Have you ever had times when another patient helped you and you thought, “I want to be like that and help other patients have a better quality of life”? There is something about being a kidney patient that often causes us to see other patients as family and want to help them live healthier, happier, and longer lives. A great way to do just that is by becoming involved in your local ESRD Network.
What are the ESRD networks?
Not many kidney patients know that back in the 1970’s when Medicare first began paying for dialysis treatment for Medicare beneficiaries that Medicare also set up oversight groups the ESRD (end-stage renal disease) networks, to make sure that dialysis treatments were of good quality.
ESRD networks were also responsible to see that patient opinions and insights are taken into account in network decisions and activities and also in efforts to constantly improve the quality of dialysis care. The Networks were also responsible to help resolve patient complaints.
Currently, there are 18 regions across the United States served by ESRD networks. The chart below shows how the country is divided into the specific networks.
Where do I fit in?
Each Network is required by the Centers for Medicare Services (CMS) to have a Patient Advisory committee, which means you can serve as a patient advocate on the committee. Committee members are volunteers. They are not paid wages; however, all of their expenses are paid so that cost is not a barrier to being actively involved. First, you must apply for the position. If you are accepted to a Patient Advisory committee, you may find yourself being trained to help other patients take better care of themselves.
You might be asked to work with groups of medical professionals to plan better ways to educate patients. Experienced committee members are often asked to serve on the Network Board of Directors or on the Medical Review Board which is the medical policy making arm of the network.
Most network committees have patient volunteers doing great things such as serving as network representatives in local dialysis facilities, helping organize statewide patient meetings, and being active in engaging patients in their own care.
In several of the networks, Patient Advisory committee members also serve on Grievance committees. These committees consider and rule on remedies when a patient or family member and a dialysis facility are unable to resolve a patient concern without receiving assistance from a neutral third party.
Patients who volunteer their time and energy to serve as patient advocates on the Patient Advisory committees of the networks are the voices from the renal community that make life better for all the rest of the dialysis patients.
If you are interested in getting involved, you need to contact your own ESRD network. Under new rules issued by CMS, each dialysis facility in the country is mandated to have a poster in a conspicuous place by October 15 2008 giving network contact information. Call the toll free number you find there and ask to join the Patient Advisory committee.
If you are unable to locate a network poster in your dialysis facility, ask your social worker for the network’s toll free number.
Getting involved and offering first-hand experience on the patient’s perspective is invaluable to you and your fellow patients in living healthier lives.
For more information, or to find out which network you belong to, please visit www.esrdnetworks.org.
About the Author
William Dant dialyzed from 1977 through 1994, when he received a deceased donor kidney. His fistula lasted all of his time on dialysis, during which time he had no access infections and no overnight hospital stays. Bill is a weKAN patient activist, an active member in his regional ESRD Network, and a member of the American Association of Kidney Patients.
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