It’s been four years since I donated my kidney in a so-called “paired exchange,” allowing my friend Tinh to receive the kidney she needed.
I met Tinh during nursing school in September of 2012. We quickly became friends, spending grueling hours in our university’s library, preparing ourselves for our future nursing careers.
Her kidney disease developed from a strep throat infection she caught in 2006. Post-streptococcal glomerulonephritis is a rare condition that affects the kidneys because of the body’s immune response against the strep infection.
I made my decision to donate my kidney to her shortly after the birth of my daughter in September of 2013. Tinh had received a kidney from her mother 2010, but the transplant failed, leading her to restart dialysis.
I imagined the pain her mother and loved ones must have felt to watch her go through such an ordeal. I would want someone to step up for my daughter if I could not give her what she needed to survive. Once I made my decision, however, and passed all the medical, social and psychological screening at Northwestern Memorial Hospital, we got the news that I wasn’t an exact match.
So the transplant center gave me the option to do a paired exchange, meaning that Tinh would receive a kidney from someone else, and my kidney would go to another person who was a match for me.
For the laparoscopic transplant surgery in January 2015, I stayed in the hospital overnight and went home the next day. I was back at work three weeks after my kidney was removed. My health is the same as it was before, and my life continues on as normal. That’s how it can be for anyone on the transplant list, but that isn’t always the case.
Current numbers show there are 113,000 men, women and children on the national transplant waiting list. In 2018, only 36,528 transplants were performed. These statistics make it clear thousands of people who will never receive the organ they desperately need. Twenty people die each day waiting for a transplant. Many wait knowing that death is a possible outcome.
Luckily, Tinh received her kidney and she is flourishing: she went back to school, she travels and she has a successful career. But surgery is not the end of treatment for her or for any organ recipients. She needs lifelong follow-up and medication to survive. The medication is expensive and many cannot or do not know how to pay for the medications.
Some insurers do not coverage for the anti-rejection medications essential to an organ recipient’s survival. If a patient does not take these medications as prescribed, the body’s immune system will destroy the new organ.
Chronic rejection is the leading cause of transplant failure. If a transplanted kidney fails, a patient has the option to go back on dialysis. If a heart, lung, or liver transplant fails, the patient will be put back on a waiting list for another transplant. Many will die before getting one.
Medicare offers kidney recipients some respite, as anyone under the age of 65, with end-stage renal disease will receive coverage for dialysis and kidney transplantation. Depending on what part of Medicare they had while receiving a kidney transplant, some recipients will receive coverage for anti-rejection meds for the rest of their lives.
Other recipients will receive coverage for 36 months after a successful transplantation. For those who don’t receive life-long coverage, anti-rejection medications can cost $10,000 to $14,000 per year.
Other organ recipients such as liver, lung and heart transplant recipients do not receive the same financial offset as kidney recipients, because failure of these organs are not covered the same way under Medicare.
Some individuals waiting for life-saving transplants are turned away due to inability to pay for anti-rejection medications post-transplant, and turn to crowdfunding sources such as GoFundMe.
For instance, social media recently joined in the cause for patient Hedda Elizabeth Martin, who was reportedly not considered a candidate for a heart transplant, because of concerns on how she would pay for anti-rejection medication.
Last year, there was much press surrounding 11-year-old Sofia Sanchez, who had two wishes granted: dancing with the musical artist Drake, and receiving a heart transplant at Lurie Children’s Hospital. A happy ending to a transplant story is what everyone wants to hear. That is not always the case.
As a registered nurse, I can possibly understand why an organ would not be allocated to an individual who cannot afford anti-rejection medication; it would be perhaps seen as not the best use of a viable organ. Perhaps the rationale is that organs are scarce and they need to go to patients who have the best chance of survival. However, a patient’s chance of survival based on their economic ability to afford the medication is unconscionable. It is not only the wealthy who deserve organ transplants.
No legal protections for organ recipients exist in the form of federal regulations that mandate insurers to provide lifelong coverage for anti-rejection medications.
Some organizations have joined a coalition named Honor the Gift, which seeks to extend Medicare coverage of anti-rejection medication beyond 36 months for kidney transplant recipients, but this does not include recipients of other organ transplants.
Last April, during Donate Life Month, I celebrated as part of the largest gathering of living donors in Chicago, breaking a Guinness World Record with 410 kidney and liver donors coming together to raise awareness.
Awareness of organ donation is more important than ever: the United Network for Organ Sharing has decided to broaden the geographic regions where livers are shared to decrease wait times for livers nationally.
But this new system will increase organ transplant disparity, because patients in wealthier areas, who are more likely to receive an organ because they can afford the care associated with it, will have access to the organs that were previously being transplanted in poorer areas. The best way to combat the scarcity of organs and ensure everyone has a fair chance of receiving one is by increasing organ donation, live and deceased.
I count myself lucky to have been able to help my friend with an organ donation she needed. She is fortunate to have excellent insurance and so is able to afford her anti-rejection medications.
Every person in need of an organ donation in this country deserves the right to a healthy future, regardless of economic circumstances. This month and all year, it is essential that healthcare advocates, insurers and healthcare providers all do the right thing for every patient.