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

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.

In Maryland, more than 2,500 people are waiting for organ donation – and 44 percent of them are black.

In 2016, she discovered that while only 9 percent of Baltimore residents in the majority-Black 21215 ZIP code were registered organ donors, that same ZIP code had the highest number of people on a transplant waitlist 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 responsible for coordination, advocacy, family support, and public and professional education for organ, eye, and tissue donation.

“We’ve found that the waiting list in this area is so high because of access to healthy food, health inequities, and distrust of medical institutions and the medical profession because of things like the Tuskegee experiment and what happened at Johns Hopkins with Henrietta Lacks is so high,” Johnson said.

The project originally wanted to meet the residents of the Park Heights neighborhood, which largely makes up the 21215 ZIP code.

“For the first two years we did nothing but embed ourselves in what was already happening in the community. We began by sponsoring the Park Heights Health Alliance community garden, Brassica Fest where people could come and pick produce, Gospel Fest each November, lacrosse and golf camps for children who might not otherwise have the opportunity,” Johnson said.

After two years of getting to know the community and identifying their needs, the project conducted three focus groups in 2017 and 2018. The focus groups allowed the foundation to learn more about the barriers to organ donation. The focus groups indicated that many people who lived in the year 21215 knew someone who was on dialysis, or knew someone and/or had family members who were waiting for a kidney transplant, but no one wanted to talk about it because it just wasn’t done , talk about it.

“We also found that people were worried about not knowing who [was] preservation of the organs. They heard stories on TV about organ donation to someone who was famous, and they assumed organs were being taken from the (black) community and not given back,” Johnson said.

The focus groups also brought to light widespread medical suspicions, particularly of Johns Hopkins Hospital, and misconceptions about the organ donation process. To combat misinformation, a transplant recipient or donor family was always present at the focus groups to ensure no one got away with the facts about organ donation.

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

Johnson says donor organs go to the sickest recipients first.

Next, matches are made by blood type and tissue matches, and finally by how long a patient has been on the waiting list. If a donor organ is available, a local recipient is first sought, then the search can be extended to a 250-mile radius. Kidneys can be pumped and preserved for 24 hours, but hearts and livers need to be transplanted faster.

The project hosted an additional series of focus groups near the Johns Hopkins Medical campus in Baltimore and found that medical suspicions and negative feelings run quite deep in Baltimore City over what happened to Henrietta Lacks at Johns Hopkins Hospital.

Black people are disproportionately affected by health problems that often lead to the need for organ transplants. Diabetes and high blood pressure can ruin your kidneys, vision and heart. Minorities are highest on the waiting list in Maryland, particularly for kidneys. While the project seeks to empower and encourage Black people to sign up for organ donation, they know that preventing these conditions is vital.

Ieesha Johnson created The Decision Project to educate underserved communities about organ donation. In the first five years of targeted outreach, organ donor registrations in the 21215 ZIP code increased by 500 percent. (Photo courtesy)

“My thing is I don’t want you on the list at all. So what can we do in the community to prevent you from even being on the list? We want to help ensure there is more health screening for blood pressure, HIV screening and Covid testing, and we can also do one-to-one health life education,” Johnson said.

The Decision Project has a grant from the Maryland Food Bank, which gives away fresh produce when they have an event in the 21215 ZIP Code because that community suffers from food insecurity.

This helps to educate and promote a healthy diet and lifestyle 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 that area and had to run out and get ice cream or something and we drove a few miles. We couldn’t find a grocery store. And we know this is a problem across the country, not just here in Baltimore,” Johnson said.

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

“At the end of the day, whether you say yes or no is up to you. We just want you to have enough information to make it happen,” Johnson said. Hence the name The Decision Project.

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

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

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 hospital staff is your life and health. Organ, eye, and/or tissue removal is performed only after medical personnel have exhausted all efforts to save a patient’s life and the patient has been officially declared dead by the attending physician.

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

FACT: There are very few diseases that automatically exclude you from organ donation. Transplantation 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 November 21, 2013, allows the removal 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.”

FACT: The opposite is true. Organ donors undergo more testing to be officially declared dead than patients who have not consented to organ donation.

MYTH: “My family has to pay for donation-related medical expenses.”

FACT: The donor’s family is never responsible for any costs related to eye, organ or tissue donation.

MYTH: “Donations are 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 setting your faith about giving, consult your pastor, pastor, rabbi, or other religious leader.

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