Advocating to Advance Patient Centered Outcomes Research

By Tonya Saffer, Senior Health Policy Director at the National Kidney Foundation

Last week, I had the honor of walking the halls of Congress to advocate for continued patient-centered outcomes research. My companion for the day was Kimerly Coshow from the mountains in Blue Ridge, Georgia who is living with Parkinson’s. We were part of an effort to draw Congress’s attention on the need to reauthorize funding for the Patient Centered Outcomes Research Institute (PCORI).  Kim had flown to Washington, DC to advocate and attend PCORI’s 4th annual conference.  On Capitol Hill, she and I met with her two Senators Johnny Isakson and David Perdue, and her Representative Doug Collins.

PCORI is a nonprofit organization authorized by Congress in 2010. PCORI receives its funding through the patient-centered outcomes research trust fund (PCOR Trust Fund). The trust fund receives income from three funding streams: appropriations from the general fund of the Treasury, transfers from the Centers for Medicare & Medicaid Services (CMS) trust funds, and a fee assessed on private insurance and self-insured health plans (The PCOR Fee). Without re-authorization and continued income to the PCOR Trust Fund by September 30, 2019, PCORI will not be able to continue funding new patient-centered outcomes research.  Patient advocates wanted to get an early start in educating Congress about the critical importance of PCORI and the benefits it offers to all patients whether they have kidney disease, Parkinson’s, or struggle with other health conditions. This is the message that Kim and I teamed up to share.

PCORI research is different from what other government agencies, like the National Institutes of Health conduct. Traditional research, which produces many advances in health and science, does not always address the questions that matter most to patients. Like, what care works best for me given my current situation? Which treatment option will help me meet my personal goals and continue doing the things that matter most to me?  Many PCORI research projects seek to answer these questions as well as to help empower patients to make informed decisions about their treatment options. What’s also unique about PCORI is their engagement of patients in research. PCORI funded projects must have patients involved in the project from concept and proposal development all the way through to sharing the results of the study.  PCORI even has patients help select which proposals will get funded. PCORI has created a culture of patient engagement in research and that culture is extending to health care delivery as well.  PCORI research findings are shared publicly and stated clearly and simply so that non-researchers understand what they mean and how they can be used by patients to make better decisions about their treatment options.

Since its inception PCORI has provided $1.9 billion in funding for more than 600 research-related projects that focus not only on traditional clinical outcomes, but also on the needs, preferences and outcomes that matter most to patients.  PCORI funded research in kidney disease is helping patients make more informed decisions about their treatment options like the choice between peritoneal dialysis and hemodialysis, studying strategies to identify patients progressing to kidney failure earlier to improve their care transitions, and evaluating options to improve cardiovascular safety in hemodialysis patients. Recently, PCORI funded a National Kidney Foundation Patient Centered Outcomes Research Conference that identified the barriers to patient engagement in kidney disease research and resulted in patient driven research questions. The National Kidney Foundation will in turn fund a project to help answer one of these questions.

The research PCORI funds produces results that can help all patients be empowered and informed decision makers about their healthcare.  We hope that the Members of Congress who met with patient advocates last week have a better understanding of PCORI’s contributions and it’s need for continued funding.

Have you or are you currently participating in a PCORI funded project?  Share your experience in the comments below!

 

 

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Affordable Care Act’s 5th Open Enrollment Period Begins

Need health insurance?  Or want to change your plan?  Open enrollment for health insurance plans through the Affordable Care Act (ACA) is here!  To make sure you have health insurance in 2018, sign up on healthcare.gov by December 15, 2017.

Health Insurance

This year the open enrollment period is shorter than usual, so don’t wait!  Get started now so you can shop around and do your research on what each plan offers.  Plans can change from year to year, so make sure you know what your plan covers, even if you are keeping the same plan that you had in 2017.  Things that might change in your plan include:  cost (premiums, deductibles, copays, coinsurance), which practitioners are in-network, additional coverage benefits (mental health, outpatient lab results, long term care, etc.).  Confused already?  Learn more about these terms here.

