Portal de Periódicos da CAPES

Stepping Up to Reduce Racial Disparities in Transplantation

2018; Elsevier BV; Volume: 18; Issue: 4 Linguagem: Inglês

10.1111/ajt.14728

1600-6143

Lara C. Pullen,

Racial and Ethnic Identity Research

This month’s installment of “The AJT Report” tackles the complex issues surrounding efforts to reduce racial disparities in transplantation, and spotlights the social value of celebrities sharing their donor or recipient stories. This month’s installment of “The AJT Report” tackles the complex issues surrounding efforts to reduce racial disparities in transplantation, and spotlights the social value of celebrities sharing their donor or recipient stories. The multifaceted challenge requires moving past blame and working together toward a comprehensive, problem-solving approach “Research describing the long-standing racial disparities in transplantation is important, but we need more studies that go beyond reporting the problem,” says Rachel E. Patzer, PhD, MPH, director of the Transplant Health Services and Outcomes Research Program at Emory University School of Medicine in Atlanta. Tanjala Purnell, PhD, MPH, agrees; she is assistant professor of surgery in the Division of Transplantation at the Johns Hopkins University School of Medicine in Baltimore, and lead author of the most recent high-profile paper describing the persistence of disparities in live donor kidney transplantation.1Purnell TS Luo X Cooper LA et al.Association of race and ethnicity with live donor kidney transplantation in the United States from 1995 to 2014.JAMA. 2018; 319: 49-61Crossref PubMed Scopus (145) Google Scholar She also suggests that the next step should be the collaboration of different communities to address the problem. “The conversation has, in my opinion, focused on shifting the blame,” she says.KEY POINTS•Racial disparities persist regarding access to transplants.•It is problematic for patients to rely on a system in which dialysis is the main entry point for transplant education.•Researchers call for an end to the “blame game” and a focus on coordination in addressing this medical need. •Racial disparities persist regarding access to transplants.•It is problematic for patients to rely on a system in which dialysis is the main entry point for transplant education.•Researchers call for an end to the “blame game” and a focus on coordination in addressing this medical need. Sometimes that blame is placed on the patient, Dr. Patzer says, but communities are also blamed for not stepping up. Other times, transplant surgeons blame nephrologists, and vice versa. “I really think where I would like to see us go as a community is to really move beyond the blame game,” says Dr. Purnell. “How can we collectively come together to think about innovative ways to advance this issue?” “We know that disparities are a big issue,” agrees Elisa J. Gordon, PhD, MPH, professor of surgery (organ transplantation) at Feinberg School of Medicine at Northwestern University in Chicago. “We now have a lot of evidence of effective interventions to reduce disparities in access to transplantation and living donation. It’s time to systematically implement these interventions. Healthcare systems need to make equity a priority by putting these interventions into practice.” Dr. Purnell describes her early experiences as a student watching patients receive dialysis, and notes that it was a lot like watching a cancer patient going through chemotherapy. These very sick and tired individuals often woke up early in the morning to commute to a dialysis center and receive a complicated therapy, and often depended on their community for transportation. The current treatment paradigm proposes that at this lowest moment in their lives, patients confront the challenge of finding a living donor and taking on the burden of a transplant surgery. The transplantation community needs to face this untenable situation, contends Dr. Purnell. It is unfair to have patients rely on a system that promotes dialysis as the primary entry point for transplant education. It is also unfair to ask nephrologists to take on the burden of educating these vulnerable patients not only about their current therapy, but also about another complex therapy they might receive. Many patients come from families and neighborhoods with more than their share of kidney failure, diabetes and hypertension. They carry this pain with them into dialysis, and it colors their willingness to turn to the people they love for a live organ donation. Patients with end-stage kidney disease who decide to move forward with a transplant and who identify a living donor must then face the cost of transplant. Medicare covers renal replacement and the first three years of immunosuppression. After that, patients must pay for their own medication at a cost of approximately $10,000 a year. Private insurance and Medicaid pay for the immunosuppression, but patients on Medicare must pay for it themselves, putting these individuals at a higher risk of losing their organs after three years. Living donors must also bear a burden. Although few studies have directly examined donors’ financial costs, experts estimate that they may total $5000 or more. In many cases, living donors would also benefit from better and more comprehensive financial support. The bottom line is that “most of these issues are not because patients don’t want live kidney donor transplants,” emphasizes L. Ebony Boulware, MD, professor of medicine at Duke University School of Medicine in Durham, North Carolina. Since patients want a transplant, she feels that the transplant community is obliged to implement interventions to address this unmet medical need. Dr. Patzer works in Georgia, a state with historically the lowest rate of kidney transplantation in the nation. The majority (70%) of the state’s patients requiring a transplant is African-American, and Dr. Patzer has thought deeply about the problems of disparity. In 2014, she co-authored an article stressing the importance of the Affordable Care Act and Medicaid expansion as key tools in the fight to alleviate geographic disparities in the southern states: “Waiting lists are going to continue to increase,” she says, and transplantation programs will need a plan for these longer lists.2Patzer RA Pastan SO Kidney transplant access in the Southeast: View from the bottom.Am J Transplant. 