Financial hardship in organ donation
Jacob M. Appel, M.D., J.D., M.P.H.
Hedda Martin, a sixty-year-old Michigan woman, has attracted national attention after posting online that her healthcare provider urged her to raise $10,000 on GoFundMe, a popular online fundraising platform, in order to be eligible for a life-saving heart transplant. Martin, a former dog walker and pet sitter, suffered doxorubicin-induced cardiomyopathy during chemotherapy for breast cancer and was ultimately placed on a left ventricular assist device as a bridge to transplant. Yet during the screening process prior to listing for a potential transplant, Martin’s providers at Spectrum Health became concerned that she would not be able to afford to pay for her $700 monthly anti-rejections medications until she reached her insurer’s $4,500 annual deductible. Although Martin ultimately managed to raise more than the needed $10,000, while Spectrum suffered negative media exposure, her case drew attention to significant shortcomings in the current organ allocation system.
Since taking over the nation’s organ allocation network in 1986, the non-profit United Network for Organ Sharing (UNOS) has established guidelines and protocols for transplant eligibility. While so-called “social worth” is never considered in the process (a legacy of the “God Committee” at Seattle’s Swedish Hospital, which did use perceived societal value as a criteria for scarce dialysis treatments in 1962—and faced a public backlash), the ability to steward the organ effectively is a necessary floor for listing. Usually, this psycho-social assessment addresses such questions as whether the potential recipient is able to comply with a follow-up treatment regimen, has the appropriate social support necessary to assistant with aftercare and appointments, and is unlikely to inflict additional damage on a new organ (such as through a relapse on alcohol or a repeat suicide attempt). But a crucial (although too rarely discussed) element in this process is ensuring that the potential recipient possesses the financial resources to help the organ survive. Otherwise, an organ will be “wasted” while another potential recipient will be denied a chance at life.
Nearly all heart transplant recipients have health insurance. A 2003 study reported that only 0.3% of cardiac transplant patients lacked such insurance (1). In fact, Spectrum Health is far from an outlier in requiring potential recipients to establish financial means; according to Thibodeau et. al., 84% of transplant programs require insurance to list a candidate—while for those that do list uninsured patients, 81% require “a large amount of money upfront” (2). The median figure was $200,000 in 2013 (3). Many state Medicaid programs do not cover certain transplants. In one high profile case, Eric De La Cruz of Nevada, the sister of former CNN newscaster Veronica De La Cruz, was denied coverage for a heart transplant by Nevada Medicaid—which only covered the procedure for patient until age twenty. Although his sister collaborated with the band Nine Inch Nails to raise nearly that sum, the patient was unable to acquire the secondary insurance policy demanded by the hospital in time—and De La Cruz ultimately died. For those without the ability to raise large sums quickly, the current process can prove an automatic death sentence. These include undocumented immigrants, who are largely excluded from Medicaid.
The problem is certainly a systemic one that demands redress from policymakers. But Spectrum Health should not be given a pass. In other cases, healthcare providers have agreed to offer free post-transplant treatment for life (4). Since these cases are relatively rare—there are simply not enough available organs to make them more frequent—a strong ethical argument (if not a legal one) suggests that Spectrum should have swallowed the $10,000 tab on a one-time basis. If each hospital adopted this approach, the costs would likely prove diffuse. Instead, as with multiple listings and repeat psycho-social evaluations at multiple centers, the rejection of patients like Martin merely creates the all-too-accurate impression of inequity in organ allocation, ultimately damaging the integrity of whole system. It’s also rather heartless.
References
(1) Herring AA, Woolhandler A, Himmelstein DU. “Insurance status of U.S. organ donors and transplant recipients: the uninsured give, but rarely receive” Int J Health Serv, 38 (2008), p. 641
(2) Thibodeau JT, Rao MP, Gupta CR, et al. “Health Insurance as a Requirement to Undergo Cardiac Transplantation: A National Survey of Transplant Program Practices,” Transplantation Proceedings, Volume 45, Issue 1, January–February 2013, Pages 360-363
(3) Thibodeau JT, Rao MP, Gupta CR, et al. “Health Insurance as a Requirement to Undergo Cardiac Transplantation: A National Survey of Transplant Program Practices,” Transplantation Proceedings, Volume 45, Issue 1, January–February 2013, Pages 360-363
(4) Grubbs V. Undocumented Immigrants And Kidney Transplant: Costs And Controversy. Health Aff (Millwood). 2014 Feb; 33(2): 332–335.