From the American Transplant Association: Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act

Comprehensive Immunosuppressive Drug Coverage for     Kidney Transplant Patients Act

Why is this legislation necessary?

•Since 1972, Medicare has covered people with irreversible kidney failure, or end-stage renal disease (ESRD). There is no Medicare time limit for a patient dialysis patient. However, kidney transplant recipients lose their Medicare coverage 36 months

after a transplant.

•Extending immunosuppressive coverage beyond the 36 month limit would decrease the risk of allograft failure due to patients not taking their immunosuppression following loss of immunosuppressive coverage. When renal allografts fail, patients require dialysis and may be candidates for retransplantation, both of which would be covered by Medicare. In addition, transplant recipients have a higher quality of life, and are more likely to return to work than

dialysis patients.

•In 1972, it was estimated that the program would cost $250 million. In 2008, the Medicare ESRD program cost nearly $27 billion.

•This legislation will allow individuals who are eligible for immunosuppressive drugs whose insurance benefits under Part B have ended due to their 36 months running out to remain in

the program only for the purpose of receiving immunosuppressive drugs. If they have group health insurance with this benefit, they would not qualify for coverage beyond the 36 months. Cost benefits for the continuation of immunosuppressant coverage:

•Medicare spends $77,500 per year on a dialysis patient, which Medicare covers indefinitely;

•Medicare incurs an average first year cost of more than $100,000 for renal transplantation and will pay for both dialysis and                          re-transplantation in the case of organ failure;

•However, Medicare only spends an average of $19,100 on a kidney transplant recipient per year after the year of the transplant.

How is the premium determined for individuals eligible due to ESRD?

•A monthly premium rate will be determined based on the monthly actuarial rate for enrollees age 65 and over;

How does this affect those with private insurance?

•Coverage by private insurance varies widely; this legislation ensures Medicare is still the payer of last resort and will not usurp coverage offered by private insurers.

Does this open transplant recipients up to the full benefits of Medicare?

•No, this legislation would only eliminate the time limitation and extend coverage for transplant recipients for the purpose of immunosuppressive drugs only. Beneficiaries would pay the Part

B premium. All other Medicare coverage would end

36 months after the transplant.

PKD AWARENESS DAY 2016: MY STORY

How does one normally become aware of  Polycystic Kidney Disease?  In my case, I became aware through my Father. I’m 62 now.  This is about the same age my Dad was when he first told me he had PKD.  He had been to the Mayo Clinic for a checkup, and he reported to me that he had “kidney disease.”  He went on, “let me put it this way, the doctors said I won’t live to be a hundred.”  In the years that followed he became dizzy, had difficulty standing and maintaining his balance.  In a very short time, he was on dialysis.  By 1983, he was gone.  He spent the last month of his life in the hospital, St. Margaret’s in Hammond, Indiana.  He died a slow, lingering death of congestive heart failure and uremic poisoning all secondary to PKD.   I learned that as a child, his entire family had been quarantined as a result of small pox, and almost all of my family on my Father’s side had died as a result of what was originally termed as “environmental PKD,” or due to a scarring of the kidneys that later turned into cysts and infection.

One thing about this, I had a cousin Rich, who did not live with this group, and he too died from PKD related causes.  He was in his 30’s when he died, he had just married and this came as quite a shock to the rest of us.  They termed this, “Childhood PKD” and told the rest of us it was an aberration.

When my Dad told of us diagnosis, I was in law school, when he died I was already working my second attorney job.  Very shortly after his death, I went into the hospital in Valparaiso, Indiana, what was then called Porter Memorial, with chest pains.  My PCP told me that my cysts were so large they could be seen on a plain x-ray.  So much for the environmental/childhood theories.  To say this came as a blow, was an understatement.  I watch my Dad die and I felt my future was cast in cement. 

I did a lot of things wrong after that, but more importantly were the things I did that were right.  I not had the local nephrologists my Dad had in NW Indiana, but also retained nephrologists at IU Health at Indiana University.  I was put on a renal diet right way.  I was given high blood pressure medication.  I saw them every six months, where they did a urine test and a blood test on every visit.  I was able to put dialysis for a long time, over 30 years.  I was horribly frightened of dialysis because of what I saw when I sat with my Dad.  But because I had followed medical advice and had excellent care, my dialysis was not unreasonably difficult. 

