Saturday, May 14, 2016


ANNA Supports the Living Donor Protection Act of 2016
The  American  Nephrology  Nurses  Association  (ANNA)  is  a  professional  nursing  organization  of approximately 9,000   registered   nurses   practicing   in   nephrology,   transplantation,   and   related therapies.  ANNA promotes  excellence  in  and  appreciation  of  nephrology  nursing  so  we  can  make  a
positive difference for people with kidney disease.
Every  year,  a  significant  number  of  United  States  citizens  are  diagnosed  with  kidney  disease.  More than 20 million Americans
have kidney disease and more than 600,000 have kidney failure, known as end-stage renal disease (ESRD). For those suffering from kidney disease and ESRD, treatment options are limited to hemodialysis, peritoneal dialysis, or transplantation. Transplantation is considered the more effective and preferred treatment course at a cost of $32,000 per patient per year, in comparison to  $87,000  per  patient  per  year  for  hemodialysis.  Dialysis  is  a  significant  burden  on  taxpayers,  as nearly  all  patients  with  kidney failure  are  Medicare  beneficiaries.  Patients  with  ESRD  account  for
nearly 7% of Medicare costs, but make up less than 1% of Medicare patients, costing taxpayers nearly $35 billion annually. According to the American Society of Transplantation, in 2014 more than 101,000 Americans were on the  transplant  waiting  list,  a  10%  increase  from  2010.  Unfortunately,  there  has  been  a  considerable
decline  in  kidney  donations.  Living  organ  donors  constitute  nearly  a  third  of  transplants,  and  more than 10% of living organ donors experience difficulty with insurance after their procedures because of discriminatory practices. Giving the gift of life should be made easier, not more difficult. The Living  Donor  Protection  Act  of  2016 (H.R.  4616/S.  2584)  ensures  that  those  healthy  and  fortunate enough  to  give  the  gift  of  a  kidney,  or  other  organ,  are  not  discriminated  against  by  their  insurance companies  or  place  of  work.  The  legislation  seeks  to  prohibit  insurance  companies  from  denying coverage  or  increasing  premiums  of  life,
disability,  and  long -term  care  plans.  The  bill  also  clarifies
that  organ  donation  surgery  qualifies  as  a  serious  health  condition,  and  that  donors  can  use  the Family  and  Medical  Leave  Act  (FMLA)  for  time  to  recover  after  surgery.  Finally,  the  bill  updates education  materials  on  the  benefits  of  live  donor  transplantation  and  the  implications  of  live  organ donation.
There is broad group of national stakeholders that support this legislation, including patient groups, advocacy organizations, and health professional provider associations and societies. Supporters of the legislation are committed to promoting organ donation and
ensuring that the rights of living donors are protected. Recommendation : ANNA urges Members of Congress to cosponsor the Living Donor Protection Act of 2016  (H.R.  4616/S.  2584).
The  bill  will  protect  living  organ  donors  from  increases  in  insurance premiums  and  will  ensure  they  are  provided  job  security,  through  FMLA,  while taking time to recover.

Wednesday, May 11, 2016

Monday, May 9, 2016



By Jim Myers, Kidney Advocacy Committee Liaison
Social media is a fun and interesting way to communicate.  It is also a great tool for raising awareness for kidney disease! Why use social media?  It is one of the most authentic ways to communicate to your legislators.  Additionally, it is also a great way to amplify your message.  During an average 8 hour day at a kidney table, I might see 50 people.  Over the same period of time on social media, I reach over 10,000 people, sometimes as many as 100,000 persons in a week!
Most elected officials use multiple social media accounts, including Facebook, Instagram, LinkedIn, and Twitter. The form and content of communication is only limited by your imagination. Many kidney organizations have public policy action pages to help you advocate and shape public policy, like this one from the National Kidney Foundation, that also allow you to “tell your story” to your elected officials.
You can use social media to:
  • Inform, discuss, update, and influence others about kidney disease policy and legislation
  • Develop a collective voice and collaborate
  • Share knowledge about kidney disease
  • Influence the behavior and decisions of your elected officials
You can also use social media to invite elected and government officials to join events such as:
There are subtle differences between how each social media platform can be used to reach elected officials.  Facebook is useful in providing information, photos, and video, as well as sending requests and messages of appreciation. Twitter is effective for engaging in a conversation with your elected official.  Commenting on Instagram can help put a face to your name and issue.
Blogs are also a great tool to express your point of view or share an idea. You can use them to create original content, add photos and video, or host an opinion poll.  Free, quick and easy, blogs platforms, such as WordPress and Tumblr, can give you instant visibility. Make sure you ask all your friends to like your blog and Facebook pages, and comments, and to share them. You can also share the page with general public, on other kidney pages, and in kidney groups to raise your circulation.
By establishing constant contact with your elected officials and their staff, you can become a trusted source of information related to kidney issues and legislation. This trusted relationship can help you get attention when sharing content (I like to send my government officials links to posts on the NKF’s Advocacy in Action blog) or when you ask them to co-sponsor a bill.
Using other media to promote a bill or issue
There are several websites that help you prepare, solicit, and transmit petitions that are designed to promote a kidney disease bill or important kidney issue. They include:
No matter what form of advocacy you choose, social media can make you more effective and give you a broader reach than other forms of advocacy.
Questions? Contact me at or
About Jim
James Myers is the Statewide Advocate for the National Kidney Foundation for the State of Indiana.  He is a member of the Kidney Advocacy Committee.  He is the inaugural winner of the 2016 Social Media Advocate Award for the American Association of Kidney Patients.  On April 27, 2016, he received a kidney transplant!

