National Marrow Donor Program: Donors of Color Needed!

The National Marrow Donor Progam is worldwide hub connected to over 500 cancer treatment facilities and possessing a vast database of t donor issue types which doctors comb through to find bone marrow matches for patients with deadly diseases like leukemia. The current odds of finding a bone marrow match for white people are not high, but the odds are even worse for African American, Hispanics, Asians, Pacific Islanders,and Native Americans because the National Marrow Donor Program's web databases contain very few people of color in their database. Recently, I learned how amazing this donor process is, how easy, how safe, and how needed donors are - especially donors of color. According to the National Marrow Donor Program website " a pressing need remains for more people who identify themselves as American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino, Native Hawaiian or Other Pacific Islander, or multiple-race to volunteer as donors or to donate umbilical cord blood."

I recently went through the process of being tested to see if my bone marrow, already on the Marrow Donor Progran's donor registry, would be a match for a real person for whom I had popped up as a potential match. While I learned the chance of my marrow matching this patient - of anyone's marrow matching this patient- is small- only 8% of tests come back with a match- I lalso earned the odds are even tougher when the patient is a person of color. (I am caucasian...) I learned when it comes to finding matches, race and ethnicity matter. According to the site, "Because tissue types are inherited, their most likely match is with someone from the same racial or ethnic group." Perhaps if you are reading this and are African American, Asian, Pacific Islander, Hispanic, or Native American, you have considered getting on the Marrow program registry before. I hope you will change that maybe to a "I'm going this month!' or "I'm going this week!" or even just "I'll check out the website." It could be one of the best and most important decisions you ever make.

My own foray into the marrow program began when a relative's wife put out a call for everyone she knew to get on the registry, get tested to see if they were a match for her dad who was gravely ill with cancer. While I had heard of this testing process before, I had never given it much thought. But I knew I couldn't say no to this request.

So, I went into Boston, to the amazing Dana Farber Cancer Institute, the closest National Marrow Donor Program-connected location near me, filled out some paper work, and had some blood draw. I remember being amazed at how quick the process was. It was nothing. And to think something one could feasibly do on a lunch break could save a life? Amazing. It was also free. Apparently, when you get tested for a certain person, they may be picking up the cost, so the normal fee of $52.00 charged for tissue typing for is waived. This brings up my first note: minority donor volunteers get the fee waived automatically, according to someone I contacted with the program. This is an indication of how great the need is for these ethnic groups. So, if you are a potential donor and a person of color, know that cost will not be an issue. If you are white, and want to be a potential donor, and the cost seems prohibitive, contact the National Marrow Donor Program (website below) and ask about aid options in your area.

Sadly, no one's efforts to find a match for my relative's father-in-law helped and he passed away. This was several years ago. As I mentioned, though, I learned just recently getting on the registry for a person you know- which is why many people get involved - can hand you a surprise. Suddenly, you're headed back to Dana-Farber because a woman on the phone in Minnesota, half a country away, has called you out of the blue to say your bone marrow might help a nine year old boy fight off a disease with a hideous sounding name.

Even now, knowing the chance I'm a match is minuscule, I still get a chill thinking about that call. Imagine being able to help save some little kid's life? Someone you don't even know? On the other hand, I also think of that poor family, knowing those odds are against them. But then, imagine being a mom or dad of a child of color, knowing that long shot is might be even longer because the NMDP has few people matching your race or ethnic group. Imagine your chances- your child's chance - being maybe less than even 8%. Actually, I try not to imagine it, because, as the aunt of three biracial children, it's too horrible to imagine.

Anyhow, when I received this call, I took a 10-15 minute survey asking me about my health. Some illnesses and conditions, as other articles on AC on this topic have pointed out, will keep you from being moved forward in the process. Do yourself justice, though, and don't guess that any condition you have will preclude you. Talk to someone at the Donor Registry and ask them. They may tell you your condition doesn't take you out of the running.

After the call, I was contacted by someone from the NMDP, again, situated at the Dana Farber Cancer Institute. I scheduled an appointment - they were incredibly flexible. I went into city for the second test. It was as quick as the first one. The very helpful and friendly woman explained what was happening: my blood was going to be checked at a more in depth level to see if I were a close enough match to be an actual donor. It was like I was in the semi-finals, waiting to go to the championship game. If I was a match, I'd be called in sixty days or so, when the results came in, and the process would move forward. I remarked on how it was amazing how people could have something in their blood that could match and help a complete stranger. "Yes," she agreed, "...when you consider we're looking for a genetic match." This is even weirder considering 70% of people don't even match with their own family members, according to the site. But it's another reminder of how important it is to have the biggest base to search that is possible- and another reminder why people of color are needed to increase the small representation of minority groups in that base.

I also got some information from my guide on how the bone marrow would actually be harvested (as detailed in this AC article....) Personally, I was thinking to myself, yeah, okay, needle to the back of the pelvis bone or drugs that make your muscles ache some as they make your blood produce tons of stem cells: not too pleasant. Add in, I am a huge chicken. But on the other hand: nine year old kid with cancer....I don't get the impression giving the actual marrow is a fun time, but I did get the impression the discomfort was over quickly and most people were back onto their normal life in a week or so. Again, if you're someone who has considered donating before, no matter what your color, please don't let preconceptions about the pain and time off from work, etc. stop you! Contact the Registry and ask them to explain it. You may find your anxiety greatly eased by the facts.

So, anyhow, now I am waiting. I'm waiting for at least sixty days to see if I can help some kid or not. I know I will probably not be a match (the woman said she'd let me know either way...).But, you never know. I was also told people who get to this second round of testing may get called back again because their on-file information is more in depth and may pop out again for someone else because of it. Who knows. The odds are so long. All I know is we can't let the odds make us hesitate from getting tested. This does save lives. It may seem like getting on the National Marrow Donor program registry is like helping people look for a needle in a haystack. But think of it another way: you might be that needle.

I just hope anyone who has considered getting on the National Bone Marrow Registry before, particularly much-needed people of color, but really, anyone- everyone- I really hope you will check out the website and contact people, talk to people who work for the NMDP and get all the facts you need to make an informed decision. Whether you are driven by religious belief in loving your neighbor, a desire to help your community or by empathy you feel because you have lost a loved one to this evil disease of cancer, make a leap of faith that you could be in that 8% - and than take action.