What is A Community Based Solution to Kidney Disease?
Millions of Americans are represented through the communities in which they live, work, play and pray. Civic, fraternal, corporate, veteran, and congregational organizations can be empowered to make information available, make recommendations, and assist their members in ways that others cannot. Kidneys In Common will work closely with leaders of these communities to help identify need, identify help, and then assist in the response.
Kidneys in Common will work with individual national communities and their leadership to advance a common understanding of what is possible when Living Kidney Donationis combined with Paired Kidney Exchange. The intent is to offer an unprecedented approach to reducing, and eventually eliminating, the wait for a kidney transplant in this country: and in doing so, also reduce reliance on dialysis as the primary response to kidney disease.
For someone confronting End Stage Renal Disease (ESRD), today, it can be a challenge to find the best options available to them. Too often, the options provided also happen to be in the best interests of transplant centers, donor registries or dialysis providers. It is natural that people will look to their communities and social structures for support and help. As the Kidneys in Common network develops, we will make sure that the help and support they are looking to their communities for, is there. Transparent, unbiased information is difficult to come-by for ESRD patients. That is true for would-be kidney donors as well. Kidneys in Common intends to embrace and address this issue by becoming an independent educational resource, offering options for would-be altruistic non-directed donors. Our information will be thorough and transparent as to the benefits and risks involved in living kidney donation, and provide step-by-step considerations for their decision making process. As an organization with no direct financial ties to the transplant community Kidneys in Common will be able to monitor the transplant landscape and make sure that the interests and concerns of the donor are prioritized. Regardless of how a donor wants to be recognized, they deserve to be treated as heroes and not commodities.
In this context, “community based” means that information regarding the need for living donors will be disseminated through religious, fraternal, corporate, veteran, and other organizations. These national organizations are best suited to determine whether this information will be offered personally, such as,
“…a member of our congregation needs a kidney”
or strictly informational, such as,
1 in 3 Americans is at-risk for kidney disease. There is a critical need for living kidney donors. 5,000 American are dying annually because a suitable donor could not be identified. and an additional 250,000 Americans find themselves held hostage to a dialysis treatments with no quality of life beyond hoping and waiting.
Building a transplant program that can better serve ESRD patients — especially in underserved or minority communities — is about people first: their relationships and communities. Kidneys in Common will operate according to the idea that, ultimately, the best way to help ESRD patients is to normalize a transparent and safe path for more living kidneys to be donated. By helping to open trusted lines of communication within peoples’ own communities about the needs for a kidney and the availability of kidneys, Kidneys in Common intends to help create those paths. We will do so in ways that honor the individuals and avoid the tendency to monetize organs. Patients will benefit from an independent voice and resource, as will would-be donors.
While, in part, Kidneys in Common will be working indirectly on behalf of ESRD patients by helping to improve the processes for living kidney donors, we realize that many of the people who will contact us will be anxious and distressed. Each inquiry will receive immediate acknowledgment and a timely personal response. Whether the ESRD patients who contact Kidneys in Common have incompatible donors or no donors at all, we will provide the necessary information to help them better understand and navigate the priorities of transplant centers, registries and other programs, some of which may have competing economic interests.
Article: New York Times on American Kidney Fund, 12.25.2016, https://www.nytimes.com/2016/12/25/business/kidney-fund-seen-insisting-on-donations-contrary-to-government-deal.html
A Community Based Solution to Kidney Disease means that we empower communities of all kinds to help their own members by connecting resources to the need. Beyond that, it means that there exists an independent source of guidance and support. In addition to building lasting relationships with a long list of communities, Kidneys in Common will develop the capacity to support kidney donors through the process and provide for benefits such as lost wage reimbursement, travel, life and healthcare insurance associated with the donation, and protection from out-of-pocket medical expenses. Kidneys in Common is a new and emerging organization which has developed a manageable and efficient plan for growth. Success will be measured in simple terms: substantive engagement with civic, fraternal, corporate, veteran, and congregational organizations which results in more altruistic transplant support for ESRD patients who need it.