Others were not so lucky.  I became a kidney advocate and this is what I plan to do the rest of my life.  I like helping others , especially my friends with PKD! 

On April 27, 2016, I became the first Myers ever to have a kidney transplant at my lucky place, IU Health in Indianapolis.

For PKD Awareness Day, I want to remind everyone to get tested.  It is a simple and inexpensive blood and urine test that takes no time at all, but can make a world of difference. If PKD runs in your family, like mine, don’t hesitate to get checked out.  Be PKD aware!

IMPROVE CARE COORDINATION FOR DIALYSIS PATIENTS: ELIMINATE RESTRICTION AGAINST ESRD BENEFICIARIES ENROLLING IN MA PLANS SUPPORT H.R. 5659, THE ESRD CHOICE ACT

FROM THE KIDNEY CARES PARTNERS:

More than 636,000 Americans are living with kidney failure, which is known as End Stage Renal Disease (ESRD). The only treatment available is a kidney transplant or renal dialysis. Many individuals with ESRD suffer from multiple co-morbidities. Ensuring care is properly managed and coordinated is critically important for those suffering with complex conditions. Under current law, individuals who become eligible for Medicare because they are diagnosed with ESRD are prohibited from enrolling in a Medicare Advantage (MA) plan. Since 2000, the Medicare Payment Advisory Commission (MedPAC) has recommended that Congress eliminate this restriction. Many patients would benefit from access to MA plans because many of these plans provide patients with coordinated care, access to additional benefits and services, and the most affordable coverage option. No other Medicare beneficiaries are prohibited because of their health status from having the choice to join MA plans. Patients with ESRD deserve the same choices as other Medicare beneficiaries. Congressmen, Jason Smith (MO), John Lewis (GA), Gus Bilirakis (FL), Kurt Schrader (OR), and Tom Marino (PA) have introduced common-sense, bipartisan legislation, H.R. 5659, the ESRD Choice Act, that would eliminate the restriction against ESRD beneficiaries enrolling in a MA plan. MA Plans Provide Care Coordination and the Best Coverage Option for Individuals with ESRD • The ESRD Disease Management Demonstration found that Medicare beneficiaries with ESRD in managed care have clinical outcomes that are as good as or better than they would have in Medicare fee-for-service (FFS). The vast majority of individuals with ESRD on dialysis are living with multiple chronic conditions, making care coordination clinically important. • Care delivery models are changing to promote coordinated care. Medicare should ensure that individuals with chronic illnesses, including ESRD, have access to such coordination. • Although the Center for Medicare and Medicaid Innovation has proposed to implement a Comprehensive ESRD Care Initiative, the ESRD Seamless Care Organization (ESCO) model will not be available to all Medicare beneficiaries with ESRD. • The additional MA benefits and services offered vary by plan, but may include case management services, disease management programs, nurse help hotlines, and tools to address disparities in care for minorities, who comprise a disproportionate proportion of ESRD patients. These are services that ESRD beneficiaries do not receive in Medicare FFS. MA Plans are the Most Affordable Coverage Option for Individuals with ESRD • CMS requires MA plans to limit the out-of-pocket costs to $6,700 annually and the average out-of-pocket cost limit in a MA plan is $5,223. FFS Medicare, on the other hand, does not have limits on out-of-pocket costs. • In 2010, ESRD beneficiaries spent an average of $6,918 annually on health care. • For dialysis patients without supplemental insurance coverage, out-of-pocket health care costs can exceed $9,000 per year. Less than half of states require insurers to offer at least one kind of Medigap policy to Medicare ESRD beneficiaries younger than age 65. In states where Medigap coverage is not available, MA coverage would help ensure affordable coverage for individuals with ESRD. • Approximately one-third of Medicare beneficiaries with ESRD have incomes that make them eligible for Medicaid. MA is an important source of coverage for low-income beneficiaries. Among Medicare beneficiaries enrolled in MA plans, 27 percent have an income less than $10,000, and 33 percent have an income between $10,000-$20,000. ESRD Patients Deserve Choice and Benefit from Care Coordination • Individuals who were enrolled in an MA plan before they were diagnosed with ESRD are allowed to remain in MA. In 2014, approximately 15 percent of Medicare beneficiaries with ESRD on dialysis were enrolled in MA plans. Data suggest that plan spending on beneficiaries with ESRD is within the expected range of spending for MA beneficiaries with chronic conditions. • Inpatient hospital care accounted for 35 percent of the per patient Medicare spending on ESRD beneficiaries in 2011. Studies have shown that beneficiaries enrolled in MA plans have 30-day hospital readmission rates that are 13 to 20 percent lower than Medicare fee-for-service (FFS) beneficiaries. We encourage all Members of Congress to cosponsor and support H.R. 5659 that lifts this outdated prohibition and provides increased choices of care for ESRD patients. ESRD patients are the only group of beneficiaries in Medicare prohibited from enjoying the benefits of Medicare Advantage. MA plans provide coordinated care, which is critically important for beneficiaries with kidney failure, who often must manage multiple complex chronic conditions. Care and outcomes for dialysis patients can be improved with access to care coordination through participation in MA.

