The Living Legacy Foundation of Maryland is a non-profit health service organization, works to educate the public about the importance of organ, eye and tissue donation to save lives. (Photos by Matt Roth)

By Jessica Dortch
AFRO News Editor

Most of the time, especially in the Black community, becoming an organ donor is closely associated with death. It is too often disregarded and tossed in the pile of things to do before you die, but The Living Legacy Foundation (The LLF) of Maryland, a non-profit health service organization, works to educate the public about the importance of organ, eye and tissue donation to save lives. The LLF is working with their partner organization Donate Life Maryland to change that narrative, one conversation at a time. 

According to the LLF’s Manager of Community Outreach Ieesha Johnson, a single organ donor can save up to eight lives and a single tissue donation can enhance the lives of over 75 people. Johnson, who has been in the donation and transplantation field for over a decade, has experience on the receiving end of a donation. “I am a recipient of donor bone, so I have a connection to tissue donation and a passion for working in the community and educating the public about the importance of organ, eye and tissue donation. I also have a passion for helping African Americans and multicultural communities to understand the need for donation.”

Every 10 minutes a person is added to the organ donation waiting list, and 20 people die everyday waiting for a transplant. In the Black community, the need for an organ transplant is high, yet the designation rate is low. “A lot of people don’t think about donation until they actually know someone who needs an organ, or if they themselves need an organ transplant. It is not a day to day conversation and that is something that we strive to change,” Johnson explained. 

Johnson said that members of the Black community have expressed concerns about the recipient of their donation. While donors have the option of doing a directed donation, in which the donor can choose a recipient, sometimes the organ and the intended recipient just don’t match. 

It is understandable that donors want to help people who need a transplant in their own communities, but organs are not matched by race or age. There are many factors that make a match including blood and tissue type. However, Johnson shared that research has revealed a surprising trend. “African-American kidneys will last a lot longer in an African-American recipient and we are the highest on the waitlist,” Johnson said. That is good news for Baltimoreans who hold 53% of all kidney waitlist patient zip codes in the State of Maryland.

The AFRO asked Johnson a few key questions that would help readers make an informed decision about organ donation:

AFRO: Besides organs, what else can people donate to help save lives? 

IJ: You can donate tissue, bone, heart valves, skin, veins, cartilage and eyes. I was a recipient of donor bone. Back in 2013, I had an accident where they found that I had a tumor in my hand. The doctor said that they could either cut open my thigh and take the bone tissue from my thigh, or I could receive a donation. I opted for the tissue donation. 

AFRO: Thinking about organ donation can be scary or uncomfortable because of its connection to death and loss. How are you working to change this narrative? 

IJ: Back in 2016, we started a grassroots campaign called “The Decision Project.” We realized the low designation areas of our community fell into Baltimore City. We also found out that that same area had the highest rate of transplant need in the State of Maryland. We wondered what we could do that would be different, and we found that we needed to go back to the old school way of educating people. We started cold calling people and asking for a meeting, listening to the community and doing focus groups. That is where the Decision Project came from.

The Living Legacy Foundation of Maryland’s “Summers in the 7th Block Party.” (Photos by Matt Roth)

The purpose of that is to educate, inspire and have a conversation. We found out that a lot of people in the Black community weren’t trusting of medical professionals and hospitals which goes back to the Tuskegee Experiment and Henrietta Lacks among others. We started pouring into our communities and giving back. We weren’t asking people to be organ donors, we just wanted them to know that we actually care. We have been doing this for about five years now and we’ve seen an increase in donor designation rates and authorization rates. What that means is people who say “yes” to organ donation. We realized that the change in the narrative is to talk about it and have these uncomfortable conversations. 

AFRO: How does the Living Legacy Foundation of Maryland support families?

IJ: I think that our family service coordinators are the heart and soul of our organization because they do what I could never do. They talk to families who just tragically lost someone. It’s not like the person had a terminal illness and had been given five or six months to live. No, these are people who have died tragically in car accidents, brain aneurysms, heart attacks and other things that they could not recover from. The family service coordinators support them by making sure that loved ones understand what is happening. They work with the hospital team of nurses and physicians, and they don’t even have a conversation about organ donation until the family knows that their loved one is deceased.  

Then from there, we give them time. We come into the room and talk about the patient. We ask questions about what their loved one was like and what they did in their spare time. Those conversations lead to us discussing the possibility of organ donation. The family drives the process. However, if someone signs up to be an organ donor, we do tell the family and provide proof. If the family is hesitant, then the family service coordinator will let them process and ask questions. Sometimes, it is not a that the person signed up, it is that they didn’t tell anyone in their family.   

The Living Legacy Foundation has much to offer all members of the community. Every November, the organization reaches out to the faith-based community by hosting a Gospel Fest during the month of November in honor of National Donor Sabbath . For the past three years, the event has been held in the Park Heights community, as they have the highest need and the lowest designation rate in the city. The festival and concert feature a celebrity emcee, gospel artists from Maryland, a wait list recipient and a donor family from that same community. 

If you have a passion for helping others and are interested in educating the Black community about organ donation, visit www.thedecisionproject.org. For more information on the Living Legacy Foundation (Donate Life Maryland) and to become an organ donor, visit www.donatelifemaryland.org

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