The National Kidney Foundation knows that shopping for health insurance can be challenging, particularly when you have a chronic health condition. That’s why we developed the Kidney Health Insurance Worksheet to help you get organized and know what to look for when shopping for coverage. We also created a decision aide for individuals with kidney failure who are exploring all of their insurance options, including eligibility for Medicare.

To apply visit healthcare.gov to apply online OR you can also seek free personalized assistance in person or over the phone to guide you through the process of picking a health insurance plan, applying for coverage, and checking to see if you qualify for financial assistance.  To get assistance find phone numbers for your state on healthcare.gov or on your state’s health insurance marketplace website.

Have you enrolled in an ACA Marketplace Plan? Share your experience with us by leaving a comment or emailing nkfadvocacy@kidney.org.

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National Kidney Foundation Statement on President Trump’s Executive Order to Amend Affordable Care Act

On October 12, 2017, President Trump used the power of the Executive Order to undermine parts of the Affordable Care Act (ACA) and open the door to a health insurance marketplace that will leave individuals with pre-existing and chronic health care conditions, such as chronic kidney disease (CKD), unprotected. President Trump took two actions that will cause many individuals with pre-existing conditions to be unable to afford health insurance.

The first Executive Order, signed yesterday, allows for a health insurance market to create a two-tiered insurance market; one for sick individuals and one for younger healthy individuals. The second eliminates subsidies to insurance companies who are required to lower premiums and cost-sharing for low income individuals – making it more plausible that more insurers will leave the marketplace. Both moves make it likely that individuals with chronic conditions, including chronic kidney disease, will be unable to afford health insurance in the marketplace. If patients with CKD are left with little access to healthcare they will have difficulty getting care necessary to slow or prevent the progression of their disease. This will result in higher costs to Medicaid, Medicare and insurers.

Kidney transplant recipients who are under 65, and whose Medicare coverage will end 36 months post-transplant, also will have fewer options to obtain health insurance, limiting their ability to afford the anti-rejection medications they need to keep their kidney transplant.

The National Kidney Foundation calls on President Trump to keep his promise to protect people with pre-existing conditions and rescind these Executive orders.

Kidney Disease Facts

30 million American adults are estimated to have chronic kidney disease—and most aren’t aware of it. 1 in 3 American adults are at risk for chronic kidney disease. Risk factors for kidney disease include diabetes, high blood pressure, heart disease, obesity and family history of kidney failure. People of African American, Hispanic, Native American, Asian or Pacific Islander descent are at increased risk for developing the disease. African Americans are 3 times more likely than Whites, and Hispanics are nearly 1.5 times more likely than non-Hispanics to develop end stage renal disease (kidney failure).

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NKF’s Landmark Early Detection Legislation Introduced in the U.S. House of Representatives!

By Kevin Longino, CEO of the National Kidney Foundation and kidney transplant recipient

After an intense 16 months of NKF laying the groundwork, I am pleased to announce another milestone in our CKDintercept initiative.  Landmark legislation, designed to help detect and treat CKD early, was introduced into the U.S. House of Representatives on September 28th.

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NKF Kidney Advocacy Committee members

Representatives Markwayne Mullin (R-OK), George Holding (R-NC), Linda Sanchez (D-CA), and G.K. Butterfield (D-NC) introduced H.R. 3867, which seeks to demonstrate early detection of CKD, combined with effective and coordinated care that engages patients in the decision-making process, can improve clinical results and lower healthcare spending.

The voluntary practitioner-led Medicare pilot program will tie Medicare payment to improvements in the early detection of CKD and the care patients receive. This bill will promote stronger collaboration between primary care and nephrology practitioners to preserve kidney health and provide them with the resources they need to make measurable improvements in the care of people with CKD. NKF initiated this landmark legislation and believes it can help change the pattern of how CKD is identified and treated, improving the outcomes and quality of life of patients with CKD.

