Leaders from summit on home dialysis release recommendations

Read the following article from Nephrology News & Issues about the March 2012 home dialysis summit.

Leaders from summit on home dialysis release recommendations

 

Seeking stories from people affected by Medicare’s 36-month cut off for immunosuppressive drugs

One of the co-sponsors of the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients bill is looking for stories of patients who have been directly affected by Medicare’s 36 month cut off of coverage for immunosuppressant drugs.

If you are a kidney recipient:
Do you have a plan in place for how to pay for your meds once Medicare’s coverage ends? Have you already passed the 36 months covered by Medicare? Have you had to skip any meds due to being unable to pay for them?

If so, please email us with your story: peoplelikeus@kidney.org

 

2012 World Kidney Day fly-in success!

On March 7- 8th, 2012, twenty NKF patient and family advocates gathered in Washington, D.C. to increase their congressional delegations’ awareness of Chronic Kidney Disease.  Five NKF staff members participated in the two-day event as well.  This was one of the most impressive and diverse group of advocates we have brought to Congress.  It included four dialysis patients (three on in-center hemo, one on peritoneal dialysis), six kidney transplant recipients, four living donors (including two non-directed donors), and two chronic kidney disease patients, and four family members of CKD patients.

The advocates, selected from over 175 applicants to NKF from across the country, were joined by approximately 100 others at the 7th annual World Kidney Day Congressional Reception on March 7th.  Six Members of Congress, including Congressional Kidney Caucus Co-Chairs Reps McDermott (D-WA) and Marino (R-PA), attended the reception and gave encouraging remarks to the participants.  The event also featured special guest Lorenzo Alexander from the Washington Redskins, a strong and tireless spokesperson for the NKF at many of our local events.

The NKF advocates attended meetings in more than 80 House and Senate offices, at which they discussed a diverse variety of issues including Medicare immunosuppressive drug coverage for kidney transplant recipients; funding for the Chronic Kidney Disease program at the Centers for Disease Control and Prevention (CDC); and payment for oral drugs under Medicare’s bundled payment system.  Within the week following these successful meetings, Senator Boxer (D-CA) and Reps. Capps (D-CA) and Cohen (D-TN) agreed to cosponsor S. 1454 and H.R. 2979 to extend Medicare coverage of immunosuppressive drugs.  We anticipate having continued success convincing more Members of Congress to sign on to this legislation in the coming weeks.

We have been in frequent contact with many of the advocates since the fly-in and they remain very eager to help move our issues forward.  We are already looking forward to World Kidney Day 2013, where we hope to be able to host our greatest number of advocates ever! 

NKF Participates in National Summit on Home Dialysis Policy

 

For Immediate Release:                                                                               Contact: Ellie Schlam

March 28, 2012                                                                                  (212)889-2210×143/ellies@kidney.org

 

NKF Participates in National Summit on Home Dialysis Policy

New York, NY–While 398,000 patients in the U.S. receive dialysis treatment for kidney failure, only ten percent dialyze at home.   A recent report in the National Kidney Foundation’s American Journal of Kidney Diseases  suggested that as a result of systematic barriers, patients are not always receiving the option of home dialysis, despite the therapy’s advantages in terms of convenience for patients and cost-effectiveness for the health system.  The obstacles to home dialysis included inadequate education, excessive regulation and provider philosophy and practice.

“ The number of dialysis patients in the U.S. is growing and the nation’s health policy is shifting.  Now is the time for the health care community to join forces to facilitate the best treatment options for kidney patients,” says Dr. Beth Piraino, the report’s co-author, NKF’s President Elect and a panelist in the first-ever National Summit on Home Dialysis Policy. The Summit, to be held on March 29 at the Ronald Reagan Building and International Trade Center in Washington, DC, will bring together patient groups, clinicians, industry and payers to address multiple barriers.

Delegates representing a variety of dialysis stakeholders will meet for a day-long series of roundtable to assess:

• Educational, Training and Implementation Challenges
• The Impact of the National Reimbursement System
• Quality Measures and Initiatives; and
• The Innovation Environment

Key federal officials and policymakers will join the delegates and a consensus report will be produced at the end.

“ Home dialysis, which allows a patient to maintain a more normal lifestyle, is a very attractive option to many individuals facing the burden of incipient dialysis. Studies show that the majority of patients beginning in-center hemodialysis (HD) are unaware of the option to dialyze at home or receive very scanty information about this option.  Once informed, 40% or more of patients are interested in this treatment option, and yet less than 10% actually initiate home dialysis,” says Dr. Piraino.

“This summit will help us focus on these barriers, which can be overcome through the collective coordinated action of dialysis organizations, the nephrology team and the government, all striving to ensure that the patient is educated and afforded proper options and is at the center of this process.  Our ultimate goal is to provide a supportive national environment for more patients to have access to dialysis in the home,” continues Piraino.

