Immigrants face barriers to transplant despite improved access in Illinois

ByJulie S. Keenan

Fact checked byGina Brockenbrough, MA

Key takeaways:

Immigrants without permanent legal status reported policy gaps and communication barriers in care as main barriers to transplant access.
Stakeholders reported hardships related to treating these patients.

Perspective from Katherine Rizzolo, MD

Although immigrants lacking permanent legal status have access to kidney transplantation in Illinois, these patients and stakeholders reported remaining barriers, according to data published in Kidney Medicine.

For example, communication barriers, the devastation of a kidney disease diagnosis and policy gaps were highlighted as obstacles patients still faced.

Infographic showing main themes of study — Data were derived from Gely YI, et al. *Kidney Medicine.* 2023;doi:10.1016/j.xkme.2023.100644.

“In Illinois, patients with kidney failure can qualify for transplants, though little is known about the experiences of noncitizen patients who have become eligible for a kidney transplant,” Yumiko I. Gely, BS, BHS, from Rush University Medical Center, and colleagues wrote. “To help patients receive transplants, the nonprofit the Illinois Transplant Fund (ITF) provides health insurance premium support for patients who do not qualify for publicly funded health insurance and are unable to pay the premiums for private health insurance.”

In a qualitative study, researchers interviewed 36 participants (five physicians, four community outreach stakeholders, four transplant center professionals, 16 patients and seven partners) to determine how access to transplantation affects life for patients, family members, providers and the health care system. Participants were transplant and immigration stakeholders or patients who received assistance through the Illinois Transplant Fund.

The semi-structured interviews were conducted virtually and focused on “noncitizens without legal documentation status” given that the policies in Illinois allow for transplantation among this patient population. Stakeholders were asked about their experiences with these patients, knowledge of the ITF, views on health care policies and health outcomes of and barriers faced by such patients with kidney failure.

Patients were asked about their overall experience with kidney failure, including their experience with ITF.

After coding the interview transcripts, researchers used thematic analysis methods with an inductive approach to examine the themes.

Overall, researchers identified the main themes of the interviews as devastation from kidney failure diagnosis, resource needs for care, communication barriers to care, importance of culturally competent health care providers, negative impacts of policy gaps, new chance at life after transplant and recommendations for improving care.

Interviews revealed many of these patients face further barriers to care, even with insurance coverage, such as the inability to qualify for assistance programs, deportation fears, transportation and financial hardship.

According to the study, many of the patients interviewed were examples of success stories, whereas stakeholders “described hardships in providing care in an environment characterized by resource constraints and policy gaps.”

Gely and colleagues wrote, “In states where emergency-only dialysis is the sole option for undocumented patients with kidney failure, clinicians face moral distress, burnout, and emotional exhaustion from not being able to provide standard of care, witnessing needless suffering and overextending themselves to bridge gaps in care.”

Overall, researchers observed negative impacts of access to care and health care policy gaps when interviewing these patients and stakeholders involved with kidney transplant in Illinois.

Perspective

Katherine Rizzolo, MD

Undocumented people in the U.S. are ineligible for federal insurance, including provisions under the Affordable Care Act and Medicare. There are between 5,500 and 8,857 undocumented immigrants with kidney failure in the U.S. Due to the restrictions on federal insurance, undocumented people are one of the largest uninsured groups in the U.S. For people with kidney failure, this can lead to lack of access of life-saving therapies for kidney replacement therapy, such as dialysis and transplant. There are 20 states that provide access to dialysis for undocumented immigrants state-wide, and only five states that provide access to kidney transplantation.

Kidney transplantation is considered the gold standard for kidney failure treatment, as it is associated with improved mortality and quality of life. There is no barrier to transplantation for undocumented individuals at the level of the United Network of Organ Sharing or Organ Procurement Transplantation Network; undocumented people are eligible to be considered for a deceased and living donor transplantation in the U.S. However, the major barriers are insurance and financial barriers due to restrictions on federal insurance. Further barriers to transplantation include lack of adequate transplant education and lack of culture concordant care. Despite this, numerous studies have demonstrated undocumented transplant recipients have excellent transplant outcomes.

In the April issue of Kidney Medicine, Gely and colleagues examine the experience of kidney transplantation for undocumented immigrants in Illinois. Illinois is one of the five states that have state-wide access to kidney transplantation, which is funded by Medicaid and through a charity arm, the Illinois Transplant Fund. This policy was created in 2014, due to a wave of advocacy in part spurred from an initiative allowing undocumented immigrants drivers licenses, and thus, become organ donors. The policy was created to allow equity for people who could donate organs to this country but would otherwise be ineligible to receive them due to insurance restrictions and is open to individuals who are low income, residents of Illinois and must be receiving dialysis via Emergency Medicaid.

