NKF to Senate Finance Committee: Do More for Kidney Disease Patients

The National Kidney Foundation (NKF) does not believe the Senate Finance Committee’s Bipartisan Chronic Care Working Group (CCWG) recommendations go far enough to address the growing numbers and needs of Americans with chronic kidney disease.

On January 29th, NKF released comments on the CCWG’s policy options document. The working group, chaired by Senator Isakson (GA) and Senator Warner (VA), made numerous proposals to improve the care of Medicare beneficiaries with chronic conditions and to lower healthcare costs.

While NKF is pleased with proposals to improve the care of individuals with end-stage renal disease (ESRD) who are on dialysis, NKF also urged the CCWG to target Medicare payment reforms that will encourage better care for individuals with chronic kidney disease (CKD). Only by diagnosing and managing CKD early can we save lives, improve outcomes for kidney patients and reduce healthcare spending.

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Fighting Discrimination against Kidney Failure Patients

We’re seeing an alarming new trend of End Stage Renal Disease (ESRD) patients facing discriminatory policies by insurers. In several states, the kidney patient community has identified insurance plans discriminating against ESRD patients through several methods. The policies mislead consumers into believing that Medicare is an added benefit of their insurance, without disclosing downsides, to convince consumers to sign up for Medicare. Policies also penalize consumers who do not enroll by using non-negotiated set payments rates for dialysis providers and subjecting patients to the remainder of the charges billed by the dialysis provider. These costs are not applied to the patient’s out-of-pocket maximum.

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NKF in 2016: Legislative Priorities

Though the National Kidney Foundation (NKF) is pleased with our advances this past year to ensure kidney patient perspectives were considered and included in policy decisions, we are hard at work on our 2016 priorities. Below are our objectives for the remainder of the 114th Congress and the 2016 legislative year.

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NKF’s 2015 Year In Review: Advocacy Achievements

static_advocacy The National Kidney Foundation (NKF) made many strides this year to ensure kidney patients perspectives were considered and included in policy decisions. We also began an important new initiative to change the way Medicare pays primary care practitioners and nephrologists for detecting and managing chronic kidney disease (CKD) to ensure that future patients never have to ask the question “Why did my doctor not tell me I had kidney disease before my kidneys failed?” Below are some brief highlights from 2015:

1. Hosted our 2nd annual Kidney Patient Summit. The Summit brought

Senator pin

Senator Grassley putting on the NKF pin!

together six patient advocacy organizations and 100 kidney patients, family members, and living organ donors to visit 150 Congressional offices during National Kidney Month in March to advocate for improvements in kidney care. Dr. Griffin Rodgers, Director of the National Institutes for Diabetes and Digestive and Kidney Diseases (NIDDK), served as keynote for the event. Senator Chuck Grassley showed his support to fight kidney disease by wearing our kidney logo pin!

2. Launched a Kidney Patient Advocacy and Engagement Leadership Committee called the Kidney Action Committee (KAC). These 75 individuals from 43 states are all connected to kidney disease. The group consists of early stage kidney disease patients, dialysis patients (in-center, home hemodialysis, and peritoneal dialysis), kidney transplant recipients, living kidney donors, and family/caregivers of kidney patients. KAC members are leading NKF’s efforts to ensure all kidney patients’ voices and perspectives are included in the development and implementation of public policy, patient education and kidney disease research.

3. United with other patient and professional stakeholders to secure increases in NIDDK funding. Under an agreement reached by House and Senate leaders, the NIDDK will receive $1.97 billion in Fiscal Year 2016, $68.7 million above Fiscal Year 15 and $30.2 million above the President’s request.  Funding for the National Institutes of Health (NIH) will be $32 billion, representing a $2 billion increase. Kidney Action Committee Patient Liaisons garnered the attention of their Members of Congress to support the increased funding requests by publishing 13 Letters to the Editor in the states of AR, AZ, CO, CT, DE, GA, LA, ND, NE, VA.

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Generic Medications and Your Kidney Transplant

By Matthew Cooper, MD, Director of Kidney and Pancreas Transplantation at Medstar Georgetown Transplant Institute.

If you have received a transplant, you’ve probably had this discussion with your transplant team, “How will you pay for your immunosuppressive medications?”

It’s an even more important question now as a new study, funded by the National Kidney Foundation, found that many insurance plans in the healthcare exchange marketplace are pushing the cost of immunosuppressive medications to patients. This means many patients may pay the out-of-pocket maximum for their medications, up to $6,200 in 2015, and $6,850 in 2016.

