By Lana Schmidt, MBA, former home hemodialysis patient, current transplant recipient, AAKP National Board of Director
As an 18-year kidney patient warrior, I know firsthand what it is like to have too many antibodies and a very low chance, if ever, of receiving a kidney transplant. Throughout my journey with kidney disease and my pursuant of a transplant, many transplant centers told me there was not anything they could do for me except wait for that rare opportunity for a kidney match, so with that, I remained on dialysis for over 13 traumatic years.
Not willing to let my goal of a kidney transplant go, I consulted with a couple other transplant centers and they all agreed that the desensitization protocols (which aims to remove harmful antibodies from the blood stream) that are currently in place would not work on me as I had way too many antibodies, many unacceptable with a PRA (Panel Reactive Antibody) over 100% from being so sick on dialysis and needing over 20 blood transfusions.
As a kidney patient who suffered with high antibodies, it was difficult to mentally and emotionally wrap my head around the fact that because there are no medications or procedures to help with the high antibodies, I would be on dialysis until I die….a hopeless reality for fellow kidney patients who want a transplant and want to live.
After a lot of research, I met the Transplant Outreach Coordinator from the University of Illinois in Chicago and invited him to speak at a kidney support group meeting of which I was a part of. He shared the new techniques, interesting methods, and medications that were being used in clinical trials in transplants right here in my home state. After that, I then met with Dr. Enrico Benedetti, Head of Surgery, Transplant, who suggested I try a rather new drug, Eculizumab (Soliris), that would “suppress” my antibodies rather than remove them as desensitization would not work on my antibodies.
Even though the treatment was being used in clinical trials, it would be experimental for the transplant center because it would be the first time it would be used with a deceased organ donor. Previously, it had been used with a living organ donor. There was only one problem…..the treatment was not approved by Medicare and therefore I would have to pay for use of the medication–$110,000.00! Most people would give up at this point, but I believed that somehow, some way, the money would be there. After two years of a lot of persistence and phone calls, the funds for the transplant were approved from a state organization.
At this point, my body was really giving up. If it had not been for Dr. Benedetti from Chicago, it is very likely I would not be here today. After over 13 years on dialysis, using all the different modalities, I finally received a kidney transplant from the University of Illinois in Chicago with Dr. Benedetti using Eculizumab (Soliris). I was the first person at this transplant center to receive this experimental treatment with a deceased donor kidney. As of January 2021, I am now five years post-transplant.
Open the door to more research
This treatment strategy, along with many others, deserve to be explored in sensitized patients who have no other suitable alternatives to receiving a kidney transplant. My initial experience with this treatment has been very positive and it holds great promise for many others.
In the USA, approximately one-third of patients who are waiting for a kidney are considered sensitized and will have a difficult time of receiving a kidney match due to their high antibody level. Sadly, many of them will die before they a transplant match becomes available. Eculizumab (Soliris), and other treatments like this, could potentially help many kidney patients with high antibodies receive a transplant and have a new lease on life, but larger research studies are needed to prove the value of this treatment strategy.
Stop the suffering and premature dying
As kidney patients are uselessly suffering and prematurely dying, we as a community need to do everything we can to bring down the number of people on the transplant waiting list. Kidney failure is a battle and kidney patients need to be armed with everything they need to get off dialysis and receive a transplant. We cannot let something like high antibodies stop us from moving forward.
I, along with my fellow kidney patient warriors, call on the FDA to make further progress in supporting transplantation, beyond what they have already accomplished. The FDA must make transplants for sensitized kidney patients a higher priority, and the agency can do this by opening the door for more clinical trials, experimental transplants, and more scientific research by applying the world’s best medical expertise and technology we already have into saving these peoples’ lives. I also believe CMS must re-examine their coverage policies for life-saving experimental drugs because without greater flexibility and coverage, patients like me will remain a mere anecdote in the renewed federal commitment to kidney transplantation. I would think that our scientific medical expertise has the knowledge and ability to find ways to deal with high antibodies in kidney patients so we can get our fellow Americans off dialysis, receive a transplant, and live productive lives. What an achievement and a rare opportunity if implementing these new medical procedures could possibly impact the transplant waiting list, bringing it down by one-third!
In summary, we need development of new treatments for highly-HLA sensitized kidney patients on the transplant list. The longer they are on dialysis, the sicker they get and the more antibodies they may accumulate, making a kidney transplant nearly impossible. Sadly, these kidney patients more than likely will die if there is not a way for them to receive a transplant. This is the reason why we need the FDA to open the door and bring forth new medical procedures for these highly disadvantaged kidney patients.
The 2019 Executive Order on Advancing American Kidney Health, which established new federal transplant policy, stated, in summary, “The state of care for patients with chronic kidney disease is unacceptable; There are not enough kidneys donated to meet the current demand for transplants; increase access to kidney transplants by modernizing the organ recovery and transplant systems…; increase breakthrough technologies to provide patients suffering from kidney disease with better options for care than those currently available. Increasing more effective desensitization/suppression protocol options will meet the criteria for this mandate.”
Let us put an end to the useless suffering and premature death of so many sensitized kidney dialysis patients, get them a kidney, and into a productive life again!
Lana Schmidt, MBA, — Liberty, Illinois. Lana is a former home-hemodialysis patient and current transplant recipient. She is a member of the AAKP National Board of Directors, the AAKP Executive Committee, the AAKP Policy and Strategic Communications Committee, an AAKP National Ambassador, and a member of the National Kidney Foundation. Lana has served in many capacities throughout the kidney community over the years, including as founder of the Kidney Patients Support Group in her local area. She has raised kidney awareness from the patients’ perspective by publishing several magazine and newspaper articles; participating in TV and radio interviews; and speaking on kidney disease issues. Lana also contributed to CJASN, as a Patient Voice author, “Patients with Kidney Disease: Ready to Use Smartphones for Health Care Delivery?”.