By Cynthia Puryear
I will never forget the day or my exact location when I received the call from my sister in Arkansas telling me she had taken our mom to the doctor, and it wasn’t good news. It was my shocking introduction to chronic kidney failure, and my mom was slowly progressing to End-stage Renal Disease (ESRD). It was a blessing that our mom had no other ailments or serious medical conditions, so we were able to move forward with the transplantation discussions. She also had 10 children willing to donate a kidney. Out of 10 children, I was going to defer to my siblings to donate since I had a toddler. Fast forward, many of siblings did not get beyond the pre-screen for various reasons. Ultimately, there were only two matches, and one healthy enough to donate – me! My Christmas gift to my mother was a new kidney.
Why Living Donation Matters!
My mother was fortunate enough to receive a transplant from a family member, and never had to be on an organ waiting list. Sadly, many others are not as lucky. In hindsight, did I think about what that would mean for me in the future? Never. Would I do it all over again? Absolutely yes, and without hesitation! Did I ever think that if I needed insurance in the future, I would be discriminated against as an organ donor? Absolutely not! But sadly, discrimination against organ donors is very real with higher premiums or even denial of insurance based solely on their donor status.
Contact Your Congressman to Support the Living Donor Protection Act (H.R. 4616/S. 2584)!
Help us today by contacting your congressman! During February, the Living Donor Protection Act was introduced in Congress to protect living organ donors by prohibiting insurance companies from charging higher premiums, and from denying or limiting life, disability and long-term care insurance to living donors (the Affordable Care Act prohibits discrimination in the availability or pricing of health insurance), and also provides Family and Medical Leave Act protection. I’ve heard some of the discrimination stories – insurance challenges, not enough leave time, and more. With over 100,000 people waiting to receive a kidney transplant, we cannot risk losing potential donors. There is a great need for living donors, and we must help protect potential donors and make this process simple by assisting them in their efforts to save another’s life. We’re talking about the gift of life to another individual!
As a living donor, this is very personal because potential donors may not know the cost repercussions and discrimination they may incur post donation. Now is the time to move the Living Donor Protection Act forward in Congress. Take a look at the U.S House of Representatives sponsors, and U.S. Senate sponsors. If your congressman is a sponsor, send them a thank-you note. If they are not a sponsor, visit our Advocacy Action Center and ask them to support this important legislation.
Get Active on Social Media!
One of the most powerful ways to educate elected officials and raise public awareness about the Living Donor Protection Act is to share our story through social media. The power of social media gives us “real time” and “instant” opportunities to help amplify this great life-saving message by articulating the need to affect public policy and get our elected officials involved. So, send a tweet, or post a Facebook message to educate your elected officials on the Living Donor Protection Act, kidney disease, and invite them to a local NKF event.
Cynthia Puryear is a living donor and is an Executive Committee member of the NKF Living Donor Council, and holds an appointment on the Advisory Council on Organ Transplantation (ACOT).