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A Big Thank You

By Kevin Longino, CEO of the National Kidney Foundation

As Thanksgiving approaches, I, along with the National Kidney Foundation (NKF) staff, would like to take this time to say thank you to our amazing volunteers and donors. As the nation’s largest and longest serving voluntary health organization committed to fighting kidney disease, we would not be able to fulfill our mission without the leadership and ongoing support of others.

At the heart of all we do are the millions of patients who live with kidney disease every day. I thank those who take action to advocate on issues of importance to the entire kidney community. There is no more devoted group of patients leading the charge to raise awareness of kidney disease and improve kidney care than our Kidney Action Committee (KAC) patient liaisons. These patients, who are dealing with their own struggles with kidney disease, take the time to ensure others do not have to go through the same struggles. From those with early stage kidney disease to dialysis patients, donors and transplant recipients, KAC members use their experience to advise government agencies, research organizations, and policy and health groups on kidney disease.

We also have an invaluable group of professional volunteers who advise the organization on many essential healthcare strategies, including the development of evidence based clinical guidelines that set the bar for delivering high quality kidney care. In addition, they are strong advocates, working to improve access to that high quality care for patients.

I am humbled by the commitment of our dedicated volunteers and I am grateful for their many contributions this past year to fight kidney disease and improve patient care. I am also thankful for our financial donors, those who give individually and our corporate supporters. Without their generosity we would not be able to serve the 26 millions of Americans who have kidney disease. Thank you to all.

Happy and healthy Thanksgiving!


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Innovation, Access and Affordability of Prescription Drugs

By Troy Zimmerman, Vice President, Government Relations, NKF

Pills in bottlesPrescription costs are increasingly a concern for patients and insurers, particularly as copayments increase. Additionally, while providing better outcomes for patients, in many instances new innovative therapies incur considerable additional cost for patients and payers. If innovation is unaffordable, it can’t be effective.

Last week, I attended a forum hosted by the U.S. Department of Health and Human Services (HHS) to discuss this issue on behalf of the National Kidney Foundation (NKF). Four panels of presenters addressed innovation, access and affordability of prescription drugs and the impact on patients, businesses, insurers and governments.

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Big Win for Kidney Patients in Oregon! Successful Battle Against Health Insurance Discrimination

Two patient advocates in Oregon, Troyce Crucchiola, a transplant recipient, and Patty Danielson, a dialysis patient, stood up for all end-stage renal disease (ESRD) patients in the state of Oregon to declare that insurance companies should not be allowed to force ESRD patients into Medicare prematurely.  They asserted that patients should have the right to make insurance decisions that best meets their needs, and shared their personal experiences with insurance coverage, healthcare, and ESRD.

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Seeking Hemodialysis Patients for Focus Groups in Metro Areas

The National Kidney Foundation (NKF) is doing a study of dialysis patients’ understanding and perceptions of different kinds of drugs. We’ll be conducting focus groups—informal group conversations with a professional moderator—to discuss the kinds of information patients want to know if their doctor prescribes a new medication.

Focus groups will be conducted in New York City, Los Angeles, Dallas and Chicago. Each focus group will include 8-10 people who are on hemodialysis. Each group will last about two hours. No one will try to sell you anything as a result of your participation in this study. We are only interested in your opinions.

If you live in one of these metropolitan areas and are interested in helping NKF to better understand how to communicate and provide information to dialysis patients about treatment options, please let us know by providing your contact information and telling us a little about yourself.

Study participants will receive $100 plus up to $50 more if you need transportation or other assistance. If you are selected to participate in the study, we will contact you with further details.

We thank you in advance for your help.

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Open Enrollment for 2016 Health Coverage Has Officially Begun

Sunday November 1, marked the first day of open enrollment in the Affordable Care Act (ACA) health insurance marketplace plans.

Whether you enrolled in an ACA health insurance marketplace plan last year, you’re looking for coverage for the first time, or you’ll be looking for health insurance in the near future, it’s very important that you shop around. There are new plans now available in the ACA marketplace that were not available before, and a plan that you enrolled in last year may have made changes to the services and medications covered and how they are covered. Similarly, plans may have changed which healthcare practitioners are in their network.  All of these changes may affect how much you pay for your care and if you will be able to continue seeing your current practitioners.  You have until January 31st, 2016 to enroll in coverage for next year, but only until December 15th if you want that coverage to begin on January 1st, 2016.

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