Ask the Doctor
Questions about kidney disease? Risk factors? Signs and symptoms? Are you concerned about yourself, a friend or family member? Ask Dr. Spry.
People Like Us Get's Results Archive
- World Kidney Day, 2009
- Patient Advocate “Fly-In” held on May 21-22, 2008
- "People Like Us" continues to grow
- "People Like Us" Ask The U.S. Congress To Support Additional Medicare Benefits
- “World Kidney Day” 2007
- NKF and People Like Us thank HHS and Federal Government
World Kidney Day, 2009
World Kidney Day, 2009
By Douglas Harrell, donor husband
On March 11th and 12th, 70 People Like Us advocates from around the country converged on Washington D.C. to participate in the NKF’s People Like Us World Kidney Day fly-in. Our delegation was composed of people on dialysis, transplant recipients, and donor family members like me. Our mission was to raise awareness among our nation’s Congressional Representatives and Senators of chronic kidney disease, and to educate them about two new bills being introduced for which we need their support.
Under current law, Medicare pays for dialysis for most kidney patients at a cost of approximately $70,000 a year, and it will pay the cost of a transplant. However, Medicare will only pay for 36 months of immunosuppressant drug coverage. Those who cannot afford the $17,000 per year price tag after this coverage expires risk losing their transplant. This is a tragedy not only for them, but also for the donor or donor family who gave them their kidney. This policy is short-sighted since losing a transplant means returning to dialysis at 4 or 5 times the cost of the immunosuppressant drugs. The bills, S.565 in the Senate and H.R. 1458 in the House, propose extending immunosuppressant drug coverage for the life of a kidney transplant.
In Washington, I met people on dialysis for the first time, and it was a real eye opener. Not only was the trip difficult and tiring, but many of them had to get up at 4:30 A.M. for their dialysis before the rest of our scheduled activities. I was impressed by their courage and their struggle to continue to live full lives, and it made me even more passionate about doing everything I can to promote organ donation.
On the first day, we received several hours of training on the issues, and pointers on how to have a successful meeting with our elected representatives. That evening, we attended a reception on Capitol Hill with members of the Congressional Kidney Caucus. Vincent Curatola, best known as Johnny “Sack” Sacramoni on “The Sopranos” told us how his late father, Constantine, was struck suddenly with kidney failure, and after a few years on dialysis lost the will to live. Since then, Mr. Curatola has devoted himself to fighting kidney disease. Washington Redskins Safety Reed Doughty told us about his son, Micah, who was born prematurely and suffered kidney failure. Micah was kept alive by dialysis until he was old enough to receive a transplant from Reed’s wife, Katie, and now Reed generously volunteers his time promoting kidney and donation issues.
On Thursday, March 12th, World Kidney Day, we all set out for our appointments with our House members and Senators in their offices on Capitol Hill. In my case, my two fellow Delawareans and I had meetings with the staffs of Senator Carper, Senator Kaufman, and Representative Castle. As we learned in our training, it is the staffers who do the background work that assists the congressperson to make a decision on each bill. Given the large number of such meetings that staffers have, I was not sure of the reception we would get. I was very pleasantly surprised to find that in each case the staffers were very interested in the issue and, when unfamiliar with a point, took copious notes.
It was both a privilege and a wonderful experience to participate in World Kidney Day and do my small part to help kidney recipients hold onto their transplants. It was also a marvelous civics lesson. Seeing first hand that the office doors of our elected representatives are open to private citizens, and that they are available to listen to us renewed my pride in our democracy and filled me with hope.
Even if you can’t go to Washington, you can do your part. Call or write your Representative and your two Senators and urge them to support the immunosuppressant drug coverage bill (House — H.R.1458; Senate — S.565). I can’t guarantee they will, but I can promise you that they will listen. While you’re at it, you can urge your Representative to join the Congressional Kidney Caucus, too.
Patient Advocate “Fly-In” held on May 21-22, 2008
NKF and DPC Work Together for Change on Capitol Hill!
The National Kidney Foundation (NKF) and Dialysis Patient Citizens (DPC) teamed up on May 22 to urge lawmakers to pass a bill that provides 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 People Like Us 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 Capitol 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.
While in Washington, DC:
- NKF Advocates met with 38 offices on Capitol Hill
- NKF Advocates and DPC Ambassadors met with a total of 83 offices on Capitol 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 People Like Us member, Amy Nash’s experience while in Washington D.C. on May 21-22, 2008 click here
"People Like Us" continues to grow
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.
Top members of congress contacted by Take Action Network:
- Sen. Kay Bailey Hutchison (TX)
- Sen. John Cornyn (TX)
- Sen. Barbara Boxer (CA)
- Sen. Dianne Feinstein (CA)
- Sen. Hillary Clinton (NY)
Last Action Alert Info (including top 3 rep's to receive alert, top 3 house members to receive alert): sent only to house members
"Congratulations! ESRD provisions in the Medicare bill become law!"
Sent 7/10/2008
Total messages sent: 310
Sen. John Cornyn (REP-TX)
Sen. Kay Bailey Hutchison (REP-TX)
Sen. Bill Nelson (DEM-FL)
Reinforce the Medicare Vote Now!
Sent 7/11/2008
Total messages sent: 610
Sen. Arlen Specter (REP-PA)
Sen. Robert Casey (DEM-PA)
Sen. Charles Schumer (DEM-NY)
Top 5 states with the most registered Take Action Members
New York - 510 registered advocates
Florida - 423 registered advocates
California - 418 registered advocates
Pennsylvania - 312 registered advocates
Texas - 278 registered advocates
“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
“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 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...