2014; 14: 1499-1505Abstract Full Text Full Text PDF PubMed Scopus (35) Google Scholar The foundation of any good living donor program is outreach, so Georgia recently tested the effectiveness of a program whereby trained kidney transplant recipients serve as patient navigators for patients with end-stage kidney disease within dialysis facilities. This strategy increased patient referrals to a transplant center when combined with other educational interventions.3Basu M Petgrave-Nelson L Smith KD et al.Transplant center patient navigator and access to transplantation among high-risk population.CJASN. 2018; Crossref Scopus (34) Google Scholar The Emory Transplant Center has tested a social worker navigator intervention targeting mostly African-Americans, and patients assigned a navigator experienced a higher number of living donor inquiries. “There are a number of interventions being tested to reduce disparities, and there is likely not one single intervention that will solve this complex problem,” notes Dr. Patzer. Dr. Purnell agrees, but calls on the broader transplantation community to act. “There is so much more that we could be doing and should be doing together,” she says. “We forget sometimes that patients are the experts in what goes on in their day-to-day lives. We should use the lessons learned from addressing disparities in other fields, such as cancer and cardiovascular disease,” suggests Dr. Purnell. She calls on transplant centers to take a truly comprehensive approach with patient input as its foundation to build trust and pave the way for success. One of the fundamental challenges in transplantation is educating patients that the procedure is a societal responsibility; transplant centers can be strong advocates in this regard and should not rely on a third party to produce or promote this education. Such is the conclusion of numerous experts, including those who gathered at the June 2016 White House Summit on Organ Transplantation.4Pondrom S White House holds summit on organ transplantation.Am J Transplant. 2016; 16: 2241-2242Abstract Full Text Full Text PDF PubMed Scopus (8) Google Scholar Unfortunately, explains Dr. Purnell, “We don’t have a resource that is really targeting the different cultural issues….That is something that we could do.” The United Network for Organ Sharing (UNOS) Kidney Transplant Learning Center (KTLC) is meant to fill that role.5United Network for Organ Sharing. Kidney disease & treatment. Kidney Transplant Learning Center page. https://transplantliving.org/kidney/what-are-kidneys/. Accessed February 19, 2018.Google Scholar An online educational resource about transplantation and living donation created by the collaborative efforts of several transplant researchers and clinicians, the UNOS KTLC is intended to serve as a highly curated repository of educational materials about transplant, including information on cultural sensitivity. Many of these educational resources already exist, but they are associated with different universities. The hope is that, over time, the KTLC can serve as a central clearinghouse of information so patients and clinicians can find what they need, when they need it. As it stands now, the question becomes: Is the right information getting to the right patient at the right time? “It is time for us to really think about a major disruption of this system,” responds Dr. Purnell. That disruption could take many forms, but will likely include the Centers for Medicare & Medicaid Services, patients, the general community, nephrologists and transplantation teams. With true listening and collaboration, everyone should be able to attend to this unmet medical need. “The transplant process was a lot,” relates Donald Jones, retired wide receiver of the National Football League’s Buffalo Bills, in a March 2017 video he made for the National Kidney Foundation. “My family, they were all willing to be tested. My father was the first to actually do it and he was a match. So, even though I was on five different lists, I never really had to go through with that whole process because my father was the guy.” Mr. Jones retired because of his kidney disease and regularly speaks about his journey on behalf of the National Kidney Foundation. He understands that high-profile donors and recipients can do a lot to educate and inform the public about transplant. “It would certainly normalize kidney donation if people were talking about the need,” agrees Rachel E. Patzer, PhD, MPH, director of the Transplant Health Services and Outcomes Research Program at Emory University School of Medicine in Atlanta. Experts contend that such conversations, spurred by the widespread stories of successful transplants on social media and elsewhere, help address the stigma around donation that is prevalent in many communities. “In our prior work, we found that there was an age effect. Older African-Americans expressed higher levels of medical mistrust and spiritual concerns about donation that we didn’t see in younger African-Americans,” notes Tanjala Purnell, PhD, MPH, assistant professor of surgery in the Division of Transplantation at the Johns Hopkins University School of Medicine in Baltimore. She reflects? how, for her generation, Facebook and television shows like Grey’s Anatomy that regularly included transplant and donation may have “helped to normalize donation as a thing we all do as a society.” The recent, compelling Instagram image of singer Selena Gomez holding the hand of her friend and kidney donor Francia Raisa as they lie in side-by-side hospital beds, arguably did more for enlightening the general public that any public awareness campaign could. The post’s 10.3-plus million likes placed it, by one estimate, as the third most liked Insta shot of 2017. The simple image announced to the younger generation, loud and clear, that kidney donation is simply what we do, as friends and as a society.