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W1898676027 abstract "Report From The Field Health AffairsVol. 34, No. 5: Variety Issue REPORT FROM THE FIELDIllinois Law Opens Door To Kidney Transplants For Undocumented ImmigrantsDavid Ansell, Kristen Pallok, Marieli D. Guzman, Marycarmen Flores, and Jose Oberholzer Affiliations David Ansell ( [email protected] ) is a primary care physician in the Department of Internal Medicine and senior vice president for system integration, both at Rush University Medical Center, in Chicago, Illinois. Kristen Pallok is a medical student at Rush Medical College, in Chicago. Marieli D. Guzman is a research assistant in the Department of Preventive Medicine at Rush University Medical Center and a matriculating medical student. Marycarmen Flores is a senior at Bates College, in Lewiston, Maine, and a former summer health disparity intern at Rush University Medical Center. Jose Oberholzer is chief of abdominal transplant surgery in the Department of Surgery, College of Medicine, the University of Illinois at Chicago. PUBLISHED:May 2015Free Accesshttps://doi.org/10.1377/hlthaff.2014.1192AboutSectionsView PDFPermissions ShareShare onFacebookTwitterLinked InReddit ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsDownload Exhibits TOPICSOrgan transplantationUninsuredImmigrantsAccess to careDialysisKidney diseaseMedicaidLegislationPremiumsPharmaceuticals In the United States, ethical, legal, and regulatory guidelines dictate that medical need alone should determine how organs are allocated for transplant. Yet despite these guidelines, uninsured undocumented immigrants are routinely excluded from transplant lists. 1,2 Uninsured patients, regardless of their medical condition, are in most cases blocked from receiving a transplant because they are unable to pay for the surgery, postoperative care, and long-term immunosuppressive therapy. 3 Failure to obtain post-transplant medications could lead to graft rejection—an unacceptable outcome for the patient; the transplant center; and, given the national scarcity of organs, the transplant system as a whole. 4Consequently, thousands of uninsured undocumented immigrants with organ failure go without a potentially lifesaving transplant because they cannot ensure payment for either the transplant or the subsequent medications. As a result, some die. Those who have renal failure receive costly and morbid dialysis treatment paid for by states’ emergency dialysis programs, where they exist. Even those patients have shortened life expectancy, however.In Illinois, there is now another option. The confluence of community activism, physician advocacy, and state legislator engagement recently led to two novel legislative actions that provide a potential national model for the expansion of transplant services to the undocumented and uninsured.Illinois is the first state in the nation to provide coverage for kidney transplantation for undocumented immigrants. The first legislative action was Illinois Senate Bill 741, called the Comprehensive Medicaid Legislation, which passed the Illinois state legislature May 29, 2014. This was an omnibus bill that overhauled the Illinois Medicaid program, including language to provide kidney transplantation coverage to noncitizens receiving dialysis through the state-funded program. Coverage is under a special program run through the Illinois Department of Healthcare and Family Services, the same agency that administers the state’s Medicaid program.The second legislative action, Illinois House Joint Resolution 98, adopted May 21, 2014, created a legislative task force to study and make policy recommendations regarding transplantation access for the uninsured, including undocumented immigrants in Illinois with end-stage failure of all organs.As Chicago-based health care providers and students, including one transplant surgeon (Jose Olberholzer), a primary care doctor and former chief medical officer responsible for transplant oversight (David Ansell), and medical and premedical students (Kristen Pallok, Marieli Guzman, and Marycarmen Flores), we witnessed the inequities at the heart of the old system and, in collaboration with state policy makers and community leaders, advocated for policy changes. We describe those efforts in this article.Inequity In Access To Transplant Services As of September 2014, there were 123,175 people in the United States waiting to receive a lifesaving organ transplant, and over 80 percent of them were waiting for a kidney transplant. 5 The National Organ Transplant Act of 1984 was passed by Congress to address concerns that unfair organ allocation, based on financial status and not medical need, would discourage organ donation in the United States. The act authorized the health and human services (HHS) secretary to establish the US Task Force on Organ Transplantation, which was charged with making recommendations to Congress for transplant care in the United States. The act also authorized the HHS secretary to establish a national Organ Procurement and Transplant Network. In 1986 HHS awarded to the United Network for Organ Sharing, a nonprofit agency, the contract to be the oversight agency for the national Organ Procurement and Transplant Network. The United Network for Organ Sharing and the Organ Procurement and Transplant Network together guide US transplant policy, based on the recommendations of the federal task force. 