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