Defending Living Organ Donors In Kansas

By Sue Hendon, Board Member of the NKF of Kansas

Since the 1960s, when I heard President Kennedy say, “Ask not what your country can do for you, ask what you can do for your country,” I have been driven to help others.  I joined Volunteers in Service to America (VISTA), the Peace Corps, and later became a hospice nurse.


Sue Hendon testifying before the Kansas House Financial Institutions and Insurance Committee

Several years ago, I was shopping in Costco when I ran into my friend, Mary Long, and asked how she and her husband were doing. Mary shared that her husband, Dr. Edwin T. Long who suffered from CKD, needed to start dialysis, despite having managed his kidney disease for years through strict adherence to his kidney diet. I volunteered on the spot to be tested to see if I was a match, and I was!  Later that year, I donated my kidney to Ed, saving his life.

During mid-January, I was contacted by a staff member of National Kidney Foundation o see if I would like to testify before the Kansas House Financial Institutions and Insurance Committee to ask them to pass the Living Donor Protection Act (HB 2041).  According to a Johns Hopkins University Study, one-fourth of surveyed living donors who tried to obtain or change their life insurance experienced problems because of their decision to donate.  I leapt at the chance to once again do something to help keep my fellow living organ donors from discrimination with life insurance.

Testifying at the newly renovated Topeka Statehouse was an exciting and humbling experience. We arrived early which afforded me the opportunity to observe the Senate in progress and we settled into Committee Room 212-North.  I was able to speak with several representatives on the House Insurance Committee. One legislator told me he was newly appointed as a representative of a small Kansas town and he was excited to be part of creating positive changes in the state, like I was.  Joined by fellow advocates, I testified before the committee about the necessity of protecting living organ donors and removing barriers to donation.

I also had an opportunity to respond to questions from lawmakers, many of whom had no experience or knowledge of kidney disease.  This experience illustrates how much still needs to be done to educate our policymakers about the challenges and barriers we face as kidney patients and living organ donors.  I hope that you will join me in educating them, by talking to your legislators when you see them about your story and your challenges, and please don’t forget to write your legislators in support of Kansas’ Living Donor Protection Act.

Thank you to the House Insurance Committee, Ron and Julie Hein, John Monroe and the National Kidney Foundation for helping to move this legislation forward.  I was happy to see that the House Insurance Committee voted unanimously to approve the bill on February 6th, and I look forward to testifying before the Kansas Senate as well!


Left to Right: Mitch DePriest, Julie Hein, Ron Hein, and John Monroe

About nkf _advocacy

The National Kidney Foundation's advocacy movement is for all people affected by CKD, transplant candidates and recipients, living and potential donors, donor families and caregivers. We empower, educate and encourage you to get involved on issues relating to CKD, donation and transplantation.
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1 Response to Defending Living Organ Donors In Kansas

  1. Keith E. Caro says:

    I am a Kidney transplant patient. I received my kidney on June 30, 2012. One of my greatest concerns has been legistration for kidney donors and reciepents being proposed by uneducated policy makers. I truly believe in educating policy makers prior to it being presented to a State or Federal Congress for approval. I am educated and available to help with this process.

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