Tireless Advocate Organ Donation gets the Call!!

Tireless advocate for organ donation finally gets 'the call'

James Myers looked weary but cheerful when he returned home from an Indianapolis hospital with his little bundle of joy.
It weighed a quarter of a pound, and was the size of a fist. It's name is "Woody."
"It's a family name," said Myers, 61, of Gary.
After nearly four years of waiting and wondering, Myers finally got the call he had been praying for, hoping for, advocating for. It came on April 26.
At 11 a.m. that day, Myers posted on his Facebook page: "I just got THE call. IU says they have a kidney for me!"
This post was dramatically different from hundreds of previous posts over the past few years, many which read like this one from April 18 of this year: "My name is Jim Myers, from Crown Point, IN, and I am an ESRD patient currently on dialysis, awaiting a transplant. I am on the list. If you are interested in becoming a donor…"
I read dozens of those somber posts, each one pleading for a life-saving transplant amid other social media friends who posted about their pets, chronic gripes or daily errands. I always wondered how Myers felt while reading such nonsense, relatively speaking.
"I am a type O blood type," Myers wrote again and again to friends, followers and strangers. "All medical costs are covered by insurance and incidental costs can be worked out."
When I first met Myers in 2013, he sat quietly in a large chair inside the Fresenius Medical Center in Crown Point. He read a newspaper while his blood was artificially cleansed of waste by a whirring dialysis machine that beeped every few seconds.
With a blanket draped over his legs and a catheter connected to his chest, Myers sat patiently for hours, as most dialysis patients must do. He visited there three times a week for at least four hours each time to undergo hemodialysis, which replaces the function of his failing kidneys.
Myers suffered from polycystic kidney disease, which took the lives of several family members, including his father, he said. Though Myers was diagnosed in his younger days, his positive lifestyle choices the past three decades only delayed the inevitable.
His genetic fate caught up to him in 2012 and he had been on dialysis ever since. "I have no choice. You either submit to dialysis or you die," Myers told me that day.
Chronic kidney disease may be caused by diabetes, high blood pressure and other disorders. Early detection and treatment can often keep chronic kidney disease from getting worse. When kidney disease progresses, it may eventually lead to kidney failure, which requires dialysis or a kidney transplant to maintain life.
This was the dilemma Myers faced each day, each week, each month.
He didn't settle for only waiting and wondering or for posting pleading messages on social media for a life-saving transplant.
Myers became a tireless advocate for kidney donation, organ donation, live donor legislature and anything related to kidney disease. He put a local face on the national "Share your spare" live donor campaign.
He became a state advocate for the National Kidney Foundation, and an ambassador for Dialysis Patient Citizens and the Polycystic Kidney Disease Foundation.
He became an outspoken activist on behalf of thousands of dialysis patients throughout Northwest Indiana. He became their voice. And their hope.
He traveled to Washington, D.C., to meet with lawmakers, including U.S. Rep. Pete Visclosky, D-Merrillville, and U.S. Sen. Joe Donnelly, D-Ind. On behalf of the Kidney Advocacy Committee, he advocated against budget cuts and for the Living Donor Protection Act.
Myers alerted us that he was among more than 400,000 Americans with irreversible kidney failure. And that more than 26 million people in this country struggled with chronic kidney disease, a figure that's growing each year. Millions of others are at increased risk but have no clue about it, according to the National Kidney Foundation.
"It could be any of us someday sitting in the same dialysis chair as Myers," I wrote in 2013.
Since then, I've talked with several other Northwest Indiana residents who were diagnosed with kidney disease or kidney failure and had to undergo dialysis. Some of these patients are kids.
"These children have unique issues among dialysis patients, and are one of the fastest growing dialysis groups," Myers told me recently.
This is why he started a new foundation for pediatric dialysis patients and their parents. It's something Myers is very proud of, and rightfully so.
He has met hundreds of patients through his advocacy. His Facebook page lists post after post for other people also waiting for that phone call. The same call Myers received April 26.
"Jim, we have a kidney for you," the nurse said.
That day, Myers was admitted into Indiana University Health in Indianapolis, in the organ transplant unit. His transplant surgery took place the next day, April 27, under the care of Dr. William Goggins.
The procedure went smoothly and Myers said there were no serious problems.
Because Myers is polycystic, surgeons removed only one kidney and transplanted a new one. They will remove his other kidney at another time.
Myers is thrilled to have the one kidney. Still, he's now waiting and wondering if the anti-rejection drugs will allow his body to accept it. Only time will tell.
He's not sure if all his advocacy played a role in getting that call. Or maybe it was fate. Or divine intervention. Or random luck. He also doesn't know the donor of his new kidney. He's forever thankful.
Within hours after he returned home, his tireless advocacy got transplanted into a new campaign. He asked for signatures on his petition for the Living Donor Protection Act.
"I got my chance, can you help someone else get theirs?" he asked.
Twitter @jdavich
Learn more:
For more information on kidney disease or to become a living donor or organ donor, call the National Kidney Foundation at 800-622-9010, or visit
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