LETTER FROM ANNA ON ESRD CHOICE ACT OF 2016

FROM THE ANNA

The ESRD Choice 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 Americans are diagnosed with kidney disease. More than 26 million individuals have kidney disease and more than 661,000 have kidney failure, known as end-stage renal disease (ESRD).

Three treatment options exist for those suffering from kidney disease and

ESRD: hemodialysis, peritoneal dialysis, or transplantation.

Given the limited availability of kidneys for transplantation, the majority of ESRD patients rely on dialysis care. Nearly all ESRD patients are Medicare beneficiaries. However, under current law, ESRD patients are prohibited from enrolling in Medicare Advantage (MA) plans, which offer more flexible and

integrated managed care coverage than traditional Medicare.

Moreover, MA plans include financial protections like out-of-pocket maximums, which are especially important to low-income beneficiaries

in need of ESRD care.

ESRD is the only pre-existing condition specified by the Centers for Medicare

and Medicaid Services(CMS) as a broad disqualifier for MA enrollment.

The Expanding Seniors Receiving Dialysis Choice Act of 2016 (H.R. 5659), introduced by Rep. Jason Smith (R-MO-8) on July 7, 2016, would remove the

prohibition on current ESRD patients from enrolling in MA insurance plans

for plan years beginning on or after January 1, 2020. The bill also would

streamline payments for kidney acquisition costs within Medicare.

Finally, the bill would require the Administrator of CMS to provide a report to Congress on the effects of the legislation by April 1, 2022.

There is broad group of national stakeholders that support this legislation, including patient groups, advocacy organizations, and health professional provider associations and societies. Additionally, the Medicare Payment Advisory Commission (MedPAC) supports allowing ESRD patients the choice to enroll in MA plans, having first recommended it in 2004 and again in

its March 2016 Report to Congress.

Recommendation: ANNA urges Members of Congress to cosponsor the

Expanding Seniors Receiving Dialysis Choice Act of 2016(H.R. 5659). The bill will increase access to high quality care by removing the prohibition on current ESRD patients from enrolling in MA insurance plans.

If you have questions about these issues, please contact ANNA’s Health Policy Consultant Jim Twaddell (202/230-5130, jim.twaddell@dbr.com).

Sources:

•Medicare.gov, “Who Can Join a Medicare Advantage Program?” July 2016.

https://www.medicare.gov/sign-up-change-plans/medicare-health-plans/medicare-advantage-plans/who-can-join-medicare-advantage-plan.html;

•National Kidney Foundation, “Fast Facts,” April 2016.

https://www.kidney.org/news/newsroom/factsheets/FastFacts

•MedPAC, “The Medicare Advantage program: Status Report,” March 2016. Pg. 363.

http://www.medpac.gov/documents/reports/chapter-12-the-medicare-advantage-program-status-report-(march-2016-report).pdf

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.