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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Now is the Time to Review Your Medicare Drug Plan Options

medicare card

Medicare Open Enrollment season is here, and you have from now until December 7th to change your Medicare Part D (prescription drug plan) or Medicare Advantage plan (managed care plan) for 2016.  These plans change every year, so even if you stay in the same plan, the services, providers, and medications that are covered, and their cost, may change in 2016.

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It’s Not in the Stars: Dialysis Facility Compare (DFC) Update

Tonya Saffer, MPH, Senior Health Policy Director

On January 1, 2016 the Centers for Medicare & Medicaid Services (CMS) revamped the dialysis facility compare (DFC) website to assign star ratings to dialysis facilities based on their comparative performance on a set of CMS mandated quality measures. CMS held a teleconference earlier this week to roll out updates to the star ratings, which were posted today. The DFC website was intended to help patients and caregivers make decisions about where they can receive the best care. Last September, the National Kidney Foundation (NKF) expressed disappointment with the program because it did not evaluate facilities on the quality of care they delivered according to issues important to patients, such as attentiveness of the dialysis facility staff. It also graded facilities on a curve (think high school test scores comparing you to your peers rather than your own performance).

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Ask Your U.S. Representatives to Join the Primary Care Caucus

October 5-9 is Primary Care Week. To support the vital role primary care practitioners play in our overall health, Representatives David Rouzer (R-NC) and Joe Courtney (D-CT) launched the Congressional Primary Care Caucus in the U.S. House of Representatives. It’s imperative that the Caucus has a robust membership that recognizes the importance of primary care in detecting and managing treatment for the 26 million Americans who have chronic kidney disease (CKD).

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Gaining Support for the Kidney Cause

While Congress was in recess during the month of August, our Kidney Action Committee (KAC) liaisons took advantage of this opportunity to meet directly with their congressional delegations and staffs in their district offices to advocate for the issues important to them. More than 20 meetings were held throughout the country. On the agenda? Emphasizing the importance of federally funded health programs such as Medicare, which provides dialysis coverage for most Americans with kidney failure, and stressing the need for increased funding for kidney disease research through the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

Bill Murray (in orange) meets with Senator Carper's staff

Liaison Bill Murray (in orange), Marielle Van Thuyne (NKF) and Steve Tornone (Gift of Life) with Senator Carper’s staff (l) – Delaware 

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The Kidney Community is Back in Action on Capitol Hill

Kidney Advocates (L to R): Charles Cranford, AAKP; Jonathan Aponte; Nieltje Gedney, Home Dialyzors United; Kevin O'Brien, Alport Syndrome Foundation

Kidney Advocates (L to R): Charles Cranford, AAKP; Jonathan Aponte; Nieltje Gedney, Home Dialyzors United; Kevin O’Brien, Alport Syndrome Foundation

NKF and members of our Kidney Action Committee joined forces with the Kidney Community on Capitol Hill today to ask Congress to cosponsor the Living Donor Act of 2015 and to invest more funds in research for kidney disease.

The stats are startling. Over 26 million individuals have chronic kidney disease (CKD). Medicare spends more than $87 billion caring for individuals with CKD. Yet, federal funds for kidney research total just short of $600 million. It’s more important than ever that Congress act to ensure that funding for kidney disease research is increased. You can help support this effort now by emailing your members of Congress. Together, we can prevent and, one day, cure kidney disease!

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