#WordinBlack: The Decision Project educates and dispels myths about organ donation within the black community

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% of them are black.

In 2016, she found that while only 9% of Baltimore residents in the majority of 21215 black ZIP codes were registered organ donors, the same ZIP code had the most people on a waiting list of transplant throughout Maryland.

Johnson created The Decision Project on behalf of the Living Legacy Foundation of Maryland. The Foundation is the state’s organ procurement organization responsible for the coordination, advocacy, family support, and public and professional education for organ, eye, and blood donation. fabrics.

“We discovered that the waiting list is so long in this area due to lack of access to healthy food, health inequalities and distrust of medical institutions and the medical profession. because of things like the Tuskegee experience and what happened at Johns Hopkins with Henrietta Lacks,” Johnson said.

Initially, the project sought to learn about the citizens of the Park Heights neighborhood, which largely makes up the 21215 zip code.

“For the first two years, we did nothing but integrate into the events that were already happening in the community. We started sponsoring the Park Heights Health Alliance Community Garden, Brassica Fest where people could come and pick produce, Gospel Fest every November, lacrosse and golf camps for kids who might not have one the occasion otherwise,” Johnson said.

After two years of getting to know the community and discovering its needs, the project held three focus groups in 2017 and 2018. The focus groups allowed the Foundation to learn about 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 just wasn’t done.

“We also found that people were worried about not knowing who [was] receive the organs. They would hear stories on TV about organ donation for a famous person, and they assumed the organs were taken from the (black) community and not returned,” Johnson said.

The focus groups also highlighted widespread medical mistrust, particularly of 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 ensure no one walked away with the facts about organ donation.

Due to misconceptions about how donor organs are allocated – primarily that organs go to the rich and famous first – the project makes sure to explain how decisions are made regarding who receives donor organs. .

Donor organs go to the sickest recipients first, according to Johnson.

Then, matches are made based on blood type and tissue matches, and finally based on how long a patient has been on the waitlist. If there is an organ donor available, a local recipient is searched first, then the search can extend to a radius of 250 miles. Kidneys can be pumped and stored for 24 hours, but hearts and livers need to be transplanted faster.

The project held an additional round of focus groups near the Johns Hopkins medical campus in Baltimore and found that medical mistrust and negative feelings ran quite deep in the city of Baltimore because of what happened with Henrietta Lacks. at Johns Hopkins Hospital.

Blacks are disproportionately affected by health issues that often lead to the need for organ transplants. Diabetes and high blood pressure can damage your kidneys, eyesight and heart. Minorities are highest on the waiting list in Maryland, especially for kidneys. Although the project wants to empower and encourage black people to register for organ donation, they know that preventing these conditions is essential.

Ieesha Johnson created The Decision Project to educate underserved communities about organ donation. In the first five years of targeted community outreach, organ donor registrations in the 21215 zip code increased by 500%. (Courtesy picture)

“My thing is, I don’t want you on the list in the first place, so what can we do in the community to stop you from being on the list in the first place? We want to help get more health screenings for blood pressure, HIV screening, Covid testing and we can also do individual health lifestyle education,” Johnson said.

The Decision Project has a grant with the Maryland Food Bank that provides fresh produce to donate whenever they host an event in the 21215 ZIP code, as this community is food insecure.

This helps educate and promote healthy diets and lifestyles to try to prevent the need for a transplant in the first place. “We didn’t really realize it until we had our first block party in this area and we had to run for some ice cream or something and drive a few miles. We couldn’t find a grocery store. And we know that’s a problem across the country, not just here in Baltimore,” Johnson said.

Organ donation is the ultimate gift. The Decision Project wants to give back to the community and provide information so that people can first and foremost be healthy, but also make informed decisions about organ donation.

“Ultimately, whether you say yes or no, the decision is yours. We just want you to have enough information to do that,” Johnson said. Hence the name The Decision Project.

When it comes to organ, eye and tissue donation, knowledge equals power.

One of The Decision Project’s main goals is to dispel some of the most common myths about organ donation.

According to decisionproject.org, here 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.”

DO: The top priority of hospital staff is your life and health. Organ, eye and/or tissue recovery only takes place after medical personnel have exhausted all efforts to save a patient’s life and the patient has been officially declared dead by the physician treating.

MYTH: “I’m too sick to be an organ donor.”

DO: There are very few medical conditions that automatically disqualify you from organ donation. 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), signed into law on November 21, 2013, allows for the retrieval 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 as an organ donor.

MYTH: “They could take my organs before I’m actually dead.”

DO: The opposite is true. Organ donors undergo more tests to be officially declared dead than patients who have not accepted organ donation.

MYTH: “My family will have to pay for the medical costs related to the donation.”

DO: The donor’s family is never responsible for expenses related to the donation of eyes, organs or tissues.

MYTH: “The gift is against my religion.

DO: 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 of giving, consult your minister, pastor, rabbi, or other religious leader.

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