On Christmas Eve 2011, protesters from a local church marched to the entrance of our hospital, Rush University Medical Center in Chicago. They demanded we provide organ transplants for sick members of their congregation. We invited them in and listened to their gut wrenching stories. George, twenty-two, was brought to the United States as a six-month-old. He developed renal failure at age sixteen while covered under the Children’s Health Insurance Program. Now he was uninsured, on dialysis and refused a transplant evaluation at the same institution that treated him as a child. Another undocumented immigrant, Martin, was twenty-six. He too was uninsured and on dialysis.
Chicago has six adult transplant centers. Initially none would evaluate George or Martin for transplantation because they were uninsured. In the Narrative Matters essay, “Undocumented Immigrants And Kidney Transplant: Costs And Controversy,” published in the February issue of Health Affairs, Vanessa Grubbs tells a similarly heartfelt story of a patient in need of a transplant: Mr. Rojas. George, Martin and Mr. Rojas are not US citizens, but it was their lack of health insurance that kept transplantation out of reach. Foreign-born immigrants always have access to a transplant evaluation (the prerequisite for organ transplant) if they have insurance or the cash to pay.
In theory, the organ allocation system in the United States is based on justice and equity. The National Organ Transplant Act (NOTA) was passed in 1984 to create a fair system of organ transplantation in the United States. A federal task force, created by the act, was charged to design an organ allocation system “based on medical criteria that are publicly stated and fairly applied.” The task force emphasized that organs should be distributed to those eligible “regardless of their ability to pay.” Both NOTA and the bylaws of the United Network for Organ Sharing, the nonprofit organization that manages the national transplant network, require that need, not financial or citizenship status, guide transplant allocation decisions. Undeniably, the system of altruistic donation is only viable if a donating individual believes organs are allocated fairly.
In reality, fair allocation of organ transplants is unrealized. The uninsured are systematically denied access to transplant evaluation. If you cannot be evaluated, you have no chance to get on a transplant wait list. Policies at almost all US transplant centers effectively violate the spirit of the NOTA and UNOS transplant guidelines by excluding the uninsured, often members of underrepresented minority groups, from the evaluation process.
The rationale for this restriction of transplantation for the uninsured is multifactorial. Most institutions contend they cannot afford to provide uncompensated care for high-cost transplant patients. However, the restriction of transplant access also stems from the desire to avoid graft rejection, which is likely to occur if the patient is unable to comply with costly anti-rejection drug regimens and follow-up care. Direct surgical costs, as well as the costs of extensive follow-up care and monitoring, are estimated at $100,000 in the first year after transplant surgery, which can increase depending on the organ and complications. Critical immunosuppressant medication, taken for the lifespan of the organ, can cost between $10,000 and $30,000 annually, studies show. Even for patients with insurance and adequate income, transplant can be a sizeable financial stress. If a patient is uninsured, the costs associated with being a good steward of the organ are assumed to be unmanageable.
The denial of transplantation to the uninsured is more troublesome when one considers the uninsured donate a disproportionate number of organs. Studies estimate the uninsured receive less than 1 percent of all organs but comprise almost 20 percent of all organ donors—a dramatically disproportionate share. Recent data shows that 30 percent of organ donors in Chicago are uninsured and 3 percent are non-citizens. Fairness would demand a better system.
Our experience in Chicago could point the way for a solution. Pressure from community groups allowed George and Martin to receive kidney transplants. George received a kidney donated from his mother, while Martin received a kidney donation at our center from his brother. Pharmaceutical assistance programs, covered the cost of transplant anti-rejection medications. Now, both men are thriving and attending college. We are optimistic that with access to medications they will avoid organ rejection, though notably both remain uninsured. Typical differences in graft survival between the uninsured and those fully insured disappear when the uninsured participate in an indigent drug program that covers the cost of immunosuppressant medications. At our transplant program, we have experience with a handful of transplants (liver, kidney and bone marrow) involving uninsured patients. In each instance, our patients were able to secure immunosuppressive medications from indigent drug programs.
It’s time for a systematic national approach to this problem. We believe every transplant program should set aside a set number of transplant evaluations for the uninsured. The focus, at first, should be on kidney transplantation, with a priority for patients with family members or friends who could be living donors. To avoid medical tourism, a five-year state residency could be required for non-citizens seeking a transplant. The pharmaceutical industry could be asked by the transplant community to provide anti-rejection medications for these uninsured patients through their indigent pharmaceutical programs.
Federal drug programs could help provide a means for the uninsured transplant patients to receive medications, as well. Longer term, states should pass laws to fund these transplants in full. The cost benefit to provide transplants instead of maintaining a person on lifelong dialysis is huge. Such a bill has been proposed in 2014 in Illinois. As inequity in transplant access is often cited as a reason for non-participation in organ donor programs, it is even possible that a national program that begins to provide transplants for uninsured patients will lead to more organ donation. More organs in the system lead to shorter wait times for everyone.
Transplant centers are a scarce national resource. Organs are even rarer. But when it comes to the uninsured (and undocumented), as Dr. Grubbs points out, fairness is almost never achieved. We can do better.