The 4th Annual Kidney Patient Summit

Advocacy in Action

hea04888Nearly 150 advocates from six kidney organizations will converge on Capitol Hill, March 6-7, to meet personally with lawmakers and put a human face on kidney disease during the 4th Annual Kidney Patient Summit, organized and led by the National Kidney Foundation (NKF). This largest event to date brings together, in a unified voice, NKF’s Kidney Advocacy Committee members and advocates from Alport Syndrome Foundation, Polycystic Kidney Disease Foundation, NephCure Kidney International, Home Dialyzors United and American Association of Kidney Patients. 

The attendees will share their stories and urge Members of Congress to co-sponsor the Living Donor Protection Act, which would prohibit discrimination in life, disability or long-term care insurance for living organ donors and protect jobs by adding living donation to the Family Medical Leave Act; support a pilot program which seeks to improve early detection, care and outcomes for people with chronic kidney disease (CKD); and support…

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The 4th Annual Kidney Patient Summit

The 4th Annual Kidney Patient SummitPosted on March 5, 2017 by nkf _advocacyhea04888Nearly 150 advocates from six kidney organizations will converge on Capitol Hill, March 6-7, to meet personally with lawmakers and put a human face on kidney disease during the 4th Annual Kidney Patient Summit, organized and led by the National Kidney Foundation (NKF). This largest event to date brings together, in a unified voice, NKF’s Kidney Advocacy Committee members and advocates from Alport Syndrome Foundation, Polycystic Kidney Disease Foundation, NephCure Kidney International, Home Dialyzors United and American Association of Kidney Patients. The attendees will share their stories and urge Members of Congress to co-sponsor the Living Donor Protection Act, which would prohibit discrimination in life, disability or long-term care insurance for living organ donors and protect jobs by adding living donation to the Family Medical Leave Act; support a pilot program which seeks to improve early detection, care and outcomes for people with chronic kidney disease (CKD); and support funding for CKD programs run by the Centers for Disease Control and Prevention, National Institute of Diabetes and Digestive and Kidney Diseases, and Health Resources and Services Administration.At the Summit, individuals who have kidney disease, dialysis patients, living donors, family members and caregivers will be united by the affirmation and hashtag

Source: The 4th Annual Kidney Patient Summit

KIDNEY FOR MEL

This is my friend, Melissa Tuff, who is seeking a kidney donor. She is also an advocate for the NKF who fights for all us kidney patients. Please like and share her post. If you can please get tested for Mel.

Mel’s Kidney Page on FB: https://www.facebook.com/groups/MelNeedsAKidney/

To show you what a great advocate she really is, here is a letter that she wrote to Alan Grayson:

“Letter from Melissa Tuff to Alan Grayson

James Myers

Crown Point, IN

Oct 16, 2016 — Alan Grayson I would like to implore you to read over and sign on to show your support for H.R. 6139 the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2016. As an 11 year kidney recipient who is now among the 120,000+ waiting on another organ I have struggled many times over the years with lapses in prescription coverage which have caused damage to my transplant when I have had to make my immunosuppressive meds stretch by taking reduced doses just to try and prevent fully rejecting my kidney during the times in which I was denied coverage by my employers because I would “make their premiums too high” or when Medicare and Medicaid were not options because my 36 months of coverage post-transplant had been exhausted. I lost my house, my car, and essentially have went bankrupt to maintain my gift of life for the past 11 years and in all honesty if it meant losing everything to keep my kidney versus going back on dialysis, I would live in a cardboard box under a bridge any day of the week! This gift has been such an incredible blessing but the stress of continued accessibility to my lifeline or medications can be quite daunting which is why so many patients have been reluctant to even get a transplant. So please, for one moment step outside of your experience and put yourself in our (transplant recipients) shoes. Consider the agony of fighting so hard to get your life back only to constantly worry if you can afford to keep it. In conclusion I would just like to say thank you for taking the time out of your busy schedule to read this, and I sincerely hope that you will find it in your heart to support this act and encourage your colleagues to do the same. God bless.

Melissa Tuff, Cape Coral
Florida State Representative for the National Kidney Foundation.“

Mel Needs A Kidney

This is my friend, Melissa Tuff, who is seeking a kidney donor. She is also an advocate for the NKF who fights for all us kidney patients. Please like and share her post. If you can please get tested for Mel.

Mel’s Kidney Page on FB: https://www.facebook.com/groups/MelNeedsAKidney/

To show you what kind of advocate she really is, here is a letter that she wrote to Alan Grayson:

Letter from Melissa Tuff to Alan Grayson

James Myers

Crown Point, IN
Oct 16, 2016 — “Alan Grayson I would like to implore you to read over and sign on to show your support for H.R. 6139 the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2016. As an 11 year kidney recipient who is now among the 120,000+ waiting on another organ I have struggled many times over the years with lapses in prescription coverage which have caused damage to my transplant when I have had to make my immunosuppressive meds stretch by taking reduced doses just to try and prevent fully rejecting my kidney during the times in which I was denied coverage by my employers because I would “make their premiums too high” or when Medicare and Medicaid were not options because my 36 months of coverage post-transplant had been exhausted. I lost my house, my car, and essentially have went bankrupt to maintain my gift of life for the past 11 years and in all honesty if it meant losing everything to keep my kidney versus going back on dialysis, I would live in a cardboard box under a bridge any day of the week! This gift has been such an incredible blessing but the stress of continued accessibility to my lifeline or medications can be quite daunting which is why so many patients have been reluctant to even get a transplant. So please, for one moment step outside of your experience and put yourself in our (transplant recipients) shoes. Consider the agony of fighting so hard to get your life back only to constantly worry if you can afford to keep it. In conclusion I would just like to say thank you for taking the time out of your busy schedule to read this, and I sincerely hope that you will find it in your heart to support this act and encourage your colleagues to do the same. God bless.

Melissa Tuff, Cape Coral
Florida State Representative for the National Kidney Foundation”

A Historic Election

Great post and update!

Advocacy in Action

The presidential election was historic in many regards, including the first woman as a major party nominee and a nominee with no previous public office or military experience.  The Republican party will now have control of the White House, both Houses of Congress, and the possibility of a conservative Supreme Court. Click here to see the NY Times’ election maps.

The question before those of us focused on kidney disease is what will President-Elect Trump and the Republican party do with their new political power?  What will the first priorities be?  What does this election mean for healthcare including insurance plans in the Affordable Care Act (also referred to as “Obamacare”), business’ group health plans, Medicaid expansion, drug pricing reform efforts, and value-based care and delivery system reforms that were implemented under President Obama as a method of improving patient outcomes?

We can expect the President-Elect and Republican Congress…

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