The Living Donor Circle of Excellence

For this month’s AST’s president’s blog, I have asked John Gill, our President-elect, to write about the Living Donor Circle of Excellence.  The Circle of Excellence is John’s brainchild and he has been working on it for the past 2 years.  This initiative is a manifestation of John’s passion for living organ donation. He has been a thought leader in research about the risks and outcomes of living kidney donation as well as being as committed to providing access to this therapy to all of our patients.  The Circle of Excellence is a natural extension of his work and is one of the most meaningful initiatives thus far to protect living organ donors.  John believes passionately that our fiduciary role is to provide for the wellbeing of our donors and that financial neutrality is an important component of this.  The launch of the Living Donor Circle of Excellence establishes the AST at the vanguard of living donor advocacy.  John has forged a partnership with the Canadian Society of Transplantation and the ultimate goal is to have global impact on the care and protection of all living organ donors.  Please join me and thanking John for his work and vision and let us all work towards the success of this program.

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I just returned from a vacation that was long enough to forget a few of my password logins.  Most of us cherish the opportunity to unplug, recharge and reconnect with whatever or whoever is really important to us, and there are few things we would pass up vacation for. Yet for living kidney and liver donors, using vacation time to recuperate after donor surgery is often the only option to avoid loss of income or job security.  

While the medical costs of the living donor evaluation and donor surgery are covered by the recipient’s insurance, donors pay out of pocket for costs related to donation including travel, meals, lodging, parking, child, elder and pet care which can range between $100 and $10,000 dollars. These direct costs are compounded by the indirect costs of lost wages which are typically between $1000 and $20,000. Reflect on this for a moment; persons who are willing to literally give a part of themselves to enable a life-saving transplant typically must also pay thousands of dollars to donate.     

Notwithstanding the immense societal benefits of living donor transplantation and an abundance of evidence that financial considerations limit donation, there is near uniform support in the transplant community for eliminating the financial cost of donation simply because it is the right thing to do.  The Presidential executive order to allow reimbursement of  lost wages under the NLDAC  program is a welcome step towards this goal, but it is likely that donor eligibility and reimbursement amounts will be limited. The AST’s living donor tool kit helps potential donors estimate their costs and includes links to available sources of financial assistance in addition to NLDAC. 

The AST has a history of advocacy for living donors: We worked closely with the Clinton Administration and former Congressman Elijah Cummings (D-MD) among other House and Senate leaders to enact legislation to provide employees of the federal government 30 days paid leave for organ donation (5 U.S.C. 6327). Thereafter, a number of states began offering state employees up to 30 days leave (paid or unpaid) for serving as a living organ donor. The Living Donor Protection Act to prohibit discrimination of living donors in obtaining life, disability or long term care insurance is a major focus of the AST’s current advocacy efforts in the federal legislature along with ongoing efforts to enact the Immuno-bill. (Is there a better way to respect living donors than to ensure access to lifesaving medications required to maintain the function of the organs they donated?). (Insert link to immuno-grass roots effort)

This month we are excited to  launch a new initiative to help eliminate the costs of living donation for all donors. The Living Donor Circle of Excellence (aka The Circle) is a corporate recognition program that will celebrate and promote companies that implement an internal policy to support the wages of a living donor employee or the donor of an employee. There are approximately 3.5 living donors per 100,000 employed persons, so for most companies supporting a donor will be an infrequent event. However, by implementing policy to support donors, companies will demonstrate their recognition and support of the unique importance of living organ donation in society.  By including living donation as a health event covered under their company’s health benefits program, employers signal their role in optimally supporting individuals who are directly contributing to a societal good. In addition to recognition by the AST, membership in The Circle may help companies attract and retain employees. Finally, by supporting the donors of employees in need of transplant, employers may indirectly benefit by helping their employee return to health and resume work as quickly as possible while reducing healthcare expenditures. The AST is pleased to acknowledge United Health Group (UHG) as a founding partner of The Circle. UHG will include all 300,000 of their employees in their internally branded HERO program.  In addition, that AST has formally partnered with the Canadian Society of Transplantation to enable Canadian donors to be supported through their employers. 

By normalizing living donation as a routinely covered health encounter, the Circle aims to enable more persons to consider donating. The intent is that membership in The Circle grows exponentially – with member companies encouraging other companies to join. But we need your help to get the word out. As an AST member you can help ensure the success of the Circle by:

  • Asking your institution to join The Circle.
  • Spreading information about the Circle to businesses with whom you have an established relationship.  
  • Making living donors and patients aware of “The Circle” so that their employers might support them and become Circle members.
  • Contacting companies who have already supported donors in the past to join retroactively. 

To obtain information about The Circle that you can use to “spread the word” or to refer companies, donors or patients please contact Darlene Blevins at AST.

 

Comments

As a living donor and transplant professional, I appreciate your new initiative. I donated at an out of state transplant center due to research restrictions. My workplace, Sentara Healthcare and their transplant center at Sentara Norfolk General Hospital, have non PAL, non sick pay paid leave of 4 weeks for living donation. Although I had sick time to use, it was a great benefit. The unfortunate part is my out of town donation cost me about $3,500 in out of pocket expenses for travel, lodging, pet boarding and meals. This does not include the using all of my husband’s vacation pay as my caregiver.

I was well aware of the personal expense and wouldn’t have changed my mind about donation. If you need any help with your initiative, fell free to contact me.

Karl Neumann
Keneuman@sentara.com

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