Ay Masakit! Donor outreach and the Filipino ouch factor
There are many misconceptions within the Filipino American community on the subject of bone marrow/adult stem cell donation. Within the Filipino American community there is an idea that bone marrow donation is an extremely painful procedure. This concept of pain might explain why there are only 57,000 Filipino Americans registered bone marrow/stem cell donors, according to the Be the Match registry. This is a very low number when compared to the 3.4 million Filipinos residing in the United States according to the 2010 US Census. It is highly likely that these numbers do not include “TNT Filipinos” (undocumented Filipino immigrants). Where is this misconception of excruciating pain coming from?
One can argue that this fear of pain is shared among different ethnic groups since the level of exposure to the donation process is similar. With the luxury of working with different ethnic communities, I am able to learn and sometimes dispel some of these misconceptions. Indulge me as I share some personal experiences. During various bone marrow/stem cell registration drives within the Filipino community I get many comments about why they won’t register. Let’s start with the common, yet not surprising comment, “Ay masakit!”(Oh, it’s painful!). I’ve also dealt with obscure comments such as “No, I don’t want to give my bone away,” “I need all of it” and “Does this mean you will remove my bones?” After providing a careful explanation of what the donation process means, with the utmost enthusiasm and professionalism, a lot of Filipino Americans are simply not convinced. In the end they wish to stick with their shared beliefs.
I also facilitate bone marrow/stem cell registration drives at a South Asian, Vietnamese, and Chinese communities. I experience difficulties with these communities due to a language barrier. Even with a language barrier, individuals from these communities seem more receptive to the cause, especially when we discuss the importance of ethnicity when it comes to matching between patients and donors. Yes, there are more South Asians and Chinese in terms of total population, but the 2010 US Census places Filipinos as the second largest immigrant population in the United States. So what’s the deal?
The general public’s exposure to the marrow donation process is very limited. It should be safe to assume that our perception of a topic will depend on the type of exposure we have on that subject. The media presents the marrow donation process as a very painful ordeal. A great example is from the movie 7lbs starring Will Smith. Spoiler alert: they sort of got the idea wrong. In the movie, Smith’s character chooses who he will donate his marrow to and he decides to be fully awake during the procedure. It is very unlikely you will have the ability to choose who receives your marrow. This is because bone marrow transplants require very specific matches. Second, when you donate marrow through the marrow collection procedure you are given general anesthesia. You will be asleep during the procedure and will not feel the pain when they collect marrow. You will experience soreness in your lower back after the donation for 5-7 days, but you can go back to your everyday activities the day after. And many actually donate through peripheral blood rather than marrow extraction.
There is a sense of irony when it comes to Filipino Americans and their attitude towards being bone marrow/stem cell donors. It is well known that there are many Filipinos Americans in the medical field, primarily in the nursing field. Data collected through the National Sample Survey of Registered Nurses stated that in 2000, Filipino Americans represented 43% of nurses in the United States. With all the education that is needed to be in the medical profession, Filipino Americans in this field should be well equipped with the knowledge about the importance of being a marrow donor. But they are not; numbers don’t lie.
Don’t be discouraged. In 2009, there were 40,000 registered Filipino American marrow donors in the Be the Match registry according to marrowdrives.org. In 2010, there were 57,000. We are slowly getting more Filipino Americans in the registry. Being a bone marrow/stem cell donor may not be for everyone. But before making that decision, we should try to educate ourselves with accurate information to make an informed decision. We should take it upon ourselves to learn about the importance of being a marrow donor because we could save a life of a fellow kababayan.
I had no idea what a bone marrow transplant was until stumbling upon AADP almost four years ago. You might consider me lucky; I had no bias towards the procedure. Upon learning about it, I was not exactly gung-ho about having a needle being in my hip. The information that really got my attention was the lack of minorities in the registry. In that moment it clicked in my mind that regardless of the pain that I might have to endure, it’s nothing compared to the challenges that await the patients. But that’s just me.
James de Lara is the Senior Outreach And Volunteer Coordinator (Filipino Community) for the Asian American Donor Program.