I was lucky. Perhaps not in the traditional sense, but I underwent two liver transplants before turning 28. And while I waited approximately 19 months for each donation, I got them before dying a preventable death. Many patients awaiting donors aren’t as fortunate. In fact, 17 Americans die each day waiting for an organ that’s too slow to come. One of the most complex medical advancement of our time continues—roughly 70 years after its first introduction—to be shrouded in misinformation. And no other group is more adversely impacted than African Americans and Hispanics, who, already used to facing structural racism and misogyny in western medicine, donate in disappointingly small numbers.
When I was first added to the liver transplant list in 1994, organ transplantation was considered a Frankenstein-like operation African Americans didn’t trust. It was an option for desperate whites with the financial means to afford what is still an astronomically expensive surgery. On more than one occasion, I was told to pray my symptoms away, to change my diet and add herbal remedies. To her credit, my mother considered every option. When I started seeing the transplant team at University of Colorado Health Sciences Center in Denver I was 19 years-old and in college. No one in my family had a history of serious illness. I would be the first. When medicinal treatments continued to fail, my mother and I agreed that a liver transplant was my only hope even though we had little information (there are still so few books on organ transplantation). Still, we agreed with doctors who told us that without a transplant I would die.
A devout Christian, Mother was certain that no God would ask her to simply sit back and watch her daughter die when there were medical options available to us. Besides, she’s always been very philanthropic and if given a chance to donate her own organs, I knew she would.
I sometimes wonder what would have happened had I not gotten a donor when I did. What I do know is that I would have likely died before I voted in my first presidential election; before I would marry the love of my life; before I experiencing motherhood and those tiny kicks to the gut; that I would’ve died before my parents, who would have had to bury the most vocal and artistic of their three daughters; that my father wouldn’t walk me down the aisle, lifting my veil and kissing my forehead like he’s done since I was a girl; that I would have died before hosting my first Thanksgiving dinner; and before I would’ve had a chance to make my mark on this world. Thankfully, I was lucky. Lucky enough to age into my 40s, (I hope graciously) and lucky enough to lobby for those who can’t advocate on their own behalf.
Organ donation is an area where minorities can excel, where we can do our part to save others, and eradicate some of the inequities plaguing our healthcare system. Ultimately, when every 9 minutes another patient is added to the transplant waiting list, misinformation is, and should be considered, a national health crisis.
Debunking Dangerous Myths
Below are some of the more dangerous and outrageous myths keeping minorities from giving the ultimate gift of life:
Mistruth: Doctors won’t try to save your life in an emergency if you are a registered organ donor.
Fact: Doctors will ALWAYS prioritize the health of the patient they are treating first. Only when a patient has died, will a transplant team member attempt to procure organs, and they will do so in the most ethical, respectful and legal way.
Mistruth: My religion doesn’t allow organ donation.
Fact: Organ donation is always a personal choice. You should never feel pressured into donating your organs or those of your loved one. But almost all of the major religions (most Protestant faiths, most branches of Judaism, Roman Catholicism and Islam consider donation to be either a charitable act or a private decision you should make of your own volition.
Mistruth: My family will have to pay to have my organs donated.
Fact: The families of deceased organ donors are not charged anything. It’s a generous act of charity.
Mistruth: If I agree to donate my organs, I will not be able to have an open casket at my funeral.
Fact: Donating your organs will not cause you to have a closed casket. The body of the deceased will be treated with the same care and dignity given to any other decedent.
Mistruth: You have to be young and in perfect health to donate your organs.
Fact: There’s no set age limit for organ donors and you do not have to be in perfect health. The emergency medical team caring for the donors are responsible for assessing the viability of the organs. If you elect to become a donor, leave that decision up to the medical providers.
Mistruth: If I donate my organs, there’s a chance they’ll end up on the black market.
Fact: It’s illegal to buy and sell organs in The United States. Further, the distribution of donated grafts is incredibly rigorous process that ethical, selective and multi-layered.
Mistruth: I cannot trust America’s healthcare system give what happened during the Tuskegee Syphilis Experiment, the theft of Henrietta Lacks’ cancer cells, and the obstetrician known as the ‘Father of Gynecology,’ who performed painful medical surgeries on enslaved Black women without administering anesthesia.
Fact: African Americans have every right to be suspicious of American doctors and medical institutions. And while we recognize that every entity has its flaws, the various intuitions responsible for collecting and donating organs are always working hard eradicate any possible inequalities.
Mistruth: Donated organs go to wealthy or famous patients first.
Fact: The process of matching organs to potential transplant recipients is quite complex, and it has nothing to do with income level or socioeconomic status. According to the United Network for Organ Sharing (UNOS), organs are matched based on a number of key factors such as blood type, height, weight, urgency of the medical condition, and time spent on the transplant waiting list.
Mistruth: Someone might try to sell my organs on the black market.
Fact: The complexity of the organ transplantation process itself makes this type of scenario virtually impossible. Not only that, but federal law strictly prohibits the buying and selling of human organs in the United States.
By dismantling the myths and misconceptions surrounding organ donation and transplantation we can save many lives. Life flourishes when it’s steeped in the truth, when life-saving decisions are made from a place of factual information not fearful mistruths.
Kim Lute, Contributor
Lute is the Regional Marketing Manager for Morehouse School of Medicine’s Cardiovascular Research Institute. Before joining Morehouse, Ms. Lute worked as Peabody and DuPont award-winning journalist for CNN International. She later wrote for the Huffington Post where her opinion pieces frequently focused on America’s uneven political and social landscape. Her other bylines have appeared in The New York Times. The Guardian, Newsweek, The Washington Post’s Root Magazine, The Atlantan and the Atlanta Journal Constitution, among many others. She recently received her Master’s in Narrative Nonfiction Writing from the University of Georgia in Athens. Currently, she is penning a book on organ transplantation titled, WHAT TO DO WITH JOY, TO BE YOUNG. BLACK, DRIVEN AND SICK. It will be the first transplant memoir written by an African American. She is a two-time liver transplant recipient and is passionate about increasing organ donor awareness. She is represented by the Ayesha Pande Literary Agency in New York.