People Like Us
“People Like Us” is a growing movement to empower, educate and enable people with chronic kidney disease (CKD), transplant recipients, donors and family members to become effective advocates on issues related to their health. 
About
People Like Us includes the diverse perspectives and wealth of expertise provided by members of the NKF’s three long established constituent councils:
The Patient and Family Council works to ensure that people with kidney disease receive the best care possible and promotes patient and family involvement in life enhancing programs.
The National Donor Family Council serves donor families and works to increase the sensitivity and effectiveness of the organ recovery process.
The transAction Council promotes a better quality of life for transplant recipients by providing support, information and programs on education, fitness and research.
“People Like Us” In Action
People Like Us is the largest, most influential group of patient advocates representing people affected by chronic kidney disease (CKD), as well as individuals belonging to the organ donation and transplantation communities. Through People Like Us, concerned individuals are provided with the knowledge, skills and support needed to become agents of change kidney disease, donation and transplantation-related issues.
As People Like Us continues to grow in strength and numbers, we will continue to advocate for the health and well being of people with kidney disease, organ donors and donor families, and those who have received or are awaiting a transplant. To join in the efforts of this strong and effective patient advocacy organization join online or print out a form and either e-mail it to us at peoplelikeus@kidney.org or mail it back to us (30 East 33rd Street New York, New York 10016). Also, feel free to call us at (800) 622-9010. Access the Take Action Network.
People Like Us Gets Results
"People Like Us" has been hard at work over the past few months contacting key Members of the U.S. Congress on legislative proposals affecting the kidney disease community. The People Like Us Take Action Network has been extremely active writing letters to key elected officials on various public policy issues.
To learn more about our public policy initiatives, and to sign up for the "People Like Us" take action network, please go to www.kidney.org/takeaction.
Patient Advocate “Fly-In” held on May 21-22
NKF and DPC Work Together for Change on Capital Hill!
The National Kidney Foundation (NKF) and Dialysis Patient Citizens (DPC) teamed up on May 22 to urge lawmakers to pass a bill that would provide adequate treatment information for patients prior to their start on dialysis.
On May 21 forty patient advocates flew into Washington D.C. to participate in a People Like Us (PLU) advocacy training hosted by NKF and DPC. This training included skill-building and role-playing exercises as well as worked to teach communication techniques when talking about the public policy process. The goal of any PLU training is to help patient advocates become strong and effective advocates for both themselves and others affected by chronic kidney disease, organ donation and transplantation.
On May 22 patient advocates from key Congressional Districts met with their Members of Congress to discuss the addition of the Kidney Care Quality and Education Act into the Medicare bill presently being considered in the Senate.
While in meetings on Capital Hill, patient advocates personally asked for the development of a Medicare pre-dialysis education benefit. This pre-dialysis education benefit would include a maximum of six classes to be reimbursed by Medicare. Class topics would be: a summary of the kidney function, difficulties associated with diminishing kidney function, a comprehensive review of treatment options, including discussion of vascular access alternatives for dialysis, the transplant waiting list and the process of identifying living kidney donors.
During the PLU “fly-in” with DPC:
- NKF Advocates met with 38 offices on Capital Hill
- NKF Advocates and DPC Ambassadors met with a total of 83 offices on Capital Hill
- NKF advocates came from MD, ME, NY, KY, MA, KSSD, ND, OH, SC
- In addition, DCP Ambassadors came from CA, GA, IA, WI, ID, OR, KS, MN, NC, SC, OH, VA, AZ, TX, FL, MI
To read about NKF Patient Advocate and PLU member, Amy Nash’s experience while in Washington D.C. on May 21-22 click here
DPC is dedicated to improving dialysis patients' quality of life by developing awareness of dialysis issues, advocating for dialysis patients, improving the partnerships between patients and caregivers and promoting favorable public policy. For more information, contact (866) 877-4242 or www.dialysispatients.org.
PLU “fly-in’s” are held through out the year. To find out how you can become a PLU member, please visit the People Like Us Website or call us at (800) 622-9010.
World Kidney Day 2008
NKF Hosts 3rd Annual “People Like Us” Patient Advocate “Fly-In”!
PLU advocates visit with lawmakers to discuss The Kidney Care Quality And Education Act of 2007.
The National Kidney Foundation marked the 3rd annual “World Kidney Day” on March 13th with a Capitol Hill “fly-in” of NKF People Like Us (PLU) advocates. The fly-in was part of a nationwide World Kidney Day outreach effort led by NKF with the help of Affiliates and Divisions to raise awareness about the importance of kidneys and to support education and understanding that kidney disease is common, harmful and treatable.
World Kidney Day activities began on March 12 with an all day training for 25 PLU patient advocates at the Washington Plaza Hotel. This training worked to help PLU members become strong and effective advocates for both themselves and others affected by chronic kidney disease, organ donation and transplantation.
Later that night NKF and ASN hosted a Congressional reception at The Rayburn House Office Building on Capital Hill with special guest Randy Thomas of the Washington Redskins. Mr. Thomas spoke about how his grandmother battled with kidney disease and the importance of helping all patients find a voice in the public policy process. Additionally, Representatives Shelly Berkley and Mark Kirk addressed the reception by pledging their commitment to making lives better for all individuals affected by CKD.
