This is part two of our new series on public health. America offers citizens suffering from end stage renal disease (ESRD) comprehensive health coverage. However, kidney disease and ESRD in undocumented peoples present major financial and moral issues for American policy makers and care givers. Each state offers a different system to treat patients who are undocumented. Dr. Harford works at the University of New Mexico, which offers undocumented patients transplant and dialysis, as well as emergent care. This interview took place on the 15th of May in Milan, Italy.
Interview by Donatella Felice with Dr. Antonia Harford, Professor of Medicine, Division of Nephrology, Medical Director of Renal Transplant Services, University of New Mexico, Health Sciences Center.
F: Can you tell me a bit about the historical ethical issues that nephrology doctors have faced?
H: In the 70’s, there were death panels, where hospital administration and providers would sit on a panel and decide which patients could receive dialysis. There were a limited number of dialysis chairs, so the hospital community had to decide who would live and who would die by, who would be provided with dialysis. At the time that I went to medical school, in the late 70’s diabetics were not considered to be eligible for dialysis, and now the majority of patients, ie prevalent patients on dialysis actually have diabetes. So there has been an evolution of who is considered for dialysis since that, since the initiation of chronic dialysis in the early 70’s.
F: So what ethical issues would you say you face today, as verse as then, when you do your day-to-day work? In the New Mexico system do you face any ethical dilemmas or do you feel like the system works well in that regard?
H: One ethical dilemma in dialysis, nationally, relates to the dialysis of undocumented patients, so these are individuals who are resident in the United States but are not US citizens. In New Mexico especially we have a large population of undocumented patients who primarily are from Mexico, but also now, also are coming from Central America. The patients from Mexico belong to whose members have been coming backwards and forwards into New Mexico for centuries along the trade paths up from Mexico, and so there is a lot of connection between families in Mexico and families in New Mexico, and they travel backwards and forwards, now for their care, because dialysis is not available on a routine basis to all patients in Mexico. The patients who are part of these families who come into New Mexico to work, and have been resident in New Mexico for years, need dialysis. There has been problems providing this service for them, over the years in our hospital, which is a university medical center, which provides care for many indigent patients including patients who are undocumented. And one of the issues over the years has been how to best care for these patients. At this time we are able to provide dialysis care for them. However, their care is hampered by the fact that they often times do not have coverage for medications, and so if they undergo transplantation, which they are able to do at our center, so if they are interested in transplant and listed for transplant and receive transplant one of the major barriers for them is obtaining the immunosuppressant drugs after transplant, which are very, very expensive. So this is a great dilemma of weather they should go ahead and be transplanted, or whether one should withhold transplant because they don’t have the money to pay for the medications to maintain the allograft after they undergo this surgery.
F: Who pays for the transplants? Do they normally come through living donors? Though community networks?
H: Yes, they are able to obtain insurance in New Mexico: patients with ESRD who are undocumented or there is also some other patients who may not have worked and may not have paid into social security and so are not eligible for Medicare, they can be insured through the New Mexico State Insurance Board. So they have to pay a premium, which is subsidized based on their incomes, but they are able to get coverage through this program, which then enables them to undergo chronic dialysis as well as transplantation. Our state is unusual, some of the surrounding states do not have, for instance Colorado, does not have a similar program.
F: Do you think those type of programs encourage immigrants to move to New Mexico specifically or to move to the US in general?
H: That’s not been my experience. The patients that we, who one are eligible for this program have to be resident in our state. If you look at surveys that have been done of patients that are undocumented, as well as our experience at the University of New Mexico, these patients are long standing residents of our city and of our state. They have lived in New Mexico 10, 15, 20 years, before they become end stage. Often times, have not received a lot of appropriate medical care as they develop chronic kidney disease.
F: Obviously you wouldn’t want, if they brought in a universal plan, the state to go backwards. Do you have any recommendations or thoughts about ways that New Mexico or other states could move forward with a more logical or universal plan?
H: So the barriers in our state, and I think in the other states that provide this care, are the coverage for the medications. The medications on dialysis are specialized and they have complex other medical problems relating to their kidney disease, including a specific type of renal bone disease, and the medications for that are very expensive. They require specialized anti-hypertensive drugs that can be expensive. So those medications are expensive and are important for their overall health as a dialysis patient. Then post transplant the immunosuppressive agents which are the agents which suppress the immune system’s response to the allograft which is foreign, if they don’t take those medications, which can cost between 6 and 10 000 dollars a year at a minimum, if they don’t take them they will lose the graft. So we have to have a plan for how they are going to be able to afford those medications and the co-pays with a variety of different plans. I think that is the main areas that need to be addressed in a coherent, national way, so that we don’t waste the most precious resource of all, which is the allograft. It’s either a living donor, so its someone in their family who is giving part of themselves or it’s a deceased donor, where a family, when someone dies and is brain dead volunteers to give their organs. In either case this is the most precious gift of all, and the most precious resource, and it would be wasted if we cannot afford the immunosuppressives.
F: Would you say then, it’s not a viable solution to offer undocumented immigrants transplant unless it comes with support for the drugs and the care that is needed or accompanies it?
H: Ah, I have real personal trouble ethically and in every other way, not offering transplant to these candidates. They are younger, healthier, they work, and so in most ways they are perfect transplant candidates, and so my approach to this is always to consider them for transplant and to work with them as well as with very creative financial advisors and social workers to work out ways that we can get the immunosuppressants for them.
F: Do you believe then that, moving forward, it would be preferential for government and policy makers to hear more from physicians and patients? Is it necessary to gather more information or is there already a clear working plan that they could try to use nationwide?
H: More patient advocates, and more physician provider advocates, patient family advocates are needed at a national level. In the present political climate in the United States, particularly for undocumented patients, it’s a difficult issue.
Info-graphic was originally published here: https://www.usrds.org/adrhighlights.aspx