6 The rationale for the establishment of a national transplant network was the recognition that organs are scarce national resources. As the oversight bodies for transplantation in the United States, the two networks are responsible for ensuring that the system of organ allocation is managed based on medical criteria that are publicly stated and fairly applied. 7 The recommendations of the federal task force and the policies of the two networks have emphasized that organs should be distributed in a just and equitable manner to people who are medically eligible. 6,7 The task force acknowledged the importance of society’s social commitment to fairness, which means that all medically eligible people should receive the transplants they need, without having their income status considered. 6 In fact, the system of altruistic organ donation in the United States is predicated on donors’ trust that organs will be allocated based on medical need and not financial status. 1 In practice, as noted above, the uninsured—who are often members of minority groups 8 —are routinely denied access to transplants because of their financial status. 1 A review of records at a Northern California hospital for the period January 1, 2007–June 30, 2009, found that 27 percent of the observed organ transplant evaluations described the restriction of transplant-related treatment for reasons having to do with finance or insurance. 3 Other studies have suggested that 13–15 percent of people with end-stage heart failure could benefit from a transplant but are unable to receive one because of the lack of insurance. 1 In a 2009 survey of all 254 US transplant centers, 67 percent of the centers reported that they frequently or occasionally kept patients off a waiting list because they would not be able to afford post-transplant medication. 9 However, these numbers are likely underestimates, because many patients never make it from diagnosis to waiting list evaluation for financial or other reasons. 2 Most transplant centers contend that they cannot afford to provide long-term, uncompensated care for high-cost transplant patients. Direct surgical charges plus the charges for extensive follow-up care and monitoring are estimated to be over $300,000 for kidney transplant surgery and are even higher for liver, heart, intestine, and lung transplant surgery. 10 These costs can increase if a patient has complications. In addition, critical immunosuppressant medication, needed throughout the lifespan of the transplanted organ, can cost $18,000–$30,000 per year, depending on the organ. 1,10,11 As a result, transplantation can be a sizable financial stress, even for patients with a middle-class income and insurance. In addition to disparities based on insurance status, there are racial, ethnic, and income disparities in who progresses to receiving a transplant in the United States. 12–16 African American and Hispanic patients remain underrepresented on kidney waiting lists, relative to the composition of the population with chronic kidney disease. 12–16 African Americans are less likely than whites to be referred for the initial evaluation of transplantation; to be placed on the transplant waiting list; and to receive a transplant, even if they express a desire to receive one instead of continuing lifelong dialysis. 13,15,16 In addition, compared to white patients, minority patients are less likely to complete their transplant evaluations and less likely to become candidates for a transplant. 2,16 The reasons for these racial and ethnic gaps are multifactorial and include socioeconomic, geographical, and personal factors. However, the facts are indisputable: Proportionately fewer African Americans and Hispanics receive transplants than whites. 12–16 Adding to these disparities are the unique obstacles faced by the 6,000 undocumented immigrants estimated to have end-stage renal disease in the United States. 17 Many of these people have neither the financial resources nor access to public or private insurance to pay for transplantation or other health care services. Medicare’s End Stage Renal Disease Program, authorized by Congress in 1972, allows all US citizens with advanced kidney failure to qualify for Medicare or Medicaid to defray the related high costs. However, noncitizens are excluded from these benefits. 17–19 And the Consolidated Omnibus Budget Reconciliation Act (COBRA) of 1986 explicitly prohibits the use of federal funds to cover undocumented immigrants for nonemergency services such as dialysis or transplants. 17,19 Some states have established programs to fund emergency dialysis for uninsured people with end-stage renal disease who do not qualify for Medicare or Medicaid. 