Exploring the State of the Science of Solid Organ Transplantation and Disability Proceedings of a Workshop (2021) / Chapter Skim
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2 Solid Organ Transplantation in the United States and the Experiences of Organ Recipients and Their Caregivers
2 Solid Organ Transplantation in the United States and the Experiences of Organ Recipients and Their Caregivers
Pages 11-24
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OVERVIEW OF THE SOLID ORGAN TRANSPLANTATION SYSTEM Opening the first session, David Mulligan, president of the Organ Procurement and Transplantation Network (OPTN) and the United Network for Organ Sharing (UNOS)
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Together, Mulligan noted, OPTN and UNOS maintain a national database of avail able organs and the transplant waiting list and help to distribute organs equitably based on a set list of matching criteria, such as medical urgency, blood type, organ size, waiting time, and geographic distance. Mulligan discussed the survival rates for transplant patients.
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DISPARITIES IN TRANSPLANTATION RECOVERY AND SURVIVAL Tanjala Purnell, associate director of the Johns Hopkins Center for Health Equity and Urban Health Institute, has conducted extensive research on topics such as racial, ethnic, and wealth disparities in transplant recovery and survival. She framed her talk by stating that many factors contribute to differing transplant survival rates, such as age, body mass index, and etiology, as discussed in Chapter 3; but she said many social factors also contribute to whether transplant outcomes are positive or negative.
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Arriola (2017) proposed a model of different types of racism experienced by African American transplant recipients, including internalized racism, personally mediated racism, and institutionalized racism (see Figure 2-1)
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Despite a few encouraging statistics showing that the racial inequality gaps in transplant outcomes may be getting smaller, there is still a long way to go to combat racial, ethnic, and wealth disparities in transplant outcomes, she concluded. FIGURE 2-2 Factors that influence disparities in access to care and quality of health care services, by level.
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They discussed the challenges of living with chronic diseases and the difficulties of managing life after organ transplantation. Valen Keefer described her transplant journey beginning at the age of 10, when she was diagnosed with polycystic kidney disease (PKD)
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She attempted a trial period at the position; she still had occasional hospitalizations, but it went well, and her employer was very understanding. "I think disability for people with kidney transplants needs to be individualized," Edwards stated; "it can't just be the recovery from journey in and of itself." She added that many patients would feel more comfortable if they did not have the pressure of needing to go back to work after that 3-year period or risk losing their health care coverage.
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She wishes that employers would consider her value as a competent attorney with two law degrees, not as a liability for being an organ transplant recipient. Robert Montgomery is a transplant surgeon at the New York U niversity Langone Medical Center who also underwent a heart transplant.
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McQueen's son was eventually able to leave the hospital, but the treatments were not enough, and by the time he was 8 months old, he needed a heart transplant. Because they did not have a transplant center close to their home, they had to fly to Dallas, Texas, and were able to receive a heart shortly after the initial evaluation.
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Social Worker Perspective Charlie Thomas, social worker at the Banner-University Medical enter Phoenix, explained that every U.S. organ transplant center certified C by the Centers for Medicare & Medicaid Services is required to have a statelicensed, master's level social worker.
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. Finally, Thomas shared recent results from a Swiss Transplant Consortium examining kidney, liver, heart, and lung transplant recipients: nearly 50 percent were employed by 12 months after transplantation, but the major predictor for this was pretransplant employment status (Vieux et al., 2019)
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. Montgomery asked about the most difficult period following the transplant procedure, and McQueen commented that the transplant itself is similar to a short sprint, but the posttransplant experience is a long-distance run.
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SOLID ORGAN TRANSPLANTATION IN THE UNITED STATES 23 patient and graft survival, for the purposes of financing and reimbursement. Because of this emphasis, he said, that is where the health care financing flows, leaving less support for the longer-term recovery.
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