Clovis man backs law to protect organ donors from job losses, higher insurance rates

Every time I renew my driver’s license, I’m asked to decide if I’d like to continue displaying that little pink dot on my license: “DONOR.” I agree to this every time, but have never really paused to think through the implications.

Currently, around 90,000 Americans are on the waiting list for a kidney transplant, with 24,000 receiving one kidney in 2021. On average, patients wait an average of three to five years for a deceased donor kidney transplant.

The other option for someone on the waiting list is to find a living donor, someone who would be willing to undergo major surgery to altruistically donate one of their kidneys.

Understandably, the number of those willing to become living donors pales in comparison to those who opt-in as organ donors through the DMV. In 2020, only 22% of kidney transplants came from living donors.

Becoming a living donor is brave, but can be a logistical nightmare. I’ve heard countless stories from people who are considering becoming a donor but can’t afford to take time off of work to recover, have concerns about paying higher insurance premiums or being dropped altogether, or may not be guaranteed a job upon their return — all for literally giving someone a kidney.

My knowledge of this grew rapidly seven years ago when my father needed a kidney transplant. We’ve both been diagnosed with Autosomal Dominant Polycystic Kidney Disease (ADPKD), a genetic condition that causes fluid-filled cysts to grow on your kidneys until they eventually stop working. Most people have two kidneys and can live perfectly fine without one, but not both. When the kidneys fail, the only options are dialysis, which carries a 35% five-year survival rate, according to the University of California, San Francisco or a transplant, which carries an 80% five-year survival rate.

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In 2015, my dad was officially placed on the transplant waiting list, a registry of people who need an organ or tissue donation from someone with the little pink dot on their license who’s since passed away. The average wait time for someone in my dad’s position at that time was five to seven years, which he didn’t have. The need for organs to transplant significantly outpaces the supply. In 2020, nearly 6,000 Americans died while on the waiting list — meaning that they died from organ failure before a donor organ became available.

As a family, we held onto every ounce of hope we had as we searched for someone who would be willing to donate a kidney to my father, and after several emotional months of discussions and outreach, we learned that my mother was a perfect match for my father in more ways than we knew.

I can only imagine how many families are holding onto the same hope that ours did just a few years ago. With months of planning, years of saving, and the benefits of good health insurance and a flexible work schedule, my parents were lucky. Others run into obstacles when they consider becoming a living donor.

Thankfully, some legislators on Capitol Hill are working on a solution to these barriers to donation: The Living Donor Protection Act (H.R. 1255/S. 377). It has earned significant bipartisan support in both chambers of Congress. Its purpose is simple: protecting living donors. Individuals who have so bravely and altruistically donated an organ should not have to risk losing their jobs or their insurance coverage just because they made this selfless decision. With these protections in place, more people will be free to choose to become living donors, and fewer people will die waiting for a transplant.

I was so pleased to learn recently that Rep. Jim Costa, D-Fresno, has chosen to co-sponsor this bill along with over 130 other representatives from both sides of the aisle. As the 117th Congress comes to a close later this year, I hope that Republican Reps. Kevin McCarthy, Tom McClintock, David Valadao, and recently elected congresswoman Connie Conway will join congressman Costa in support of the Living Donor Protection Act. Cosponsoring this lifesaving legislation is as easy as getting that little pink “DONOR” dot on your California license - and telling your elected officials to support the LDPA is even easier! Just go to https://www.congress.gov/members/find-your-member to find your elected officials, and give them a call or write them an email.

Lainie Esquivel (lainieesquivel@gmail.com) is a PKD patient and advocate based in Clovis. Lainie advocates for PKD and kidney disease patients, families, and researchers through the PKD Foundation’s Advocacy Champions Network and the National Kidney Foundation.