18 Illinois began providing dialysis coverage using state funds under the State Chronic Renal Disease Program that was established in 1967 for uninsured patients who did not qualify for Medicaid. 20 However, these state-funded dialysis programs do not pay for transplantation. For patients with renal failure, a kidney transplant represents the only path to full recovery. Yet uninsured undocumented immigrants—including those receiving state-funded dialysis—have effectively been denied access to transplant services because of their inability to obtain medical insurance.The Case For Covering Transplants For Undocumented ImmigrantsUndocumented immigrants represent a special class of the uninsured. Some people contend that undocumented immigrants should not have equal footing with US citizens on transplant waiting lists. However, several factors suggest that a citizenship-blind process of choosing who gets evaluated and placed on a transplant waiting list is necessary. First, undocumented immigrants contribute to the US economy, including the Social Security and Medicare programs—from which they will likely derive little benefit. 21 Second, the National Organ Transplant Act of 1984 and policies of the United Network of Organ Sharing and the Organ Procurement and Transplant Network are explicit that medical need should guide transplant decisions. There are no legal or regulatory prohibitions against undocumented immigrants’ receiving transplant care. Third, in one survey, 60 percent of undocumented immigrants with end-stage kidney disease reported that they had least one willing organ donor. 22 If that estimate is correct, many of these patients could receive a transplant without joining a waiting list or reducing the number of organs available to other patients. Finally, systematically denying the uninsured access to a transplant is especially troublesome when one considers that the uninsured, including undocumented immigrants, donate a disproportionate number of transplanted organs in the United States. Studies estimate that the uninsured receive fewer than 1 percent of all organs 1,23 but account for approximately 20 percent of all organ donors. 1,23 The most recent study, from the Chicago area, reported that 30 percent of transplanted organs were donated by the uninsured. 24 Comprehensive data on the citizenship status of organ donors do not exist. Nonetheless, in the Chicago study, 3 percent of organ donors were noncitizens, all of whom were uninsured. 24 A transplant system that allows people to donate to a pool of resources that they cannot draw from is inherently flawed. What is more, this inequality in organ allocation could undermine the viability of the system as a whole, by giving reluctant donors a reason not to donate. It has been reported that people who believe that organ allocation is unfair or who are unsure of its fairness are less willing to donate than people who believe that it is fair. 25 Perhaps most convincing for people concerned about the costs of transplantation and their burden on the state is the fact that the economic break-even point for a kidney transplant, compared to the cost of dialysis, is 1.5–2.7 years. 26 In other words, for every patient who receives state-funded dialysis for at least two years and nine months, the state would have saved money if that patient had received a transplant instead. Translating Protests Into Law In 2011, 2012, and 2013, demonstrators from the Our Lady of Guadelupe Anglican mission in Chicago held a series of protests directed against Chicago transplant centers, demanding that the centers provide transplants for uninsured undocumented immigrants. Some demonstrators held hunger strikes, and some were arrested while protesting at transplant centers. Their efforts attracted local and national publicity. 27 In response, some transplant centers in Chicago began to offer transplants to undocumented immigrants case by case. 28 Then, in August 2013, as the protests continued, one of the authors of this article (Ansell) invited representatives of regional transplant centers; Gift of Hope, the local organ procurement organization; and the Mexican consulate, as well as state legislators and community members, to a meeting at Rush University Medical Center in Chicago. There, representatives from six of the seven regional transplant centers listened to the concerns of community members and discussed potential solutions. Legislation To Fund Kidney Transplants For Undocumented ImmigrantsThe window of opportunity to get state funding for kidney transplantation for undocumented immigrants was created by the overhaul of the Illinois State Public Aid Code in 2014, which was set in motion by the expansion of Medicaid under the Affordable Care Act (ACA). SB 741, mentioned toward the beginning of this article, was the legislative vehicle that allowed Illinois to extend Medicaid coverage to newly eligible low-income adults, using $400 million in new federal Medicaid funding provided under the ACA. SB 741 had widespread support among all constituencies.As the legislation was being