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.
Saturday, May 14, 2016
Wednesday, May 11, 2016
CREATING FAIR AND EQUITABLE ORGAN DONATION
https://www.facebook.com/UnitedNetworkForOrganSharing/?fref=photo
Monday, May 9, 2016
WHY WE NEED TO BE MORE ACTIVE ON SOCIAL MEDIA
WHY WE NEED TO BE ACTIVE ON SOCIAL MEDIA
By Jim Myers, Kidney Advocacy Committee LiaisonWHY WE NEED TO BE ACTIVE ON SOCIAL MEDIA
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!
USING SOCIAL MEDIA TO AFFECT PUBLIC POLICY
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
- Meetings in Washington, DC
- Local (District) meetings and town halls
- Dialysis clinic visits
- Local NKF events, like Kidney Walks or KEEP Healthy screenings
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:
- Org- Petition supporting kidney donors’ rights
- I Petitions.com
- Social Bright – a directory of petition sites
- We the People – petition the Whitehouse
Questions? Contact me at kidneystories@hotmail.com or www.facebook.com/jamesmyers3.
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! http://www.chicagotribune.com/suburbs/post-tribune/opinion/ct-ptb-davich-kidney-donor-found-st-0508-20160506-story.html
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.
jdavich@post-trib.com
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 https://www.kidney.org/.
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.
jdavich@post-trib.com
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 https://www.kidney.org/.
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© 2016, Post-Tribune
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