“We do not defeat death with a transplant; rather, we gain an extension of life. So the real question becomes, wwhat are we going to do with the days, months, and hopefully years of extended life?’… the same question even the non-transplanted face in their own lives.”
—Quote from a heart recipient
Anthony Stokes’ private fight to live became a public spectacle that turned the harsh light of society on a medical practice that has been part of America for decades.
When the 15-year-old Georgia resident was denied an opportunity to get on the heart transplant list by Children’s Healthcare of Atlanta at Egleston, allegedly because of his lifestyle, the dark underbelly of the transplant system was exposed.
A thinly-veiled overriding determining factor seemed exposed—who lives and who dies depends on who has the money.
When dealing with minorities in the world of organ transplanting, the global economy and the value of human life come into play when determining who lives and who dies, and it is usually the African American who dies, contends Don Shorter of the World Health Organization.
Shorter stated he wanted to make it clear that “in the United States, when we examine transplants on a microcosm level and focus on African Americans, certain issues arise as in the case of 15-year-old Stokes, which eventually led to an African American almost not receiving a organ, and not living a full life. However, if you are White, you have a better chance of getting extended life through a organ donation sometimes regardless of age.”
Shorter bases his conclusion on a study—“Access to Kidney Transplantation” (2008)—which found that White males, who were young and nondiabetic with a high income and being treated in small kidney transplant units were more likely to receive a organ transplant under Medicare than Black kidney patients. The study also found that the size of a transplant unit may be correlated with access.
The numbers on minorities and organ transplants
National Minority Donor Awareness Week, celebrated annually Aug. 1-7, is a nationwide observance to educate minorities of the desperate need for donation and transplantation within the multicultural community.
Approximately 56 percent of those on the U.S. transplant waiting list are minorities.
• In 2012, 11,309 minority patients received organ transplants; while there were 2,762 minority deceased donors and 1,711 minority living donors.
• More than 66,000 minority patients are currently registered on the U.S. organ transplant waiting list.
• Minorities make up 36 percent of the U.S. population and comprise 56 percent of individuals on the U.S. transplant waiting list. They represent 32 percent of living and deceased organ donors.
• African Americans are four times more likely than Caucasians to be on dialysis because of kidney failure, which must often be treated by kidney transplantation.
• Diabetes, a leading cause of kidney failure in the U.S., is estimated to be four to six times more common in Latinos/ Hispanic-Americans.
• 17 percent of all patients awaiting organ transplants in the United States are of Latino heritage.
Additionally, the authors found a variety of issues that may explain the disparity between White and Black patients. These include medical suitability, provider selectivity based on unknown criteria, and patient characteristics.
Dr. Eric Topal, a cardiologist at Scripps Health in La Jolla, Calif., believes that if you are Black, poor and uneducated more than likely your physician will not recommend a organ transplant. Conversely, if you are privileged, he will.
Dr. Topal points to the case of former Vice President Dick Cheney, who got special treatment at the expense of taxpayers when he was given a new heart at age 71 and thousands of younger individuals on the same list to receive that heart, including young minorities, were overlooked. It is obvious that Cheney’s power overruled one key transplant criteria that younger patients be given first consideration.
“The ethical issues are not that he had a transplant, but who didn’t?” Dr. Topol wrote on Twitter.
In the case of Stokes, Shorter notes that the African American teen was initially denied a heart transplant because of a history that is common with a large number of Black teens in the United States—problems or encounters he had in the past with law enforcement and issues with performing well in school, according to his family.
Media sources covering this incident reported that officials at Children’s Healthcare of Atlanta at Egleston had informed Stokes’ family in an Aug. 7 letter that the teen didn’t qualify for its heart transplant list because he has a history of “non-compliance” based on those his grades and encounters with law enforcement.
The letter stated “Furthermore they didn’t have any evidence that he would take his medicine or that he would go to his follow-ups,” according to Melencia Hamilton (Anthony’s mother). The family received this disheartening letter when the young man had only six months to live and needed the transplant to survive.
Doctors at the hospital refused to reveal the specific reason Stokes was kept off the transplant list. Stokes’ mom suspected the family’s financial situation may have played a role in the hospital’s decision in addition to his grades and probation record.
“I think that they don’t think that we can pay for the medicine. We probably couldn’t get to the doctor visits because of transportation. I don’t have a car,” Hamilton told reporters at a press conference at the time.