written, one of the authors of this article (Oberholzer) worked with Assemblywoman Cynthia Soto, a member of the Illinois General Assembly’s Latino Caucus, to craft language that would become the basis for section 5-5e of SB 741. This section went beyond the ACA’s Medicaid expansion to fund kidney transplantation for noncitizens using state funds. Kidney transplants were identified as the focus of this section of SB 741, because—as the legislation noted—a case could be made that this would be an “appropriate, cost effective alternative to renal dialysis.” Soto was able to get bipartisan support for the provision because, as she argued, successful transplantation for undocumented immigrants would ultimately decrease the cost of the state’s emergency dialysis program. “When you are receiving dialysis and the state is paying $80–85,000 a year, it just makes more sense for the state to spend $30–45,000 for a transplant. You are not spending all that money on dialysis, but you are curing someone,” Soto said. 29 Another reason why section 5-5e of SB 741 might have garnered widespread support was an unrelated 2014 Illinois initiative—the passage of SB 957—that provided undocumented immigrants in Illinois with state-issued drivers’ licenses. 30 Jesse White, Illinois’s secretary of state, launched a public campaign in 2014 to encourage these new undocumented immigrant drivers to donate organs—a campaign that, if successful, could lead to more organs being available for all potential recipients. 31 As part of the campaign, White publicly promised to work on behalf of undocumented immigrants who needed transplants. 31 The juxtaposition of the campaign for organ donation by undocumented immigrants with Soto’s advocacy for kidney transplant funding for undocumented immigrants was coincidental but possibly increased the support for section 5-5e of SB 741. The rules governing the state’s new entitlement to kidney transplants were proposed October 14, 2014 (two weeks after the law went into effect), by the Illinois Department of Healthcare and Family Services. They have now been finalized. 32 The rules include the following points. The benefit will be available only to uninsured patients with end-stage renal failure who are in the state-funded dialysis program; thus, patients with end-stage kidney disease who are not yet on dialysis are excluded. The benefit will take the form of a payment from state public aid funds administered by the Illinois Department of Healthcare and Family Services to transplant centers to cover all pre-transplant, donor, and post-transplant costs. There will be a separate pharmacy benefit to pay for lifetime immunosuppressive medications. The program is not intended to cover any expenses related to other health care. The benefit will require patients to renew coverage annually, with proof of Illinois residence. And finally, patients who become ineligible for transplantation or move out of state will no longer be eligible for the benefit. 32Transplant centers in the state have reacted to the new law with caution. First, some centers have objected to the fact that only undocumented immigrants who are already receiving emergency dialysis are eligible for the benefit. Second, the proposed reimbursement to transplant centers is lower than the total cost of performing a kidney transplant and about $15,000 less than current Medicaid kidney transplant reimbursement rates.Third, the proposed bundled payment does not have an end date. Similar bundled payments from other insurers typically cover costs for ninety days to one year after a kidney transplant. If transplant care is complicated and requires more frequent hospitalizations than is routine, the state expects the single payment to cover all clinical contingencies as far into the future as they occur. Fourth, there is no stop-loss provision to pay for care, if there were to be catastrophic complications of a kidney transplant requiring significant posthospital treatment.Finally, the provisions of section 5-5e in SB 741 explicitly limit payments to transplant services. Routine primary and preventive care for undocumented immigrant transplant patients is not included in the benefit.To date, at least one kidney transplant has been performed under the new law, since the payment rules were published. Some transplant centers have created waiting lists, pending clarification regarding the stability of long-term funding of section 5-5e of SB 741. Prompting this restraint by the transplant programs, the new Republican governor of Illinois, Bruce Rauner, has included the elimination of funding for this program on a laundry list of proposed cuts to public aid funding. However, the Democratic Party controls the Illinois legislature and has a veto-proof majority. And the Latino Caucus of the Illinois General Assembly has made the continued funding of section 5-5e a critical part of its budget agenda.The fate of program funding will not be known until the end of the legislative session in June 2015. Meanwhile, Gift of Hope, the local organ procurement