On March 13, PLU patient advocates were able to showcase the skills they developed from the previous days training while meeting with their Represenatives on Capital Hill. During WKDpatient advocates met with over 90 U.S. House and Senate offices!
PLU patient advocate Zach Brooks of Los Angeles, California found his experience on Capital Hill for WKD to be “extremely beneficial and rewarding”.
Interested in becoming an advocate for change for all individuals affected by CKD, organ donation or transplantation? If so click here.
“People Like Us” Ask The U.S. Congress To Support Additional Medicare Benefits
On September 17-18, 2007, “People Like Us” members and NKF Affiliate staff from Georgia, North Carolina and South Carolina traveled to Washington D.C. to learn how to become successful patient advocates, hear about public policy, and meet with key members of their state U.S. Congressional delegations. “People Like Us” members who participated in these advocacy activities included dialysis patients and transplant recipients who learned how to effectively communicate their personal stories to elected officials and their staffs, while asking that they support changes in Medicare that would provide pre-dialysis education courses and an extension of coverage of immunosuppressant drugs past the current 36 month period following a transplant. “People Like Us” members successfully convinced several Members of Congress to support these initiatives, and sign on as cosponsors of H.R. 3282, the “Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2007.” For more information on this and other kidney disease legislation, and how YOU can become involved, please visit our legislative action center and join the “People Like Us” take action network by clicking here http://capwiz.com/kidney/home/
“World Kidney Day” 2007
NKF Hosts “People Like Us” Patient Advocate “Fly-In,”
Congressional Reception, Kidney Disease
Screenings on Capitol Hill
The National Kidney Foundation (NKF) marked the second annual “World Kidney Day”on March 8 th with a Capitol Hill “fly-in” of NKF People Like Us advocates. The fly-in was part of a nationwide “World Kidney Day” outreach effort led by NKF and its Affiliates to build awareness of kidney disease and educate the public about the importance of early detection, risk factors and family health history.
World Kidney Day activities on Capitol Hill began the evening of March 7 th with a Congressional reception hosted by NKF. U.S. Representatives Jim McDermott (D-WA) and Mark Kirk (R-IL), co-chairs of the Congressional Kidney Caucus, addressed the standing room only crowd. Attendees included members of Congress, congressional staff, and others within the kidney community.
On World Kidney Day, 24 People Like Us patient advocates met with 90 U.S. House and Senate offices. They shared their personal stories of living with kidney disease and urged the support of legislation that would create health education classes for Medicare beneficiaries with advanced kidney disease. The People Like Us members also advocated for expanding the Chronic Kidney Disease Program at the Centers for Disease Control and Prevention. This program, which was started in 2006, supports community-based early detection and treatment initiatives aimed at populations at high-risk for chronic kidney disease.
Additionally, the NKF of Illinois drove its state-of-the-art kidney mobile to Washington, DC for World Kidney Day and held kidney screenings at the base of the Capitol. The National Capital Area Affiliate also conducted screenings for Members of Congress and staff in the Hart Senate Office Building.
More information about World Kidney Day and other National Kidney Month activities is available at www.kidney.org.
NKF Coordinates Congressional Fly-In for Patient Advocates
On April 26, 2006, seven NKF “People Like Us” patient advocates called on the U.S. Congress to fund the Organ Donation Recovery and Improvement Act of 2004. This law provides provisions for living donor expense reimbursement and funding for research grants into new methods of organ recovery, preservation and transportation. Though it was signed into law in 2004 by President Bush, it has yet to receive any funding for implementation.
“People Like Us” members met with, shared their personal stories and provided facts about the importance of organ donation to U.S. Senators, Representatives and their staffs. “People Like Us” member Natalie Mena, an Iowa resident whose teenage son Robbie received a transplant at the age of 1, spoke passionately at a Senate luncheon to raise awareness about organ donation. Other speakers included Senator Byron L. Dorgan (D-North Dakota), a donor father and champion of organ donation issues on Capitol Hill, and Dr. Kenneth Chavin, a transplant surgeon from the Medical University of South Carolina.
In addition to Natalie and Robbie, other NKF “People Like Us” patient advocates, Jim Dunham, Jack Fassnacht, Jean Reyes de Gonzalez, Carolyn Price, Debra Washington and representatives of various transplant organizations traveled to Capitol Hill to deliver a strong message to the U.S. Congress: “More Donations with Appropriations!”
Click here to see pictures from the event:
http://www.kidney.org/news/newsletter/newsletters506advocates.cfm
NKF and People Like Us thank HHS and Federal Government
In a gesture of thanks to the federal government for the tremendous success of Medicare’s End Stage Renal Disease (ESRD) program, the National Kidney Foundation (NKF) presented a proclamation to HHS Secretary Michael Leavitt on behalf of chronic kidney disease patients and their families… 
To kick off the People Like Us initiative, the NKF held a series of advocacy and empowerment activities in Washington, D.C. in May 2005. One hundred advocates – patients and family members – were recruited from around the country to participate. People Like Us participants learned about the various aspects of advocacy, the need for and importance of their participation in both national and grassroots public policy initiatives, and the skills required to become persuasive and confident spokespeople. NKF, along with the Congressional Kidney Caucus, also hosted a reception on Capitol Hill to announce the establishment of, and to encourage lawmakers to work with People Like Us before acting on legislation that would affect the care of kidney patients, and organ donors and recipients. Read more about the PLU program launch.
