Earlier this month, we recognized National Minority Donor Awareness Week. As of August 2015, there are over 10,000 people on the organ transplant wait-list in New York State. While minorities make up 64% of the individuals on the waitlist, only 39% of organ donors last year were minorities. Although organs are often matched irrespective of ethnicity, transplant matching is more likely to occur from donors of the same ethnic background. So, it’s important for efforts to be made to improve public awareness to increase the number of minority organ donors.
One organization doing just this is LiveOnNY. On August 7th, they hosted their first Asian Community Open House to highlight the importance of minority organ donation awareness, especially within the Asian-American community. Staff members explained their roles in the donation process, and donation recipients gave testimonies of how their lives were affected through receiving the gift of life. I talked to Yie Foong, the Family Services Outreach Coordinator at LiveOnNY. She spoke of the role that LiveOnNY has in promoting organ donation in minority communities.
DN: What is the mission of LiveOnNY?
YF: LiveOnNY is our organization’s name. It captures the role of the donor and how they are living on through giving the gift of life, and it also shows how the donation recipient is living on as well. It is incredible because the donor family, by choosing to donate, is preventing another family from going through the same acute grief that they are going through. That’s a beautiful thing and encapsulates what LiveOnNY is all about.
Long Live NY is our campaign slogan. Currently, there are more than 10,000 people on the waitlist in NY, which means that a person dies every 15 hours on the waitlist. We want to increase the donation rate to make sure that no New Yorker dies as a result of waiting too long on the waitlist.
DN: What are some recent efforts or campaigns being done to raise the donation rate?
YF: Our best advocates are our donor families. We have donor recipients who volunteer their time at the DMV to talk about their experiences with organ donation. Since the DMV is not the ideal place to think about organ donation, we have recipients there who can spark that type of conversation.
We were at Charles B. Wang Community Health Center’s Good Health Day in Chinatown, which was very successful for us as we had six people sign up for the registry. So constantly being a presence in the community, giving out flyers, and planting that seed of knowledge are the basis of most of our efforts.
DN: What is the importance of making sure minorities are more aware of organ donation?
YF: For some minorities, especially in the Asian community, they’ve created this mythos surrounding death – they believe that if they talk about death, then death will happen. The Asian community places a lot of importance on the concept of body integrity. For example, surgery is not looked upon favorably by some in the Asian community because it goes against the idea of body integrity. So it’s very challenging to accept organ donation with respect to body integrity.
Also, the conversation about end-of-life decision making is lacking in the Asian community. Not just organ donation but also DNRs (do not resuscitate) and so forth. Since these issues are not talked about, families aren’t sure what the deceased person’s attitudes towards organ donation may be.
DN: What efforts are being made in the minority community to improve the donation rate?
YF: As I said before, our best advocates are our donor families. In 2013 and 2014, we had 22 Asian families who donated and so we’re beginning to build a coalition of Asian donor families. The idea is that while I may know how the Chinese community views organ donation, I have no idea what’s going on in the Korean, Vietnamese, and Japanese communities. There are so many intricacies and challenges facing each culture, so we hope that his coalition will help to address some of those issues.
DN: Can you address some of the misconceptions regarding organ donation such as doctors withholding treatment if they find out you’re an organ donor?
YF: First of all, doctors do not know whether you are an organ donor or not. Along with EMS, the doctors are doing everything they can to save your life – it’s not even a consideration as to whether you are on the registry or not. Even when a family is in the ICU, the doctor still doesn’t know whether you are on the registry or not, which has no bearing on the doctor’s decisions.
Also, you want the transplant coordinators to be there because our presence ensures that the doctor is doing everything to make sure you have the best chance at survival, because if they aren’t doing that, then that means the organs probably won’t be viable for donation anyway.
There is so much that medicine cannot do unfortunately, but we know that organ donation and transplantation works. We know that the anti-rejection medications we give recipients work and that transplants are not only successful but that people are thriving and can live full, healthy lives. We know that the medicine can make it happen, so the challenge is getting people to make the decision to donate.
Written by Isaac Song.
Isaac is currently the communications intern at the Charles B. Wang Community Health Center. He graduated from Rutgers University with a BA in Molecular Biology & Biochemistry.