By Mylika Scatliffe,
AFRO Women’s Health Writer
Ieesha Johnson wants to empower the Black community to make informed choices and decisions about organ donation.
Maryland has more than 2,500 people waiting for organ donations– and 44 percent of them are Black.
In 2016 she discovered that while only 9 percent of the Baltimore residents in the majority Black zip code of 21215 were registered organ donors, the same zip code had the highest number of people on a transplant wait list in all of Maryland.
Johnson created The Decision Project on behalf of the Living Legacy Foundation of Maryland. The Foundation is the state’s organ procurement organization in charge of coordination, advocacy, family support, and public and professional education for organ, eye, and tissue donation.
“We discovered the waitlist is so high in this area because of lack of access to healthy food, health inequities and mistrust of medical institutions and the medical profession because of things like the Tuskegee experiment and what happened at Johns Hopkins with Henrietta Lacks,” said Johnson.
Initially the project sought to get to know the citizens of the Park Heights neighborhood, which largely makes up the 21215 zip code.
“For the first two years we didn’t do anything except embed ourselves into the events that were already going on in the community. We began sponsoring the Park Heights Health Alliance community garden, Brassica Fest where people could come and pick produce, the Gospel Fest each November, lacrosse, and golf camps for kids who might not otherwise get the opportunity,” said Johnson.
After two years of getting to know the community and finding out what they need, the project held three focus groups in 2017 and 2018. The focus groups allowed the Foundation to learn about the barriers to organ donation. The focus groups revealed that many people living in 21215 knew someone on dialysis or knew someone and/or had family members waiting for a kidney transplant, but no one wanted to talk about it because talking about it simply wasn’t done.
“We also found out that people were concerned that they didn’t know who [was] receiving the organs. They would hear stories on television about organ donation happening for someone famous, and they were assuming that organs were being taken from the (Black) community and not being given back,” said Johnson.
The focus groups also brought to light widespread medical mistrust, particularly with the Johns Hopkins Hospital, and misconceptions about the organ donation process. In order to combat misinformation, there was always a transplant recipient or donor family present at the focus groups to make sure no one left with the facts about organ donation.
Because of the misconceptions about how donor organs are allocated– mainly that organs go to rich and famous people first– the project makes sure to explain how decisions are made about who receives donor organs.
Donor organs go to the sickest recipients first, according to Johnson.
Next, matches are made according to blood type and tissue matches, and finally by how long a patient has been on the waitlist. If there is a donor organ available, a local recipient is sought first, then the search may go out to a 250-mile radius. Kidneys can be pumped and preserved for 24 hours, but hearts and livers need to be transplanted more quickly.
The project held an additional set of focus groups near the Johns Hopkins medical campus in Baltimore and found that medical mistrust and negative feelings run quite deep in Baltimore City because of what happened with Henrietta Lacks at Johns Hopkins hospital.
Black people are disproportionately affected by health conditions that often lead to the need for organ transplants. Diabetes and high blood pressure can ruin your kidneys, eyesight, and heart. Minorities are highest on the wait list in Maryland, especially for kidneys. While the project wants to empower and encourage black people to register for organ donation, they know that preventing these conditions is key.
“My thing is I don’t want you on the list in the first place, so what can we do out in the community to prevent you from getting on the list in the first place? We want to help get more health screenings for blood pressure, HIV screening, Covid tests and we can also do one on one health lifestyle education,” said Johnson.
The Decision Project has a grant with the Maryland Food Bank that provides fresh produce to give away whenever they have an event in zip code 21215, because this community does suffer from food insecurity.
This helps to educate and promote healthy eating and lifestyles to try and prevent the need for a transplant in the first place. “We didn’t really realize until we had our first block party in that area and had to run out and get ice or something and we were driving a few miles. We could not find a grocery store. And we know that’s an issue across the country, not just here in Baltimore,” said Johnson.
Organ donation is the ultimate gift. The Decision Project wants to give back to the community and provide information so people can first and foremost be healthy, but also make informed decisions about organ donations.
“At the end of the day, whether you say yes or no, the decision is yours. We just want you to have enough information to make it,” said Johnson. Hence, the name The Decision Project.
When it comes to organ, eye, and tissue donation, knowledge is power.
One of the biggest goals of The Decision Project is to dispel some of the biggest, most common organ donation myths.
According to decisionproject.org, the following are some of the most common misconceptions and facts about organ donation:
MYTH: “If I’m a donor, the hospital won’t work as hard to save me.”
FACT: The top priority of the hospital staff is your life and health. Organ, eye, and/or tissue recovery takes place only after medical staff has exhausted all efforts to save a patient’s life, and the patient has officially been declared dead by the attending physician.
MYTH: “I’m too sick to be an organ donor.”
FACT: There are very few medical conditions that automatically disqualify you from donating organs. Transplant decisions are based on strict medical criteria. People with diabetes, high blood pressure, HIV and cancer can donate. In fact, the HIV Organ Policy Equity Act (HOPE Act), enacted on Nov. 21, 2013, allows for the recovery and transplantation of organs from HIV-positive donors to HIV Positive recipients.
MYTH: “I’m too old to donate.”
FACT: Anyone regardless of age or medical history can register to be an organ donor.
MYTH: “They might take my organs before I’m actually dead.”
FACT: The opposite is true. Organ donors are given more tests to be declared officially dead than those patients who have not agreed to organ donation.
MYTH: “My family will have to pay for donation-related medical expenses.”
FACT: The donor’s family is never responsible for expenses related to eye, organ, or tissue donation.
MYTH: “Donation is against my religion.
”FACT: All major religions support organ, eye, and tissue donation as the ultimate act of charity. If you have specific questions about your faith’s view on donation, consult your minister, pastor, rabbi, or another religious leader.
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