Gely and colleagues interviewed 16 patients, seven caregiver partners and 13 stakeholders in kidney transplant regarding their transplant experience. The patient cohort largely identified as Hispanic or Latino, mostly men, and mostly with less than a high school education. Participants noted multiple barriers in communication in terms of language, mistrust and fear of deportation, and low health literacy regarding the complexities of health care system in the U.S. Stakeholders echoed this concern, noting that cultural competency was important for forming trusting relationships with transplant candidates. In addition, participants reported numerous structural barriers to transplantation beyond insurance, such as transportation barriers for many appointments required for transplant evaluation. While citizens are often eligible for state or municipal transportation services, this is a service that often precludes undocumented individuals. In addition, gaps in policy included lack of coverage for outpatient treatment post-transplant.

Overall, these findings reflect that barriers to transplant care for undocumented uninsured individuals extend beyond insurance and financial barriers. Indeed, previous findings have shown Latinx undocumented individuals do not receive adequate transplant education and may be unaware that patients on dialysis can receive a kidney transplant. A study in 2012 with undocumented people receiving dialysis in New York found that while undocumented people were interested in transplantation, they underestimated the degree of financial/insurance needs that many transplant centers require. In addition, many Latinx people express fear of transplant surgery, rejection and concerns for poor life expectancy. Further, amongst undocumented people specifically, there is mistrust of the medical community due to fear of deportation.

Several transplant centers in the U.S. have developed culture-concordant transplant centers addressing some of these needs for early education and adequate patient education and communication. For example, the Hispanic Transplant Center at Northwestern has demonstrated that language and culture concordant care has been associated with increased knowledge of living donation. In Colorado, the creation of a Hispanic Kidney Transplant Program was associated with higher referrals and evaluations of Spanish-speaking patients, and participants reported improved patient experience and education.

The findings from this study must be interpreted with caution. Currently only five states in the U.S. provide state-wide access to kidney transplantation for undocumented individuals. In the other 45 states, it is likely barriers to transplant care, including education, financial resources and other structural barriers, are higher. There are 30 states in which many undocumented people are ineligible for maintenance dialysis. In these states, undocumented individuals are only eligible for emergency dialysis or dialysis when critically ill, which has been associated with deleterious patient outcomes. Undocumented people receiving emergency dialysis report poor kidney disease education, including transplant education. Moreover, many transplant centers have expressed confusion regarding the guidelines for transplantation of non-citizens, which is more likely to occur in areas where undocumented immigrants are not commonly evaluated for transplant.

The argument for transplantation of undocumented immigrants is clear both fiscally and ethically: Transplantation is cheaper than dialysis, allows for higher quality of life and return to work, and barring organ transplantation for a group who donates organs to this country is unjust. Gely and colleagues illustrate the numerous benefits of transplantation in a state where transplantation access is provided and point out the additional needs in resources for true transplant equity. This example may serve to inspire and improve state-led efforts in other states hoping to better serve the undocumented population with kidney failure.

References:

Alvaro EM, et al. J Health Commun. 2010;doi:10.1080/10810731003753133.

Alvaro EM, et al. Prog Transplant. 2008;doi:10.1177/152692480801800406.

Ansell D, et al. Health Affairs. 2015;doi:10.1377/hlthaff.2014.1192.

Cervantes L, et al. JAMA Intern Med. 2017;doi:10.1001/jamainternmed.2016.8865.

Cervantes L, et al. JAMA. 2018;doi:10.1001/jamainternmed.2017.7039.

Cervantes L, et al. Am J Kidney Dis. 2021;doi:10.1053/j.ajkd.2021.11.006.

Eguchi N, et al. JAMA Netw Open. 2023;doi:10.1001/jamanetworkopen.2022.54660.

Gely YI, et al. Kidney Medicine. 2023;doi:10.1016/j.xkme.2023.100644.

Gordon EJ, et al. Prog Transplant. 2014;doi:10.7182/pit2014378.

Lange-Maia BS, et al. J Immigr Minor Health. 2021;doi:10.1007/s10903-021-01303-7.

Linden EA, et al. Am J Kidney Dis. 2021;doi:10.1053/j.ajkd.2012.05.016.