Fall 2014

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Improving Access to Transplants

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Juan Carlos Caicedo is a member of the Public Voices Thought Leadership Fellowship Program, a partnership with the OpEd Project. This year-long program provides a select group of scholars across all disciplines with the resources, support and skills needed in order to dramatically increase their visibility and influence as thought leaders in academia and the world at large. Learn more about the 2013–14 Public Voices cohort.

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Northwestern’s Hispanic Transplant Program is making life-saving surgeries more accessible by removing cultural, linguistic barriers.

Juan Carlos Caicedo had been a kidney transplant surgeon in Bogotá, Colombia, when he came to the United States in 2003 to further his training. While studying English at Indiana University in Bloomington, Caicedo dropped in at Northwestern during a visit to Chicago. Frank Stuart ’59 MD, the former chief of the Feinberg School of Medicine’s transplant center, and Michael Abecassis ’00 MBA, the current chief, welcomed him.

“I didn’t speak much English, but they talked with me that day for a long time,” recalls Caicedo. “This shows just how open Northwestern is. They opened the door for me without any type of reference or anything.”

Caicedo ’06 GME completed an extended fellowship at the medical school and had planned to return to Bogotá to continue his work as a multiorgan transplant surgeon. “Then Northwestern offered me this amazing opportunity to stay here,” says Caicedo, an assistant professor of surgery at Feinberg. “That was great, but I felt like I was not sharing what I had learned with my own people.”

So, in December 2006, Caicedo launched Northwestern Medicine’s Hispanic Transplant Program. “I struggled with all the cultural and linguistic barriers when I arrived in this country,” he says. “I suffered because I couldn’t communicate. And I saw that patients were suffering too. I very quickly realized that it would be good to personalize or tailor the same care that we provide to non-Hispanics to Hispanics.”

With increasing rates of diabetes, hypertension and obesity — all leading causes of end-stage organ diseases — Hispanics have a greater need proportionally for organ donation than do non-Hispanic whites. The fastest-growing minority group in the United States is also the fastest-growing group on the waiting list for kidney transplants. Of the more than 22,000 Hispanics on the organ transplant waiting list, 86 percent are waiting for a kidney.

For those patients, not having a Spanish-speaking health care provider to help guide them through the transplant process can mean suffering and even death. That’s where the program’s 20-plus member bilingual team of surgeons, nurses, social workers, transplant specialists and support staff step in, communicating with patients in their own language and acknowledging cultural differences to make living-donor transplants more easily understood and accepted in the Hispanic community.

Caicedo says he was shocked when he found that nearly 70 percent of Hispanic recipients received their organs from a non-related deceased donor.

Hispanics often have big families, Caicedo says, increasing the pool of possible donors. “Some people may think it’s a big problem to have big families, but when you’re talking about organ donation, it’s a big advantage.”

Caicedo helps clear up misconceptions about religion too. He says some Hispanics don’t know that most religions are in favor of organ donation. He points out that Pope John Paul II called organ donation an act of love.

“In our clinics, when we are educating a patient, we also bring in the rest of the family, including grandma and grandpa,” the elders who are often the decision makers, Caicedo adds. “You have to improve the knowledge and attitudes of the family and friends who support the patient.”

A number of the program’s patients are also participating in transplantation-related studies, bucking the misconception that Hispanics are not willing to participate in research, Caicedo says. One clinical trial, led by Joseph Leventhal, director of kidney and pancreas transplantation, is examining the use of specially engineered stem cells from kidney donors that allow the recipient’s immune system to recognize the new kidney as its own, avoiding or reducing the need for long-term use of antirejection medication.

In the past eight years the Hispanic Transplant Program has completed 461 transplants. In 2005, the year before the program began, Hispanic patients represented just 9 percent of all living-donor kidney transplants done at Northwestern Memorial Hospital. By 2013 that percentage had more than doubled to 23 percent. 

“Usually physicians try to treat everyone in the same way. I think that is a big mistake,” Caicedo says. “The final care should be the same, but the approach needs to be personalized.”