organization, has encouraged local transplant programs to give transplants to undocumented immigrants covered by this law in the current funding cycle.Other InitiativesThe second piece of legislation mentioned toward the beginning of this article, HJR 98, was a resolution crafted by another member of the Latino Caucus, Edward Acevedo, working with one of the authors of this article (Ansell). HJR 98 authorized the establishment of the Illinois Taskforce on Organ Transplantation for the Uninsured to address the broad issues associated with transplantation for all uninsured people, including noncitizens.The task force, consisting of legislators from both parties, was convened in October 2014 and directed to report its recommendations regarding the funding of transplant care for the uninsured to the state legislature. The task force has met twice, with the goal of proposing new legislation in the 2015 legislative session to address issues regarding the funding of transplantation for the uninsured who are not covered under SB 741. At the time of this writing, no legislative language had been proposed. In addition to these two legislative initiatives, the American Kidney Fund in Illinois, through its Health Insurance Premium Program, is helping many undocumented immigrant patients with end-stage renal disease obtain commercial health insurance by paying premiums while the patients are on dialysis. 33 These premiums, which the patients could not afford to pay themselves, are being funded by dialysis companies. The insurance allows these patients to receive transplant evaluations. However because support for the insurance premiums terminates when the patient gets a transplant, the long-term ability of these patients to pay for post-transplant care is in doubt. And because of the restrictions in SB 741, if undocumented immigrants receive this commercial insurance support for a transplant, they are ineligible for the state-funded transplant program.Gift of Hope has proposed establishing a 501(c)(3) company that would pay premium support to post-transplant patients in Illinois who lack the means to pay premiums themselves (Kevin Cmunt, CEO, Gift of Hope, personal communication, March 3, 2015). Meanwhile, some undocumented immigrants with insurance supported by the American Kidney Fund have received transplants or are being evaluated for a transplant.ConclusionBoth section 5-5e of SB 741 and HJR 98 are the result of a three-year effort that brought together community activists, physician leaders, and key legislators, all of whom shared an understanding that the current system for transplant access was unfair and needed legislative solutions. SB 741 is an imperfect piece of legislation. Nonetheless, its expansion of coverage for kidney transplantation for uninsured undocumented immigrants in Illinois is an important step in providing access to care for a group of patients previously excluded from transplant care. Gift of Hope, the organ procurement organization in Illinois, is optimistic that SB 741 will expand the organ donor pool in Illinois, as potential donors who had been reluctant to donate because of transplant inequity may become willing to donate. This legislative effort, as well as the insurance premium program funded by the American Kidney Fund 33 in Illinois, could serve as models for the nation of novel ways to increase equity in access to transplant care for uninsured undocumented immigrants. We also hope that the Illinois Taskforce on Organ Transplantation for the Uninsured will stimulate public dialogue in the state on the critical issue of funding long-term transplant care for the uninsured, ultimately generating the support required to enact additional legislative initiatives.Finally, it is important to see this progress in the broader context of a fragmented US health care system that struggles to ensure access to care for everyone. Coverage for expensive transplant care is just the tip of the iceberg when it comes to improving access to health care for the eleven million undocumented immigrants in the United States not covered by the Affordable Care Act—as well as people left uninsured by the limitations of the Medicaid expansion and the health insurance Marketplaces. But for noncitizens receiving emergency dialysis in Illinois, SB 741 and HJR 98 offer a glimpse of hope where there had been none.ACKNOWLEDGMENTSThe authors acknowledge Hannah Decker for her research assistance and insight; Kevin Cmunt, CEO of the Gift of Hope, for his leadership in improving access to transplantation; Illinois State Representatives Cynthia Soto and Edward Acevedo for listening to the voices of a community in need and translating what they heard into legislative action; Jeff Levin-Scherz of the Harvard School of Public Health for his guidance; and Enrico Bendetti, chair of the Department of Surgery and a transplant surgeon at the University of Illinois, for his encouragement and compassion. The authors also acknowledge the family of Sarai Rodriguez, a twenty-five-year-old with Wilson’s disease who died in the summer of 2013 after being denied a transplant evaluation because of her citizenship status. The opinions expressed here are those of the authors and do not necessarily reflect the views of their respective colleges and universities.NOTES1 King LP , Siminoff LA , Meyer DM , Yancy CW , Ring WS , Mayo TW , et al. Health insurance and cardiac transplantation: a call for reform . J Am Coll Cardiol . 