By Amyre Brandom
It’s the time of year when every household fret about what gifts to give but sometimes the greatest gifts are selfless and free. One gift that could save lives is the act of becoming an organ donor. Yet in the Black community, statistics show this is a gift that’s high in demand, but rarely given.
African-Americans make up the largest group of minorities in need of an organ transplant. In 2014, African-Americans comprised 12.7 percent of the national population. The number of organ transplants performed on Black Americans in 2015 was only 17 percent of the number of Black Americans currently waiting for a transplant, according to the U.S. Department of Health and Human Services Office of Minority Health.
Believing the myths about organ donation is not the only reason why African-Americans choose not to donate, explained Sirdaria Williams, the Community Educator for the Louisiana Organ Procurement Agency. Africa- Americans do not register to become organ donors because they don’t understand what it means to be an organ donor and the process it entails.
“I try to be as transparent as possible and answer any questions because I do find that for people that have been hesitant to say yes to donation is because they don’t understand the process,” Williams said. “I try to go through the process with them in terms of what that looks like.”
When speaking to the African-American community, those that believe in the myths of organ donation tend to share with LOPA Employees that their hesitation to donate is because they do not want their organs to only go to White Americans.
“I go through the process of reminding them about United Network for Organ Sharing (UNOS): the donation list depends on need [blood type, tissue type, medical urgency, waiting time, expected benefit, geography and other criteria] and taking the time to go through the process of what it takes to qualify to receive an organ,” said Williams, who believes that educating African-Americans whenever she can is not just her job but her obligation.
Roderick McGee, a New Orleans native, was on dialysis for five years due to a seizure that sent him into renal failure in 1993. He was put on the transplant list and while waiting continued to ask God for strength. Little did he and his wife know, that he would be off of the waiting list soon. In July 1997, Roderick’s brother-in-law died of an aneurism. They performed emergency surgery on his brother to reduce the swelling in his blood vessel, but he was pronounced brain dead two days later. A LOPA Staff Member approached Roderick and his family to ask for consent for organ donation. Still in shock, three hours later the family decided to allow their loved one’s organs to be donated. Roderick’s wife, Cheryl, approached the doctors to ask if her husband could receive one of her brother’s kidneys since he was already on the transplant waiting list.
“What I did, but did not know it at the time, is called direct donation. They ran test and the next day we found out that my brother and husband were a match,” said Cheryl McGee-Hills, a former Louisiana Organ Procurement Agency Volunteer and current LOPA Community Educator. Through organ donation, this family continued to grieve the life of their loved as they allowed this loss to save someone else’s life. “My husband received one of my brother’s kidneys and four people in Louisiana, Mississippi, Georgia, and Florida received his other organs,” McGee-Hills said.
Benefits of Becoming a Donor
Employees of organ procurement agencies are constantly told new myths from African- Americans about why they do not want to become an organ donor. “The concerns that comes up a lot are about open casket funerals, ‘If I sign up to be an organ donor, will they save my life?’, or – I just want to take all of my body parts with me,” McGee Hills said.
Organ and tissue donation do not impact a family’s decision whether to have an open or closed casket funeral, experts said. Family advocates remind donor families that all incisions from donations are covered by their loved one’s clothing. Whether the casket is partially or completely open, no one will know they were a donor unless a family member shares that information.
Once a donor is pronounced legally dead, the wishes of the deceased and their family are considered during the organ recovery process. “A dad and mom loss their son, they had a request that Amazing Grace be played during his tissue recovery while someone is holding his hand. Our family advocate recorded a video of their requests being met and sent it to the family,” Williams said. Advocates, technicians, and community educators go out of their way to fulfill requests to ensure that a family never feels like their decision to say yes is in vain.
Although the incidence of end-stage renal disease (ESRD) in African-Americans is four times greater than in their White counterparts, African-Americans remain less likely than Whites to be referred for, or undergo kidney transplantation, according to the U.S. Department of Health and Human Services. African-American’s statistically are afraid or distrustful of the medical community as a whole, Public Health Professionals note. Males in the African-American community are known for only going to the doctor when they are in unbearable pain, experts said. They do not make yearly or six-month checkup visits for doctors to monitor their health. In addition, research has shown that African- Americans have a history of being disproportionately diagnosed with high blood pressure and diabetes. It is common for African-Americans to use this as a reason not to become a donor. “African-Americans wait longer because we do not donate. [The odds are better for] African-Americans donating to African- Americans; we have that genetic makeup to make it easier. Almost perfect,” McGee- Hills said.
The process and procedures that involve becoming a donor are different in every state. Organ Procurement Agencies across the country are all partners that act as an extension of a not-for-profit alliance known as Donate Life America. Within these agencies, the organs and tissues that can be donated are heart, kidneys, lungs, pancreas, liver, intestines, corneas, skin, tendons, bone, nerve and heart valves. “Only 2 percent to 3 percent of people qualify to be a donor. It is a very rare and unique opportunity, but most people do not qualify at their time of death to be a donor,” Angel-LeBlanc said.
To sign up to become an organ donor can take place at a local Motor Vehicle Office or online at organdonor.gov. A red heart is placed on an individual’s license when it is renewed even though their name is already placed on a list with other donors.
Medical advances and groundbreaking laws continue to change organ donation, in even the most difficult cases. For instance, before November 2013, the development and publication of research criteria relating to transplantation of HIV Positive Organs into HIV Positive Individuals did not exist, according to the Department of Health and Human Services. Since then, the Hope Act, was recently changed in November 2015 to allow transplanting from HIV-Positive Donors into HIV-Positive Recipients.
According to Donate Life America, medical technology continues to advance more unique forms of transplants can take place than possible before. This means that the number of patients in need of organs will continue to surpass the number of donors. Up to 2,092 people are currently waiting for a life-saving organ transplants in Louisiana. “Why not make life happen if you can?” Williams said.