HANDLING YOUR IN DISTRICT MEETING

Soon, your member of Congress will be on recess from Washington, D.C., and available to meet with constituents in his or her home office. This is a great opportunity to meet with your Congressperson or Senators to discuss important legislation that affects patients and families living with polycystic kidney disease (PKD). I have done this many times, and I have a few suggestions based on my experience.
BEFORE YOUR MEETING

• Make your appointment early. Remember that before your Congressperson comes home, he has made plans to hold other meetings outside of his office (groups, speeches, town halls, etc.) and has limited time in his or her office. Call his assistant now and make your appointment as early as possible.
• Send a follow-up confirmation e-mail. As soon as your appointment is set, write to the appointment maker to confirm the date and time of your appointment. Be sure to put it on your calendar. Ten days ahead of the appointment, write to the appointment maker and make sure that date and time are still feasible.
• Be prepared! Make sure you have materials to review with your Representative. You will want to leave a set of these materials behind so your Representative can review them later. 

AT THE MEETING

• Arrive Early. Meetings are usually scheduled one after the other, and no one usually gets more than 15 to 20 minutes.
• Avoid political discussion and stay on message. Remember, kidney issues and legislation are bi-partisan and politically neutral.
• Tell your kidney story! This is the most effective way to advocate for your group. I’ve lost five members of my family to PKD, plus my father. I know what I’m talking about. Your story will be remembered for a long time. My Representatives now repeat my story to me when I show up: “Jim, didn’t you just have a transplant in April?”
• Stick to the talking points provided by the PKD Foundation. Use the material to review or make a PowerPoint presentation that stays on track with the materials.
• Don’t forget your ask! Ask your Representative to support legislation, co-sponsor a bill to help get it out of Committee or support the idea.
• Take a picture. Politicians love to be photographed with their constituents.
• Be mindful of your statements. Your goal is to become your Representative’s go-to person on kidney and PKD issues. You want to build trust to the point where they say, “What does this constituent have to say about this?”

AFTER THE MEETING

• Follow up with a thank-you e-mail. If there were unanswered questions, get answers from the PKD Foundation and follow up with your Representative.
• Use social media! Post your pictures. Tweet your Representative a thank you. Let people know that you met with your Representative and how great the meeting was.
• Stay active online. When you see PKD or kidney issues posted online, engage. The PKD Foundation provides form letters on issues that affect patients and families with PKD. Fill those out and send them to your Representatives.
• Keep your Representative up to date on all important PKD matters. Find their contact information by looking them up online. Your Representatives have webpages with email addresses, Twitter and Facebook pages.

Good luck and remember: You are a great advocate. You are living with these issues and you have the power and the means to educate your Representatives.
Jim Myers is a longtime advocate for PKD and PKD Foundation. After nearly four years of being on dialysis and waiting for a kidney match, Jim got the call earlier this year on April 26. He received his transplant shortly afterward, and continues to advocate for PKD-related legislation and the Living Donor Protection Act.
Read up on our current legislative priorities.

