Transplants for All / Trasplantes para Todosby Emily Ayshford
One-of-a-kind program reduces Hispanic kidney transplant disparities. /
Un programa, único en su clase, reduce la desigualdad de los trasplantes en las personas de origen hispano.
Growing up in Colombia, Juan Carlos Caicedo-Ramirez, MD, ’06 GME, wanted to be an engineer, like his parents. But as soon as he realized that he liked working with people more than machines, he turned to medicine. “Machines cannot smile and hug you,” he says.
Caicedo earned a medical degree at Universidad Nacional de Colombia and eventually became a transplant surgeon because he wanted to save lives. “When a patient gets a transplant, they get a second chance,” says Caicedo, associate professor of Surgery in the Division of Organ Transplantation. But in order to continue his education and expand the types of transplants he could do, he needed to learn English. So in 2000, he traveled to Indiana for a short English-language immersion program.
While there, he took a trip to Chicago, stopped in at Northwestern’s Division of Organ Transplantation and spoke with its leadership. That fateful meeting ultimately led to a fellowship and an offer to work at Northwestern Memorial Hospital. But Caicedo had reservations about leaving the very people he hoped to save by becoming a transplant surgeon.
“I decided to stay in Chicago, but I wondered if I was letting my people down in Colombia,” he says. “Then I saw the need here. Nobody had any initiatives focused on Hispanics.”
Determined to change that, Caicedo founded the Northwestern Medicine Hispanic Transplant Program, which offers culturally competent and congruent care for Hispanic (both English- and Spanish-speaking) transplant patients and their families. By changing the way surgeons and support staff communicate with Hispanic patients, the 12-year-old program has brought in more patients, increased the number of living kidney donors for these patients and reduced the disparity that exists between ethnicities.
Now, Caicedo and his collaborators are expanding the program to other healthcare systems, with their eyes on nationwide deployment.
Caicedo started the Hispanic Transplant Program in 2006 after moving from Colombia to Chicago for a fellowship at Northwestern.
Six years later, the program had increased living kidney donations for Hispanic patients by 74 percent.
Today, the team includes Spanish-speaking surgeons, social workers, nurses and coordinators.
Disparities between Hispanic and non-Hispanic whites for living donor kidney transplantation have decreased by 70 percent.
REDUCING TRANSPLANT DISPARITIES
When Caicedo started the program in 2006, the need was clear. Research showed that Hispanic patients often spend more time than other ethnic groups on the kidney transplant waiting list and have a higher mortality rate while waiting for a kidney, often due to ethnic and socioeconomic differences in healthcare access. They also have lower rates of living donor kidney transplantation, which is considered the best type of transplantation option for better recipient outcomes. This is perhaps due to lack of knowledge about living donation, as well as misconceptions and cultural concerns, like the ability to bear children after living kidney donation.
Statistics show the need. In 2015, there were more than 98,000 patients on the kidney transplant waiting list in the United States, according to the Organ Procurement and Transplant Network, a federally mandated network responsible for organ procurement. Of those, 37 percent were non-Hispanic white, 34 percent were African-American and 20 percent were Hispanic. Among kidney transplants that year for Hispanic patients, only 27 percent were from living donors, while for non-Hispanic whites, living donations made up 45 percent of kidney transplants. The network also reports that only 10 percent of living donors were Hispanic, while 70 percent were white.
“Minorities make up the majority on the waiting list,” Caicedo says.
INVOLVING FAMILY IN PATIENT PROCESS
When he started the program, Caicedo was its sole champion. But soon he was joined by medical anthropologist Elisa Gordon, PhD, MPH, professor of Surgery in the Division of Organ Transplantation, whose research focuses on the ethics of organ transplantation and reducing health disparities. Together, they began systematically studying disparities in living kidney donations from Hispanic patients and found that major barriers included lack of knowledge, language, cultural differences, misconceptions about organ donation and transplantation, and lack of community awareness.
When you’re taking one organ and putting it into another person, you’re changing people’s understanding of the boundaries of self, and you’re incorporating into your identity the aspects of other people’s identity.
A big part of the Hispanic Transplant Program is communication — not only providing information in Spanish, but also communicating to the patient’s entire support network. Patients undergoing transplants are required by law to receive some sort of education, and while many hospitals provide education through nurses or staff, at Northwestern, Hispanic patients receive in-person education straight from Caicedo.
“Many in the Hispanic community highly regard physicians, so when a physician delivers the education, it’s a big deal,” Gordon says. When Caicedo first meets with a patient, he also invites others involved in the decision-making process, be they family, close friends or elders in the patient’s community.