2005 ; 45 ( 9 ): 1388 – 91 . Crossref, Medline, Google Scholar 2 Tuttle-Newhall JE , Rutledge R , Johnson M , Fair J . A statewide, population-based, time series analysis of access to liver transplantation . Transplantation . 1997 ; 63 ( 2 ): 255 – 62 . Crossref, Medline, Google Scholar 3 Laurentine KA , Bramstedt KA . Too poor for transplant: finance and insurance issues in transplant ethics . Prog Transplant . 2010 ; 20 ( 2 ): 178 – 85 . Crossref, Medline, Google Scholar 4 Gill JS , Tonelli M . Penny wise, pound foolish? Coverage limits on immunosuppression after kidney transplantation . N Engl J Med . 2012 ; 366 ( 7 ): 586 – 9 . 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Illinois Register [serial on the Internet]. 2014 [cited 2015 Mar 12 ]. Available from: https://www2.illinois.gov/hfs/SiteCollectionDocuments/118700ER.pdf Google Scholar 33 American Kidney Fund . FAQs about HIPP [Internet]. Rockville (MD) : The Fund ; c 2015 [cited 2015 Mar 12 ]. Available from: http://www.kidneyfund.org/patient-programs/hipp/faqs-about-hipp.html Google Scholar Loading Comments... Please enable JavaScript to view the comments powered by Disqus. DetailsExhibitsReferencesRelated Article MetricsCitations: Crossref 14 History Published online 1 May 2015 Information Project HOPE—The People-to-People Health Foundation, Inc. ACKNOWLEDGMENTSThe authors acknowledge Hannah Decker for her research assistance and insight; Kevin Cmunt, CEO of the Gift of Hope, for his leadership in improving access to transplantation; Illinois State Representatives Cynthia Soto and Edward Acevedo for listening to the voices of a community in need and translating what they heard into legislative action; Jeff Levin-Scherz of the Harvard School of Public Health for his guidance; and Enrico Bendetti, chair of the Department of Surgery and a transplant surgeon at the University of Illinois, for his encouragement and compassion. The authors also acknowledge the family of Sarai Rodriguez, a twenty-five-year-old with Wilson’s disease who died in the summer of 2013 after being denied a transplant evaluation because of her citizenship status. The opinions expressed here are those of the authors and do not necessarily reflect the views of their respective colleges and universities.PDF downloadCited byEnd Stage Kidney Disease in Non-citizen Patients: Epidemiology, Treatment, and an Update to Policy in Illinois13 November 2021 | Journal of Immigrant and Minority Health, Vol. 24, No. 6Undocumented donors: how driver’s licenses can help solve the U.S. organ shortage2 November 2021 | Journal of Public Health Policy, Vol. 42, No. 4Outcomes of Kidney Transplant in Undocumented ImmigrantsJAMA Surgery, Vol. 156, No. 11Health Policy Challenges Posed By Shifting Demographics And Health Trends Among Immigrants To The United States Study examines examine recent trends in immigrant health and health care after the Great Recession and the national implementation of the Affordable Care Act.Arturo Vargas Bustamante, Jie Chen, Lucía Félix Beltrán, and Alexander N. Ortega6 July 2021 | Health Affairs, Vol. 40, No. 7Access to Transplantation for Undocumented Pediatric Patients1 July 2020 | Pediatrics, Vol. 146, No. 1Barriers to providing optimal dialysis care for undocumented immigrants: Policy challenges and solutions7 January 2020 | Seminars in Dialysis, Vol. 33, No. 1Hemodialysis care for undocumented immigrants with end-stage renal disease in the United StatesCurrent Opinion in Nephrology and Hypertension, Vol. 28, No. 6Providing Comprehensive Health Care for Undocumented People in the United StatesJAMA Internal Medicine, Vol. 179, No. 2Advocacy for Health Care Policy in Case Management: An Ethical MandateProfessional Case Management, Vol. 23, No. 5Clinicians' Perspectives on Providing Emergency-Only Hemodialysis to Undocumented Immigrants22 May 2018 | Annals of Internal Medicine, Vol. 169, No. 2Caring for Undocumented Immigrants With Kidney DiseaseAmerican Journal of Kidney Diseases, Vol. 71, No. 4Association of Citizenship Status With Kidney Transplantation in Medicaid PatientsAmerican Journal of Kidney Diseases, Vol. 71, No. 2Renin-angiotensin system blockers and residual kidney function loss in patients initiating peritoneal dialysis: an observational cohort study17 June 2017 | BMC Nephrology, Vol. 18, No. 1New Opportunities for Funding Dialysis-Dependent Undocumented Individuals30 August 2016 | Clinical Journal of the American Society of Nephrology, Vol. 12, No. 2" @default.
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W1898676027 title "Illinois Law Opens Door To Kidney Transplants For Undocumented Immigrants" @default.
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