Case Studies
Case studies showcase real-world applications of policies and innovations, offering insights into improving outcomes and efficiency. They enhance problem-solving skills, highlight best practices, and engage through storytelling for education and transparency.
A Successful Initiative to Close the Inequity Gap in Organ Transplantation Among Immigrants in Illinois
Beverley
Ketel
, MD, FACS
, Chair, Board of Directors
, Illinois Transplant Fund
The Challenge
Prior to 2015, Illinois undocumented immigrants (noncitizen residents without legal immigration status: “noncitizens”) suffering from end stage organ failure would likely die before receiving an organ transplant. Lack of insurance for transplant costs and aftercare effectively bars patients from receiving needed transplants, even though transplants are lifesaving and generally cost saving. These barriers are especially prominent among noncitizens who do not qualify for federally subsidized healthcare and often lack financial resources to access private health insurance. More than 42% of noncitizens residents are uninsured, compared with 8% of US citizens. Illinois has >800,000 noncitizen residents. In Illinois, noncitizens with kidney failure are able to receive standard outpatient dialysis but before 2015 were not accepted for listing at Illinois transplant programs. While transplant centers were sympathetic to the plight of these individuals, none were willing to transplant patients with no insurance and no resources to care for the gift of donation. From 2011-2013 this barrier to transplantation became a front-page story as community activists staged hunger strikes and protests at transplant hospitals demanding organ transplants for noncitizens. Gift of Hope Organ and Tissue Donor Network, the local organ procurement organization (GOH), was also sympathetic to the plight of noncitizens and felt it indefensible to request organ donation in a community with no access to transplantation. In 2013, Dr. David Ansell, Senior Vice President for Community Health Equity at Rush University Medical Center, convened regional transplant centers, GOH, and community members. Their collective efforts led to inclusion of provisions in IL Senate Bill 741, to provide transplant coverage for low-income noncitizen kidney failure patients. Unfortunately, a change in administration led to excessive restrictions on eligibility and reimbursement making the legislation unusable. Only one patient was transplanted under its provisions. Transplant centers and GOH needed a workable solution. Leaders at GOH found that low-income noncitizen dialysis patients were routinely enrolled in private health insurance with premiums paid by American Kidney Fund (AKF), a non-profit organization committed to dialysis patient support. Utilizing the same concept, GOH created a 501c3 corporation in 2015, Illinois Transplant Fund (ITF), to provide health insurance premium support to noncitizen patients needing organ transplants who could not afford health insurance. With ITF in place, Illinois transplant programs began accepting noncitizen patients for listing. ITF, by creating a pathway for noncitizens to receive a transplant, abolished the longstanding inequity of access to transplantation.
The Approach
ITF covers health insurance premiums for individuals who are unable to pay (income below 200% of federal poverty level), do not qualify for government insurance programs, have lived in Illinois 3 or more years and have been accepted for listing by a transplant center. ITF covers 100% of monthly health insurance premiums for at least 36 months post-transplant, gradually transitioning patients off support during the fourth- and fifth-year post-transplant. Patients who are unable to transition for financial reasons and remain eligible by ITF criteria continue to be covered by ITF.
ITF has worked closely with dialysis providers and transplant centers to identify eligible patients, educate patients and their caregivers about ITF and assist patients’ enrollment.
Transplant centers embraced the work of ITF, recognizing ITF as a means of addressing healthcare inequity. To date, more than 95% of ITF patients identify as Latin. To benefit ITF patients and optimize transplant success, transplant centers improved their cultural proficiency by recruiting bilingual healthcare workers and expanding their social services. They welcomed referrals of patients previously excluded by their immigration status.
Patients who received transplants with ITF support, participate in outreach programs to increase awareness in Latinx communities about the work of ITF and the opportunity it has created for noncitizens to receive transplants.
ITF and GOH intensified education about organ donation and pursued donor registration in Latinx neighborhoods.
Pointing out the financial benefits to the community in getting patients off expensive dialysis and the elimination of a healthcare inequity, ITF gained support from Illinois legislators in 2020, to include provisions in Senate Bill 2294 to provide partial Illinois Medicaid coverage for noncitizens receiving kidney transplants. Coverage begins one-year post-transplant and continues if patients meet eligibility requirements. Unlike Senate Bill 741 in 2014, the 2020 legislation has proven to be beneficial and usable and provides adequate long-term coverage for patients. Approximately 75% of ITF patients are eligible for the coverage.
Cash donations from major hospital systems in Illinois, the Chicago Community Trust, GOH and individuals have provided over $4,000,000 for premium payment support for patients. Because GOH provides all manpower and ancillary services to run ITF, 100% of cash donations are used for patient insurance premium support.
The Results
ITF has successfully eliminated inequity in access to transplantation for Latino patients in Illinois. Between June 2015 and June 1, 2024, 560 patients have been transplanted with ITF support and ITF is currently supporting120 patients.
According to OPTN data, in 2014 Latino patients received only 15% of kidney transplants performed in Illinois while accounting for 30% of all patients on dialysis.
In 2021, 2022, 2023, Latino kidney transplants increased to 31.6%, 27.2% and 28.6% of total kidney transplants performed in Illinois respectively; numbers in line with the percentage of Latino patients suffering from kidney failure in Illinois.
Total number of kidney transplants in Illinois have increased by 95% from 2014 to 2023, while Latino transplants increased over 300%.
Between June 2015 and June 2024 ITF accepted 833 patients for support, 97% of whom were Latino. Average age was 43 years. Average time living
in Illinois was 19 years.
A recent analysis of patient outcomes for ITF patients shows graft survival rates slightly better than the national average.
Kidney transplantation is cost saving compared to ongoing dialysis. Using a conservative 8-year average life expectancy for kidney transplants, results in an estimated net savings of $321,000/patient over dialysis meaning ITF has saved the healthcare system and State of Illinois more than $20 million to date and that number will continue to grow as time passes and more patients are transplanted.
Insights & Lessons Learned
ITF is an innovative, one-of-a-kind program.
ITF ended inequity in organ transplantation for undocumented individuals in Illinois by transforming the landscape for impoverished noncitizen patients in need of organ transplants in the state. ITF’s impact is a testament to its unwavering commitment to ensuring fair and accessible transplantation for all, regardless of immigration status or income. To date, over 550 patients have received life-saving transplants through ITF’s efforts. Its impact is not only reflected in the lives saved, but also in creating a better response from health care professionals and legislators. ITF has caught the attention of several other states, and its model has potential for replication.