NKF program aims to help patients find living kidney donors

At the White House Organ Summit on June 13, the National Kidney Foundation announced a new collaboration with Johns Hopkins University and Novartis to nationally launch the Live Donor Champion Program. Developed by transplant surgeon Dr. Dorry Segev at Johns Hopkins University, the Live Donor Champion Program aims to overcome common barriers to finding a living kidney donor—a need for more education about living donation; and a reluctance to start a conversation about donation among transplant candidates. Working with Johns Hopkins University and Novartis, National Kidney Foundation will use its networks to disseminate a set of educational resources to transplant centers nationwide. The Champions program will teach people how to use their own personal connections and social networks to raise awareness about the need for kidney donors; and help to identify potential live donor candidates for a family member, friend or themselves.

I asked the National Kidney Foundation CEO Kevin Longino to explain some aspects of the program. -by Rebecca Zumoff

NN&I: What sort of educational resources will the NKF be disseminating? Will they be training transplant center staff, providing pamphlets, etc.?

Kevin Longino: We will be working very closely with John’s Hopkins to train, engage, and assist the Transplant Centers in implementing this program. In addition to training, Johns Hopkins and NKF will provide both print materials and web-based materials available to aid in replicating the very successful program from John Hopkins.

NN&I: The Live Donor Champion Program “aims to overcome a reluctance to start a conversation about donation among transplant candidates.” Can you explain this reluctance a little bit? What causes the reluctance and what can be done to minimize it? What will the NKF do to overcome this reluctance?

Longino: The results of our research with patient groups indicated there are many psycho-social barriers to a patient "asking" their networks for a kidney. This may include the stress of being sick, a lack of understanding the implications of living donation, or a feeling of guilt from asking for that kind of commitment from someone. To help our patients overcome these issues, we are partnering with Johns Hopkins and Novartis to roll out the Live Donor Champion Program nationwide. By identifying a champion in their life, and training them with the proper knowledge and tools, the pressure on patients can be removed.

In addition, NKF offers The Big Ask, The Big Give campaign, which complements the Live Donor Champion training program. This educational program provides factual, unbiased information addressing common concerns and offers support for both patients and donors in making a decision about living kidney donation.

NKF also offers the NKF Peers program, which connects those affected by kidney disease with an informed and supportive mentor who has already been through the experience. This program is an anonymous way to consider living donation; it allows potential donors the opportunity to work through the emotional and practical questions they may have, before making the commitment to donation.

Through all of our programs touched on here, NKF provides a comprehensive approach to creating awareness, educating, and lending support for the whole living donation journey.

NN&I: Is there a sense that there are potential donors out there that just haven’t been reached?

Longino: Yes, many people aren't aware that living donation is an option, so we are working to educate patients and families about the possibility of donation. That way, people can learn more about it and make a thoughtful decision based on all of the facts.

NN&I: What methods will the NKF use to teach people how to use their own personal connections and social networks to raise awareness? Can you provide some background information on using social networks to raise awareness?

Longino: We are offering a varied and evolving set of tools that allow the Champion or patient the ability to effectively reach their social network.

NN&I: What are the specific goals of the program?

Longino: Johns Hopkins University has been working on this program for a couple of years now and the improvements are dramatic. In pilot studies from Johns Hopkins, the results show the Champions program increased living donation rates by approximately 50%. This is a very high success rate and we believe this program will greatly help those patients looking for a living donor; and increase living organ donation overall.

NN&I: When will this program be implemented? What are the first steps in implementing it?

Longino: The program has only been conducted at Johns Hopkins so far. Now, NKF is working with a select group of transplant centers over the next few months to understand how to adapt and scale the program to all transplant centers that wish to participate.