MY BUDDY JOE IS RAISING MONEY FOR A KIDNEY TRANSPLANT

My buddy Joe Chavez-Mosqueda, raising money for his kidney transplant at Five Guys Hamburgers today! Please check out his page and his blog!  PLEASE SHARE!
Link to Joe's Page on National Foundation of Transplants: http://patients.transplants.org/faf/donorReg/donorPledge.asp?ievent=485635&lis=1&supId=436380530&patientPID=17324
Link to today's Benefit Event: https://www.facebook.com/events/132997903790073/
Link to Joe's Blog: http://jwalkingrenalpatientiv-v.weebly.com/
Joe's Story: In the mid-90s, Joseph was diagnosed with diabetes, but he spent many years in denial about what the disease was doing to his body. Then in 2009, a year after undergoing weight loss surgery, he learned his kidneys were failing. He was shocked that so much damage had been done to his body, and he became an advocate for kidney health so he could encourage others to take charge of their health. Doctors now say a kidney transplant is necessary.
During such a difficult time, his wife, Christine, has been his rock and by his side every step of the way. Together, he and Christine have four children and nine grandchildren. He is determined to overcome this health battle, as he wants nothing more than to see his grandchildren become adults. Before his health began to decline, he enjoyed long distance cycling to maintain his weight loss, but doctors have strongly encouraged him to retire from this sport. Most recently, he has taken up walking to stay active. After receiving his transplant, he hopes to continue sharing his story to educate others through his experiences with diabetes, hypertension and end-stage renal disease.
The average kidney transplant costs approximately $250,000. And that’s only the beginning. Even with health insurance, which will cover the cost of the transplant, he faces significant expenses related to the surgery. For the rest of his life, he will need follow-up care and daily anti-rejection medications. Post-transplant medications are very expensive, and they’re as critical to his survival as the transplant itself.
You can help by making a tax-deductible donation to NFT in honor of Joseph. If you'd prefer to send your gift by mail, please send it to the NFT Indiana Transplant Fund, 5350 Poplar Avenue, Suite 430, Memphis, TN 38119. Please be sure to write "in honor of Joseph Chavez-Mosqueda" on the memo line.
Thank you for your generosity!
Joe is working with the University of Chicago. He MUST raise $25,000 before they will do the kidney transplant! Please consider donating to my friend! His next fundraiser is at the Chic-fil-a, at the Southlake Mall in Merrillville, IN on August 1st.

KidneyWorks Conference Concludes in D.C.

Labor Force Initiative Targets Kidney Patients

Patients, Federal Officials, Health and Workforce Data Experts Convene for KIDNEYWORKS™

 

WASHINGTON, D.C.  The KidneyWorks™ Initiative, a new research and policy collaboration aimed at helping Americans with Chronic Kidney Disease (CKD) who are not on dialysis maintain their jobs and slow their disease, was rolled out recently on Capitol Hill by the American Association of Kidney Patients (AAKP) and the Medical Education Institute (MEI).   An estimated 10% of U.S. adults, more than 20 million Americans, have some degree of CKD, ranging from stages CKD I to CKD V (kidney failure).   Millions of Americans afflicted with the earliest stages of kidney disease are currently in the labor force and successfully hold jobs long before the need for renal replacement therapy (dialysis or a kidney transplant) at CKD stage V. 

AAKP and MEI jointly convened the KidneyWorks™ Initiative’s Consensus Conference at the Hall of States Building in Washington D.C. with over thirty national experts in the fields of patient engagement, renal care, health and insurance data mining, labor force data mining, Federal reimbursement, physical exercise, renal social work and vocational rehabilitation.  During the conference, stakeholders identified issues and barriers that interfere with patient goals to stay healthy, remain engaged, continue working and paying taxes. Expert participants formulated strategies and recommendations to help patients slow progression of their disease, successfully manage symptoms, maintain incomes and standards of living and preserve their quality of life. 
The results of the KidneyWorks™ Initiative’s Consensus Conference will be a white paper to be issued in late 2016 that will present the experts’ findings and recommendations for Federal, non-profit and private sector policies and programs that will encourage patients to maintain their employment while they manage their illness.  AAKP and MEI plan to present the white paper recommendations to the United States Congress as well to relevant representatives of the Presidential Transition Team for the President-Elect.  The Consensus Conference was the first of several collaborative actions between AAKP and MEI.

“Chronic kidney disease poses great challenges to patients who need and want to work, but they are not insurmountable and no patient should be encouraged to prematurely leave their job, put their aspirations on hold and go on disability unless it is an absolute medical necessity,” stated Paul T. Conway, president of the American Association of Kidney Patients. Conway is a former Chief of Staff of the U.S. Department of Labor and kidney transplant recipient who has managed kidney disease for over thirty-five years.

“KidneyWorks has assembled an exceptionally talented national ‘dream team’ committed to identifying misperceptions and artificial barriers that keep kidney patients from staying engaged in their careers, and developing practical recommendations that will help us effect change and keep people working despite CKD,”  stated Dori Schatell, MS, Executive Director of the Wisconsin-based MEI.

