FDA’s Patient-Focused Drug Development Initiative Meeting

Great post, I’m in how about you?

Advocacy in Action

If you’ve received an organ transplant the Food and Drug Administration (FDA) wants to hear from you.  On September 27, 2016, FDA will hold its first to gain insight directly from patients about their experiences living with organ transplants and the medications they take to prevent organ rejection and manage related conditions.  This information will help FDA to consider issues important to patients when reviewing and considering approval of new therapies for transplant patients that may be developed in the future.  Input from these meetings will be incorporated into an official FDA report titled the Voice of the Patient.

If you are interested in participating live or via webcast here are the registration details: The public meeting will be held on September 27, 2016, from 9 a.m. to 5 p.m. Please register here for the meeting by September 20, 2016: http://organtransplantpfdd.eventbrite.com.

To keep up the momentum after the meeting, the National Kidney…

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One Family’s Story on Medicare Advantage

Advocacy in Action

In 2013 my son was diagnosed with ESRD at the age of only 23.  Once diagnosed, we had to make many decisions in a very short period of time.  They included preparing for dialysis, choosing a dialysis center and type of dialysis, training for home hemo dialysis, starting dialysis, surgeries, medication management, ordering of medical dialysis supplies, getting on the transplant waitlist, searching for and ultimately finding a non-related living kidney donor, signing up for social security income, understanding and signing up for Medicare and Medicaid, understanding how Commercial Group Health insurance, Medicare Advantage plan, and Medicaid all work together.  Then post-transplant, a whole new set of issues faced us, like continued medical follow up, medical testing, immunosuppressive medications, social issues, and my son finding a job.

When he was diagnosed my son had coverage under our Commercial Group Family Insurance plan in Pennsylvania.  We had a good primary care…

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JOE IS RAISING MONEY FOR A NEW KIDNEY

Joe and me at Five Guys Hamburger in Munster 7212016

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.

 

HANDLING YOUR IN DISTRICT MEETING

PETE VICLOSKY IN HIS MERRILLVILLE OFFICE

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?”

JimMyers1

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.

KidneyWorks Conference Concludes in D.C.

Paul T Conway and me

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.

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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.