Needing a life-saving organ and getting one are two different things and the complicated process may not always be fair.
Being added to the heart transplant list at the Children’s Healthcare of Atlanta at Egleston was a difficult fight for 15-year-old Anthony Stokes. Until three days ago, he was deemed ineligible for a heart transplant based on the hospital’s transplant screening process, with little explanation other than a history of “noncompliance.”
“[Determining] compliance is up to the transplant team,” says Dr. Clive Callender, professor of surgery and founder of the National Minority Organ and Tissue Transplant Education Program (MOTTEP) at Howard University. “Socioeconomic factors are up to the transplant team. They can exclude you based on their evaluation.”
Determining compliance is a component of the screening process that determines whether the person will be able to adhere to the strict, complicated regimen of medications and appointments that follow a transplant. If the regimen isn’t followed, the body could reject the organ and it could stop functioning altogether. And stakes are higher with certain transplants, Callender points out.
“If the kidney rejects, you go back on dialysis. Whereas for a heart transplant [like Stokes’], it’s life or death,” he explains.
If someone appears to be noncompliant early on with their medical care, transplant doctors are hesitant to give that person an organ that may be lost due to that noncompliance.
“If you really can identify that a person is not going to be complaint with medication that’s one thing,” Callender says. “No one wants to waste an organ.“
But, he adds — and Stokes’ parents insisted that — Stokes didn’t have a medical history to use in making that determination.
Generally speaking though, Callender says, teenagers are the least compliant transplant patients because, as he says, “they think they’re going to live forever.”
There are also other reasons that certain patients aren’t placed on the list. The patient not being healthy enough to survive the surgery is one, as well as having active cancer or active infections. However, some factors are simply up to the transplant doctors’ personal discretion — for instance, the ability to pay.
“Every center has their own methodology. How are you going to pay for the transplant? How are you going to pay for the immunosuppressant medications afterwards? If you’re unable to pay for the transplant or the meds, you will therefore not get on the list,” Callender says.
Kidney transplants are an exception. Medicare automatically insures patients with end-stage kidney disease on dialysis, and Medicare also pays for kidney transplants. So those without means can still afford to receive a kidney transplant. But liver, lung and heart transplants are a different story, and those patients need to prove that they can pay.
This is part of the reason, Callender says, that — despite the fact that people in minority populations suffer from diseases like liver failure and heart failure in significant numbers — this is not reflected on the transplant waiting list.
For example, African-Americans only make up 12 percent of the population. Yet, they make up 34 percent of those listed for kidney transplantation and only 7 percent of those listed for liver transplants. This doesn’t mean that black patients don’t suffer from as much liver failure; it’s just that they didn’t make the list. Of note, kidney failure is also more common in black patients because of the predisposition for high blood pressure and diabetes. Surprisingly, in the same data, heart transplants didn’t show the same disparity: 20 percent of those listed for a heart transplant are black.
According to the most recent data from the Organ Procurement and Transplantation Network, 38,302 black people are on the transplant waiting list, but that still doesn’t include the many who need organs.
“If you’re not on the list, you don’t become a statistic. Nobody even recognizes you,” says Callender.
Callender, who has been a transplant surgeon for 40 years, created MOTTEP with the goal of educating minority communities about donating organs and tissue.
“The number one problem in transplantation these days is the shortage of donors,” he says. “About 30,000 transplants are performed each year, but there are 120,000 on the list.”
In 2012, only 14 percent of black Americans waiting for a transplant received one; 27 percent of white Americans received one.
Yet, Callender boasts progress over the years. He recalls that, in 1980, there were eight African-American donors per one million people. That increased to 22 per million in 1990, and 53 per million in 2008.
MOTTEP started in the District of Columbia with a survey about why African-Americans were reluctant to donate, and since then has become a national outreach where organ donors, organ recipients and healthcare providers go into the community to educate and absolve some of the most common misconceptions about donating.
Callender emphasizes the importance of having the community do the work, “to move from awareness to action to accountability so the community can really make the difference.”
Regarding Stokes, he adds: “I think that the issue of doing the right and proper thing, which the media forced [the hospital] to do, is one of the things that’s ever with us.”
Dr. Tyeese Gaines is a physician-journalist with over 10 years of print and broadcast experience, now serving as health editor for MSNBC’s theGrio.com. Dr. Ty is a practicing emergency medicine physician in New Jersey and clinical instructor of emergency medicine at Yale School of Medicine. Follow her on twitter at @doctorty.