Working with kidney disease can be challenging and symptoms at earlier stages can include fatigue, headaches, nausea, muscle cramps, shortness of breath, and problems sleeping.  All of these can interfere with work, but symptoms are often treatable.  Having a job that provides an employer group health plan or enough income to purchase a private health plan will help ensure that CKD patients who desperately need preventive care will receive it—and will help them stay active and productive.

Participant experts represented some of the most influential Federal, professional and non-profit and private sector stakeholders directly involved in long-term kidney patient health and employment-related issues.

Stakeholders represented at the Consensus Conference included: 

Patient and Professional Organization:

American Association of Kidney Patients (AAKP)

American Health Quality Association (AHQA)

American Society of Nephrology (ASN)

Kidney Health Initiative (KHI) – (a collaborative of U.S. Food and Drug Administration and ASN)

Medical Education Institute (MEI)
NRAA

Renal Physicians Association (RPA)

Federal Government:

Centers for Medicare and Medicaid Assistance (CMS), U.S. Department of Health and Human Services

Health Resources and Services Administration (HRSA), U.S. Department of Health and Human Services

National Kidney Disease Education Program (NKDEP) within the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH)

Office of Disability Employment Policy (ODEP), U.S. Department of Labor

Private Sector:

Baxter International

CiCoach

DaVita, Inc.

Dialysis Clinic, Inc.

Fresenius Kidney Care

Northwest Kidney Centers

Renalogic

At the event, AAKP and MEI expressed their appreciation to the sponsors of the KidneyWorks™ Initiative’s Consensus Conference including Baxter International Inc.; DaVita, Inc.; Dialysis Clinic, Inc.; Fresenius Kidney Care; National Renal Administrators Association; Northwest Kidney Centers; Renal Medicine Foundation; and the former ESRD New York Network.

###

Founded in 1969, AAKP is the largest and oldest independent kidney patient organization in America and is governed by a patient-majority Board of Directors.  AAKP conducts national education programs designed to better inform kidney patients, care-givers and policy-makers about the true impacts of kidney disease, prevention efforts and treatment methods.  AAKP executes a national advocacy strategy, in conjunction with allied kidney organizations, designed to insert the patient voice into proposed policies, research efforts and care deliberations before the Executive Branch and the U.S. Congress so that patient interests are fully represented.

 Founded in 1993, MEI is a national 501(c)(3) non-profit organization dedicated to helping people with chronic diseases learn to manage and improve their health, and a focus on chronic kidney disease.  MEI fulfills its mission by conducting research, developing evidence-based educational materials for consumers and health professionals, and advocating for patient-centered policies.  Tax-deductible contributions can be made through MEI's website, www.meiresearch.org.

ANNA SUPPORTS THE LIVING DONOR PROTECTION ACT

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.

CREATING FAIR AND EQUITABLE ORGAN DONATION

https://www.facebook.com/UnitedNetworkForOrganSharing/?fref=photo

WHY WE NEED TO BE MORE ACTIVE ON SOCIAL MEDIA

WHY WE NEED TO BE ACTIVE ON SOCIAL MEDIA

Posted on May 9, 2016 by nkf _advocacy

By Jim Myers, Kidney Advocacy Committee Liaison
WHY 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

You can also use social media to invite elected and government officials to join events such as:

• Meetings in Washington, DC
• Local (District) meetings and town halls
• Dialysis clinic visits
• Local NKF events, like Kidney Walks or KEEP Healthy screenings

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:

• Org- Petition supporting kidney donors’ rights
• I Petitions.com
• Social Bright – a directory of petition sites
• We the People – petition the Whitehouse

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 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 of Gary poses with U.S. Sen. Joe Donnelly in Washington D.C. on March 16 on behalf of the National Kidney Foundation while advocating for the Living Donor Protection Act. (Handout - James Myers)

Jerry DavichContact Reporter

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.

James Myers, 61, heads into surgery April 27 with a thumbs up, flanked by his "sweetheart" Tori Pines, his son, Jim Myers, and his son's wife, Monica, at Indiana University Health hospital in Indianapolis. (Handout - James Myers)

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.

James Myers, 61, of Gary, recovers from kidney transplant surgery April 27 at Indiana University Health hospital in Indianapolis. (Handout - James Myers)

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/.

Copyright © 2016, Post-Tribune

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