The give and take of organ donation

Several years ago, I covered the National Kidney Foundation’s U.S. Transplant Games for the first time. Held in Orlando at the ABC-TV Sports Stadium there, the Olympic-style event brought together transplant recipients from around the country to compete in sports like tennis, bicycling, softball, golf, table tennis, etc.

The most striking experience for me at the Games –– one I have never forgotten––was the opening ceremonies. Into the stadium poured the transplant athletes, representing teams from various states and sponsored by their local organ donor organizations. Families members joined them, too, as they marched around the stadium.

But watching living donors and families of deceased donors mingle in with the athletes brought the purpose of the Games full-circle. It was a celebration of life––and of lives that helped others to live. Some recipients were meeting donors and deceased donor families for the first time.

In that stadium, the success of organ transplant was evident. A surgical procedure that, combined with development of an effective drug therapy, had allowed individuals to live with organs from another human being. But without those donors present that evening, without that evidence of what happens when humans sacrifice for others, that stadium would have been empty.

Unsung heroes

The Transplant Games––the next edition will be in Salt Lake City in August 2018––celebrated the best in humankind. But donation is a practice that takes place every day. Last year, over 33,000 transplants were performed––a 20% increase over the last five years. That was achievable by individuals and families who said “yes” to a living or deceased donation.

That’s encouraging for people like Risa Simon, who runs the nonprofit organization TransplantFirst Academy. Her Phoenix-based organization recently persuaded state legislators to recognize March 20 as Living Kidney Donors Day.

Simon, a living kidney donor recipient, said at the ceremony: “Since living kidney donors don’t wear a Medal of Honor or a superhero’s cape, it’s often hard to recognize them. They deserve a lifetime achievement award for the role they play in saving lives and inspiring community citizens to give back in bigger and bolder ways.”

Arizona has over 2,000 people in need of a kidney transplant, with a wait list stretching between 3 to 5 years. The paradox is that while 500 patients may get a donated kidney this year, another 800 new patient names will be added to the list.

What does it take to donate?

Such statistics exist all around the country––too much demand, too little supply.

But there are many people who have made a difference. Simon’s living donor, Melissa Bein, was a transplant center administrator who worked at the Mayo Clinic in Phoenix and is now with UC Davis as an Executive Director. Kati Walker, who donated one of her kidneys to her children’s elementary school principal in Cave Creek, Ariz., says, “Personally, I had never thought about organ donation other than checking that box on my driver’s license.

“However, one day in January 2013, an email came out from the Cave Creek Unified School District, where we live and where our two children attend school. Our elementary-school principal, Nancy Shaver, had polycystic kidney disease and needed a kidney.”

Kati agreed to donate, and she and Nancy just celebrated another Kidneyversary in January. “Three years’ post-transplant, Nancy’s new kidney is doing great,” Kati told NN&I. “She is back at work, doing all things principal and loving every second. We have formed a crazy bond, which is hard to put into words. We were acquaintances at one time. Now, she is my family.

“The decision I made was a no-brainer; there was a need that I knew I could meet,” noted Walker. “I had the faith to know all would go well, the health to recover quickly and the hope that my recipient would be just fine. It made me realize just how important it is to give to others in this life. Life is a journey, and we are called to be our best selves and love our neighbors.”

What else do we need to do?

April is National Donor Life Month, and U.S. legislators used the opportunity to introduce the Living Donor Protection Act. H.R. 5263 was introduced by Representative Jerrold Nadler (D-NY), and Representative Michael Burgess, MD (R-TX) to promote organ donation and protect the rights of living donors. This bill prohibits insurance companies from denying or limiting life, disability and long term care insurance and from charging higher premiums to living organ donors. The bill also clarifies that living organ donors may use time granted through the Family and Medical Leave Act (FMLA) to recover from transplant surgery and finally, the bill directs the department of Health and Human Services to add information on these new protections to its materials to encourage more Americans to consider living donation.

Employees of the federal government now receive 30 days paid leave for organ donation and seven days for bone marrow donation. Several states have already passed living donor legislation; California passed a law in 2010 that requires employers of any business that employs 15 or more to provide up to 30 days of paid leave for organ donation and permit employees to return to the same position or an equivalent position. Some states give employees up to 30 days leave (paid or unpaid) for serving as a living organ donor. Twelve states—Arkansas, California, Connecticut, Hawaii, Louisiana, Maine, Minnesota, Nebraska, New York, Oregon, South Carolina, West Virginia—and the District of Columbia have organ or bone marrow donor leave policies impacting private sector employees.

Likewise, the National Living Donor Assistance Center, managed by the American Society of Transplant Surgeons and funded by a grant from the federal Health Resources Services Administration, provides funding for donors who meet certain economic requirements. Checks are written to help cover hotel bills and travel expenses. Encouraging people to make the sacrifice of organ donation shouldn’t be hampered by whether it is affordable. Such individuals should not lose wages or pay expenses to help another.

To date, more than 139,000 living kidney donors have made lives better for thousands of people with kidney disease. But there is always the opportunity to do more. Let’s keep that Olympic stadium filled with more success stories. -by Mark Neumann