnosis.
“I never knew that there was such a dire need and that so many people suffering from blood cancers, you know, that their only option to save their lives would be something like this.”
Dr. Grant suggests that the only way to really keep the word out is to continuously create PSA announcements on social media such as Twitter, Instagram, Snapchat and Tiktok, to really engage the community.
“Keeping the conversation going by having drives by kind of pushing drives. Just by talking and getting it out there,” Jumee Lee emphasized.
Engaging the younger population specifically is really important, Dr. Jacobs also stressed, because a donor between eighteen to twenty-five usually leads to less rejection less relapse and less medical deferrals.
That’s not to say that there are not other options available for patients of color who cannot find a match. Dr. Jacob mentioned that oftentimes when a diverse patient cannot find a near perfect match, their secondary or tertiary donor ends up being someone who is white. But the farther of a HLA match the donor is from a patient, the more risk there is for the transplant to fail and the cancer to relapse.
Many chemotherapies have advanced enough to get patients to a point near remission so they can hang on long enough to find a bone marrow transplant, as is in the case with Lee, who is not in remission but is currently in a safe place to wait for a match.
Lee said that while he waits for a match he tries to stay as optimistic and busy as possible, focusing on his wife, the small mom and pop deli they own in New Jersey, and their pets. But he said in the back of his mind he is always concerned that a bone marrow transplant might be his last option.
“I wouldn't want to wish this on my worst enemy, to have to wait for a match to possibly save your life, like, that's a horrible position to put a person in.”
Yun and Jumee Lee (on the left) standing in their deli shop with their nieces, nephews, sister and brothers.
The Donor Process
Almost 50% of donor matches say no to giving bone marrow, according to Dr. Jacob. He believes that part of this is the deep misconceptions and myths about bone marrow transplants.
What some people said when asked what a bone marrow transplant is:
“I haven’t heard bone marrow transplant in years but is that when they're like actually like sticking needles or something in to actually having to go inside of your bone to take out blood cells?”
— Oscar Paz, 31, California Resident
“I just know that it’s painful and its like a pretty complicated process and its not like a common thing to have but yeah not much information.”
— Jenny Yoon, a USC Senior Buisness major
“I don’t know what bone marrow is, I couldn’t tell you like why it works or why a transplant would work.”
— Emily Starr, a USC Sophomore Political Science and Spanish Major
Despite what some may think, Dr. Jacob said that a bone marrow transplant is not invasive at all and 85% of the time looks like giving blood, also known as a peripheral transplant.
The process of a typical bone marrow transplant:
- For five days, You take a medicine that increases the number of stem cells in your bloodstream.
- You go to a transplant center or hospital on the fifth day.
- Your arms are hooked up to a machine that collects only the cells that were formed from the medicine in one arm and the remaining blood is sent back into your other arm.
- The process starts and takes about 5 to 6 hours, patients often watch TV or shows on their phones.
Dr. Jacob said that the most common complaint after a peripheral transplant is that you are sore in the arms which goes away with a Tylenol within 24 hours.
The other 15% of the time they will do the stereotypical bone marrow transplant, according to Dr. Jacob, which includes retrieving the stem cells from the spongy between the bones at the back of your hip bone. The donor would then go under anesthesia during the procedure and then likely will feel soreness in the two regions for 2 to 7 days on average.
It can be a while before a person on the registry is called to donate, if ever. On average, a person can be on the registry between six to seven years before they match with a patient, according to Dr. Jacob. For a donor of color, it could be up to 12 years.
“When it is your loved one who is diagnosed, each and every one of us will respond in the same way. You hope, wish and pray that a random stranger will save the life of your loved one.....if we have the nerve to expect a random stranger to save the life of our loved ones, then why can't we be asked to do the same? Why can't we be someone's hope, wish and prayer?”
— Dr. Ron Jacob
If you are interested in being a part of the Be the Match registry, sign up here and a swab collection kit will be sent to you in the mail with instructions.