For more on the barriers and study visit http://www.kidney.org/news/newsroom/nr/Kidney-Failure-Patients-Missing-Out.cfm

The National Kidney Foundation is dedicated to preventing and treating kidney and urinary tract disease, improving the health and well-being of individuals and families affected by these diseases and increasing awareness of all organs for transplantation. For more information on home dialysis and kidney disease, visit www.kidney.org

A First Hand Look at World Kidney Day 2012 from the Eyes of a Kidney Transplant Recipient

by Shar Carlyle

As a woman with polycystic kidneys who rarely ventures far from home and hearth, it takes a pretty big gust of wind to set me sailing.  NKF’s 2012 World Kidney Day provided the right motivation for taking on a such a physically challenging journey.  This was a rare opportunity to take part in our political process in support of a worthy cause, H.R. 2959 and S. 1454, bills that will give more kidney transplant recipients the life supporting immunosuppressant medication they need.   Despite everything we’ve been reading of late about how scandalous the parties have become, World Kidney Day was our chance, as citizens and kidney patients, to speak with powerful politicians and their trusted health aides and have a chance to be heard.

I loved representing kidney patients and their families in Washington D.C.!   Upon arrival at our hotel, I met NKF patient advocates from all over the nation.  The next day we joined up with the Dialysis Patient Citizens, aligning with their causes in unity.  That evening, at the Congressional tea, we heard moving testimonials from Congressman Jim McDermott D (WA), Congressman Silvestre Reyes D (TX), Congressman Larry Kissell D (NC),  Congressman Tom Marino R (PA), remarks were read from former Senator Bob Dole, there was an inspiring speech by Laverne Burton from American Kidney Fund, and a celebrity appearance by Lorenzo Alexander of the Washington Redskins (NFL). On World Kidney Day, March 8th, to my surprise and delight I was teamed with Troy Zimmerman, VP of Gov’t Relations for the National Kidney Foundation.  Together we went to two Senators, and four Congresspersons offices where we put our Soapbox training into action.  I was thrilled to learn that we gained one co‑sponsor of the bill within three days, and Senator Boxer quickly followed suit. While we still have hurdles in the Budget committees, I am confident that this bill will make sense to all, once they have learned more about it. The most memorable part was meeting people from all around the country, for a common purpose.  What I learned is that we all can come together, regardless of our political persuasion to do the right thing!   It was an honor and a privilege speaking on behalf of thousands of people who could not be there.  Thank you, NKF!

Shar Carlyle, M.A.
Program Director, Kidney Community Education, “The KCE Program”

Have you contacted your Members of Congress?

Have you contacted your Members of Congress to ask for their support of the Immunosuppressive Drug Coverage Bill?  If you haven’t yet, please do so!  Sign up for our Take Action Network and you will receive email alerts when action is needed on specific legislation.  You can also easily contact your Members of Congress through this program.

Click on the Immunosuppressive Drug Coverage page link to the right, and you’ll be taken to a page with the sponsors and co-sponsors of the Immuno Bills for both the House and the Senate.  If you see your Representative or Senator on this list, please send them an email to thank them for their support.  If you don’t see your Member of Congress listed, share your personal story with them and ask that they support this important piece of legislation!

A bill to amend title XVIII of the Social Security Act to provide for extended months of Medicare coverage of immunosuppressive drugs for kidney transplant patients and other renal dialysis provisions.

H.R. 2969
Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011
112^th Congress: 2011-2012
You can also read about the status of H.R.2969 here.

S. 1454
Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011
112^th Congress: 2011-2012
You can also read about the status of S.1454 here.

Medication Compliance

Mary Wu was 12 years old when she received her second kidney transplant. As if dealing with adolescent angst wasn’t hard enough, Mary now had to remember to take an arsenal of medication on a daily basis. See how Mary came to terms with her new lifestyle—and realized how blessed she is to have received the gift of life: Medication Compliance

 

Join the National Kidney Foundation on World Kidney Day: March 8, 2012

The National Kidney Foundation (NKF) is celebrating World Kidney Day on March 8, 2012! The goal of World Kidney Day is to raise awareness about the importance of the kidneys and support the education and understanding that kidney disease is common, harmful and treatable.

To help us reach our goals, NKF will host a fly-in to Washington, DC to empower and train individuals to become involved in federal legislation surrounding kidney disease, dialysis, donation and transplantation. As a 30 year survivor of end stage kidney disease, I attended the first advocacy fly-in for NKF and it changed my life. I was honored to be given the opportunity to become engaged in the policy discussions around issues that are important to me and so many others. We are seeking articulate chronic kidney disease patients, individuals on dialysis, kidney transplant recipients and living kidney donors from around the country who are available to come to Washington, DC for a half day training the afternoon of Wednesday, March 7, a Congressional reception that evening, and meetings with their members of Congress or their staff members on Thursday, March 8. I highly encourage you to take advantage of this chance to have your voices heard by those who can most affect change, because who better than you to tell your story on the impact of kidney disease!

If you would like to join us in celebrating World Kidney Day by attending this advocacy training and fly-in to Washington, DC, please complete the application online available here. Due to funding restraints, only a handful of candidates will be chosen to participate, so please complete your application as soon as possible. If you have any questions, please contact Erin Kahle at the National Kidney Foundation at 800-622-9010 ext 213 or peoplelikeus@kidney.org.

Thank you for your consideration.

Wishing you a peaceful and joyful 2012.

Celeste Castillo Lee
Chair, Patient & Family Executive Council
NKF

“I Am Hope” by Jessica Melore

NKF transAction Council Executive Committee Member and heart recipient Jessica Melore is celebrating her 30th birthday this month with a very special message:

“I Am Hope” by Jessica Melore

You can read more about Jessica’s inspiring story here.

 

 

Sign the petition to Congress to support the immuno bill

The American Transplant Foundation has started a Petition to Congress to support the immunosuppressive drug extension bill.  Sign it and share it with others today!