Chronic kidney disease is an often-overlooked public health crisis that affects an estimated 37 million Americans, 15% of the adult population, and is one of the top 10 leading causes of death. It’s most often caused by long-term diabetes and high blood pressure, but another significant cause is that of a genetic disease: Polycystic Kidney Disease (PKD), which affects an estimated 600,000 Americans — including me.
PKD came about in my family as a spontaneous mutation in my mother, who then passed it to me. This chronic disease causes the uncontrolled growth of fluid-filled cysts in the kidneys that will result in kidney failure in about half of patients by the time they are in their 50s. Currently, there are very limited treatments and no cure for PKD, meaning the only option is to turn to dialysis — an acceptable, but harsh, replacement for working kidneys — and await a kidney transplant.
There are over 100,000 candidates in need of a lifesaving organ in the United States, and over 90,000 of them need a kidney; one day I may count myself among them. Due to the short supply of deceased donor organs, the waiting period for a kidney can be upward of five years. But this timeline can be much shorter with the intervention of a living kidney donor. A kidney from a living donor offers a higher-quality, longer-lasting option that provides a better outcome for those in need.
My mother progressed to kidney failure in her late 40s and began dialysis treatment. There were no matching donors in her circle, despite a desire to help among friends and family, so she was placed on the kidney transplant list and began waiting for a match. My father was determined to make a difference and was listed for a paired exchange kidney donation, in which he would donate his kidney to someone else’s loved one, with whom he was a “match,” and the recipient’s loved one would donate a kidney to my mother, also a match.
In 2012, three years after my mother was initially listed, my father and an unnamed individual donated kidneys for the transplant of their mutual partners, a truly heroic act. After a period of recovery for both, my parents were able to resume their normal lives and have since given back to the PKD community by serving as active volunteers and mentors.
The value of a living kidney transplant cannot be overstated. Not only does that transplant prevent a person from going on dialysis or significantly shorten the wait time; it provides a longer-lasting kidney which can result in better overall health outcomes for the recipient in the long term. While donating a living kidney does present some hazards, most cases do not result in drastic changes to the donor’s health or increased risk for future kidney problems. For many people intending to donate, the roadblock to becoming a living donor is not their health, but instead the uncertainty of the cost of the procedure, a lack of proper insurance coverage and a concern that they could lose their job during the recovery period.
The Living Donor Protection Act (LDPA), introduced in Congress in March (for the fifth time), specifically targets these barriers by prohibiting discrimination in insurance practices based on someone’s status as a living organ donor. It would also federally designate recovery from organ donation surgery as a serious health condition under the Family Medical Leave Act allowing access to extended leave time without threat of consequence for a person’s employment. The LDPA also requires the Department of Health and Human Services to conduct campaigns to educate the public about living organ donation and to ensure that existing donors are aware of their rights.
Organ donation saves tens of thousands of lives each year, and it is important to continue to alleviate this unmet need. By asking your Maryland representatives in Congress to support the LDPA’s passage, you will be encouraging more living donors to come forward to give the gift of life, thus closing the gap between donors and those in need. Ultimately, the greatest way to make an impact is to register to be an organ donor online or with your local Motor Vehicle Association and then make your family aware of your designation status. And for those interested in becoming a living donor, you can contact the transplant center that a potential recipient is working with, or Donate Life America will be launching a living donor registry in 2021 for donating to the best matching individual in the country. Until then, many of us with chronic kidney disease will do our best to persist, holding out for a hero.
Greg Mainolfi (firstname.lastname@example.org) is a PKD patient, and organ and tissue transplant coordinator at the Living Legacy Foundation in Baltimore, which has been involved in multiple PKD advocacy programs and clinical trials.