Do you know someone with kidney disease? The probability is that you do. An estimated 35.5 million adults in this country — that’s 1 in 7 — have chronic kidney disease, although most do not know it because it is a “silent” disease with few symptoms until its late stages.
I am one of those 35.5 million. My genetic kidney disease progressed to the point where I would require either dialysis or a transplant to stay alive. I very much wanted a transplant, but I was distraught to learn that the wait time for me to receive a kidney from a deceased donor would be seven to 10 years as there are over 91,000 people on the national waitlist for a kidney, including over 18,000 people waiting in California.
Moreover, almost all kidney patients require dialysis while they wait, and dialysis itself is very debilitating with a high mortality rate. Last year ,3,707 people died while on the waitlist and another 4,852 were removed from the waitlist because they became too ill to transplant.
These numbers are not abstractions to me; my own mother died on dialysis while waiting for a kidney. Each of these people underwent a rigorous evaluation process to be placed on the waitlist. They were healthy enough at that time for transplant — but our system failed them due to the shortage of kidneys.
I am one of the extremely fortunate ones. I received a transplant from a living donor — a comionate and generous friend donated one of her kidneys to me. To honor this gift of life, I have worked to measures that increase the number of living donor transplants.
The number of deceased transplants has been slowly increasing, and I encourage everyone to be a deceased donor. But only about 1% of those who sign up to be a deceased donor will die in a manner that will allow them to donate. We need far more living kidney donors to address the national kidney shortage crisis.
Well-intentioned attempts to increase the number of living donors have not yielded significant results, but here is hope. In Congress there is currently bipartisan legislation, the End Kidney Deaths Act, H.R. 2687, which is a 10-year pilot program to incentivize living donation by providing a $10,000 refundable tax credit for five years to those who donate one of their kidneys to patients on top of the waitlist, those who have been waiting longest for a kidney.
These funds would eliminate the cost of donation that many living donors incur for time off from work, travel, paying for child care, etc., and would save tax dollars as the cost of transplant is much lower than the ongoing cost of dialysis. But far more importantly, it would save lives.
This approach is not without controversy as there are concerns that vulnerable populations would be more likely to participate to receive these funds, and those are legitimate concerns. But given that all potential living donors would still need to be approved through the same rigorous evaluation, owing to well-known health disparities such vulnerable populations are not likely to be approved.
And none of this process occurs quickly: The evaluation itself can take months and, if accepted, the transplant then needs to be scheduled, and the donor would not be able to apply the first tax credit until the following year and then for the next four years — so this is hardly a get-rich-quick scheme. Moreover, this legislation would have the advantage of undercutting the illicit kidney trade as well as the inequity in the current system, in which people receiving living donations are overwhelmingly White with excellent health insurance.
Our nation’s inability to provide a transplant to those with kidney disease is a national tragedy. We need a bold, new approach as the number of Americans with kidney disease is only predicted to increase.
I have asked my representative, Sara Jacobs, D-San Diego, to co-sponsor H.R. 2687. I am grateful that California Reps. Josh Harder, Nancy Pelosi, Kevin Mullin and Sam Liccardo have already co-sponsored H.R. 2687 and I urge other congressional representatives who care about their constituents with kidney disease to likewise.
Let’s be certain to take this opportunity to do something meaningful and measurable now to reduce human suffering and protect the future health of our loved ones and our neighbors suffering from kidney disease.
Marlin is a retired professor and lives in Del Cerro.