Children’s Healthcare of Atlanta responded in a statement: “The well being of our patients is always our first priority. We are continuing to work with this family and looking at all options regarding this patient’s health are. We follow very specific criteria in determining eligibility for a transplant of any kind.”
Stokes did eventually receive a heart transplant at Children’s Healthcare of Atlanta, according to family spokesman Mark Bell. He is recovering and “doing great.”
Dr. Pang-Yen Fan, chair of the United Network for Organ Sharing (UNOS) Minority Affairs Committee, says the problem with Stokes’ denial could possibly be due to many factors, from financial constraints to poor social support and including living situations, language barriers, limited education, inadequate healthcare coverage and patient mistrust.
Although there was no initial distrust by the Stokes family, many African Americans do not fully trust the medical industry when organs are discussed. This distrust stems from incidents like the “Tuskegee experiment” where Black men with syphilis were left untreated for a government study; other studies reporting unequal treatment between Whites and Blacks with heart disease; and years of medical experimentation that has been performed on African Americans since colonial times.
In fact, incidents of experimentation became so common that a term was coined to explain the phenomenon—medical apartheid.
The concerns of African Americans are so deeply entrenched that in a speech delivered May 13, 1994, Minister Louis Farrakhan, leader of the Nation of Islam, charged that Whites do little in combating Black-on-Black crime because victims provide a supply of organs for Whites.
Needless to say, these comments were vehemently denied in the transplant community. Dr. Alan Hull, vice president of the National Kidney Foundation asserted that race is not a factor in deciding who receives an organ transplant. An article published in the American Society of Nephrology journal reported that in 1992, more than two-thirds of the total number of kidneys transplanted into Blacks came from Whites.
John Arradondo, co-chairman of the NAACP National Health Committee, stated that others hold Farrakhan’s views in the Black community.
There was no evidence found that Minister Farrakhan’s speech had a impact on organ donations or requests to be placed on a recipient’s list, however transplant physicians feel that such remarks further impact the procurement of African American organs.
The reference to the initial denial of 15-year-old Stokes could be possibly misinterpreted by African Americans who might feel that bad grades could indicate a learning disability or a substandard education system. They could also be reflective of poor social support. Limited education in reference to minorities could also be a reflection of social injustices so you cannot condemn a kid to death due to standards set by the United Network for Organ Sharing (UNOS) and the Organ Procurement and Transplantation Network (OPTN).
Medical factors that may impact African Americans as recipients include differences in blood type and human leukocyte antigen (HLA), and even geography plays a role, because minority patients are often concentrated in areas with long waiting times for transplants. Studies and articles over many years have documented the problem. Recently, a 2007 study found that doctors’ unintentional racist feelings can affect how they diagnose and treat patients.
Minorities, particularly Blacks, are also referred for transplantation later than Whites. A 2007 Harvard University “Unconscious Racial Bias” study found that Black patients living in poorer neighborhoods were 56 percent less likely than Whites to be placed on the transplant waiting list. A 10-year-study published in 2008, “Blacks Awaiting Lung Transplants More Likely to Die or Be Denied Than Whites” by the American Thorasics Society determined that Blacks with chronic obstructive pulmonary disease are less likely than Whites to get a lung transplant.
Another study, “The Effect of Race on Access and Outcome in Transplantation” by Dr. Bertram Kasiske conducted in 2011, is consistent with almost all the other articles studying racial differences in kidney allocations.
Are these much-documented disparities actually racism, or are they the result of differences in patient financial, educational and cultural status?
“Of course there’s racism,” says Dr. Clive O. Callendar head of the transplant program at Howard University in Washington, D.C., and founder of the Minority Organ Tissue Transplant Education Program (MOTTEP). “It reeks in transplantation, along with the rest of healthcare. It affects all solid organs, but it exists even more so in end-stage renal disease.”
On the other hand, Dr. Robert Gaston, a transplant nephrologist and professor of medicine at the University of Alabama at Birmingham, says, “It’s not that the system is rigged or that there’s necessarily racism in the sense most of us think of the term. There’s just a convergence of physiologic, socioeconomic, educational and environmental variables, with the net impact that African Americans are more likely to have problems getting transplants than others.”
Kasiske commented that Blacks and other disadvantaged groups might have a lower motivation and assertiveness, along with less education and ability to relate to the referral and transplantation system. He adds: “I believe that more Blacks would be willing to receive a transplant if they were informed of the benefits of a transplant.”