“Getting grandma’s blessing is very important,” Caicedo says. “If you’re going through a big life event, you’re going to talk to grandma.”
EDUCATING DONORS ON THEIR ROLE
Educating families is especially important when transplant patients need a living donor. Asking a friend or family member for an organ can be awkward. “Most people won’t do it,” Caicedo says.
Not only does living donation require major surgery, donation can change the relationship between donor and recipient. If the organ is lost, for example, the donor or patient might feel guilty. Or if the transplant is successful, some donors might expect that the recipient take extra care of their organ by not drinking or smoking, and by eating healthy foods and exercising. That expectation, known as the “tyranny of the gift,” can cause friction and is often the reason transplant patients don’t want to accept living donations.
“When you’re taking one organ and putting it into another person, you’re changing people’s understanding of the boundaries of self, and you’re incorporating into your identity the aspects of other people’s identity,” Gordon says.
But the tyranny of the gift can be overcome through education and support. Caicedo sees big Hispanic families as a gift to patients. “Not only for finding a donor, but for patient outcomes,” he says. “That support network is important.”
Caicedo and Gordon soon found that potential donors needed to be educated on what the surgery meant for them — they often wonder whether they can exercise or have children after the procedure (they can), or whether they will need to take medication for a long time (they don’t). In addition to the in-person meetings, Gordon and Caicedo created Informaté, a bilingual, culturally targeted website replete with stories of patients, telenovelas and information on financial and immigrant issues related to transplantation and donation. The website is available for patients and families to help them learn about living donation and make informed treatment decisions.
Getting grandma’s blessing is very important. If you’re going through a big life event, you’re going to talk to grandma.
Caicedo also grew the clinical team, which now includes more than 20 members, including Spanish-speaking surgeons and clinicians, social workers, nurses, transplant coordinators, assistants and financial coordinators. “Our team can help us provide the best care, and the best healthcare is when you can communicate effectively in the patient’s language and when the team understands and shares the patient’s culture,” Caicedo says.
EXPANDING PROGRAM BEYOND NORTHWESTERN
By every metric, the program has been a success. A 2015 study comparing the six-year period before and after the program began showed that Hispanic patient additions to the Northwestern Medicine transplant waitlist increased by 91 percent. The number of Hispanic kidney transplant recipients increased by 70 percent, and the number of living kidney donations performed on Hispanic patients increased by 74 percent. That meant the program was bringing more Hispanic patients through the door and getting more of them the transplants they needed.
The program has also been able to decrease disparities between Hispanic and non-Hispanic whites for living donor kidney transplantation by 70 percent. It is the only program in the nation with this type of positive trend, according to Caicedo.
These numbers fare well against national statistics. For example, while around 30 percent of Hispanic patients nationwide receive a living donor kidney, at Northwestern Medicine hospitals that rate jumps to at least 65 percent, which is even higher than non-Hispanic white and African-American rates. “We’re showing that it’s possible to change these disparities — you just have to change your approach,” Caicedo says. In 2010, they expanded the program to include liver transplants.
Gordon and Caicedo are now helping the Mayo Clinic and Baylor Health Care System implement Hispanic kidney transplant programs into their transplant centers. They are currently in the process of evaluating whether the new programs are increasing living donation among Hispanic patients and conducting a budget impact analysis to see if the cost of setting up the program is offset by the gains in living donation.
Gordon is also thinking about developing culturally targeted initiatives for African-American living kidney donors. Research has found that two variants of the Apolipoprotein L1 gene (APOL1) gene often found in African-Americans are correlated with higher rates of kidney disease. And African-American living kidney donors have disproportionately higher rates of kidney failure post-donation than non-Hispanic whites. Small studies show that living donors who have the two gene variants could have higher chances of getting kidney failure after surgery.
Gordon is interested in exploring whether recipients and donors should be offered genetic testing for this gene variant — the APOL1 may explain those disparities in living donor outcomes. “Although guidelines suggest that potential living donors be informed about the option of testing, it’s unclear as of yet whether testing should become a routine practice,” she says.
Meanwhile, Gordon is collaborating with Johns Hopkins University on a new project that encourages potential transplant patients to find a “champion” who can use social media to increase awareness of the need for transplantation and to identify potential living donors. She is currently trying to recruit Hispanic and other patients into the trial.
The ultimate goal is to continue to hone and broaden culturally targeted interventions like these at hospitals across the nation.
“Our Hispanic kidney transplant program has been a pioneer,” Caicedo says. “This country is successful because of its diversity, and we should honor that. When the United States has embraced diversity like this, the United States has flourished.”