For too long patients have asked why they were not diagnosed with chronic kidney disease (CKD) before learning they had kidney failure (ESRD). CKD affects 30 million people in the U.S. and, astonishingly, 96% of those with early kidney disease don’t know they have it.  

I ask you to join me in supporting this legislation by emailing and tweeting our Representatives and asking them to become co-sponsors of the bill.  You can help this program change lives for the better.  Support H.R. 3867  – 30 million Americans affected by kidney disease are counting on you!

Write Congress Now

Tweet Congress Now

 

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Representing Kidney Disease on Capitol Hill

By Troy Zimmerman, Vice President of Government Relations

On Tuesday, September 19th, I represented the National Kidney Foundation as one of 22 organizations which participated in a Capitol Hill Kidney Community Advocacy Day hosted by the American Society of Nephrology (ASN).  I was paired with representatives from the American Society of Pediatric Nephrology and American Nephrology Nurses Association as we helped present the unified voice of the kidney community.  We discussed two policy requests in our meetings:  support for a $2 billion increase in funding for the National Institutes of Health (NIH) for Fiscal Year 2018 and cosponsor the Living Donor Protection Act.

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An increase for NIH next year is very likely, with the House and Senate Appropriations Committees already recommending increased funding (including $2 billion by the Senate) in their respective bills for the Department of Health and Human Services (HHS).  30 million Americans are affected by CKD and 96% don’t know they have it.  Funding for NIH will support programs to develop new interventions and treatments for kidney disease including delaying or preventing end stage kidney failure (ESRD).  We expect Congress to vote on this bill later this year.

The Living Donor Protection Act H.R. 1270, introduced in the House in February, currently has 43 co-sponsors.  We asked Representatives who have not yet cosponsored H.R. 1270 to do so and thanked the 43 who have.   However, because the Senate’s version has not yet been introduced, a primary focus of our meetings was to identify a Republican willing to carry this legislation in the Senate.  We continue to be appreciative of Senator Gillibrand (D-NY) for her willingness to sponsor this legislation as the lead Democrat.

In the meantime, please help keep the momentum from this Advocacy Day moving by reach out to your elected officials for their support on these two priorities.  If you have a Republican Senator, we especially need your help to enlist them as an original sponsor for the Living Donor Protection Act by sending them the letter linked below:

To Support the Living Donor Protection Act:

Write Congress Now

Tweet Congress Now

To Support Kidney Disease Appropriations:

Write Congress Now

Tweet Congress Now

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Meeting with the New U. S. Surgeon General – Dr. Jerome Adams

By Curtis Warfield, Kidney Patient and KAC Liaison

I’ve had a very interesting journey since being diagnosed in 2012 with chronic kidney disease (CKD). With the emotional, mental and physical highs and lows of tests, hospitals, medications, dialysis and the blessings of a kidney transplant from a living donor in January 2016, it’s been quite a ride. And this journey has inspired me to “give forward” my time in promoting kidney and donor awareness.

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Dr. Jerome Adams, U.S. Surgeon General and Curtis Warfield

I work for Indiana State Department of Health (ISDH) and through happenstance last summer (2016), I met the State Health Commissioner Dr. Jerome Adams. We shared stories about his many physician and administrative roles, and I told him my kidney story and about my recent transplant surgery – which was six months post at the time. Somehow, with no intent, I left an impression. He featured my kidney story in his March 2017 ISDH Commissioner’s newsletter and he has taken time to speak to me again on several occasions.

Dr. Adams was confirmed on August 3rd, 2017 as the U.S. Surgeon General. Before he left Indiana for his new position, I wanted to meet with Dr. Adams to discuss NKF policy priorities, such as protecting living donors and promoting early detection, and get his insight on meeting with legislators to discuss CKD policy. I was surprised to get a call the day after I requested a meeting. The meeting was brief but it was powerful.

We spoke about my advocate activities with NKF and Indiana Donor Network, and he offered a few tips to maximize my impact when speaking with state and national legislators.

  • When telling your story, include another story that has been highlighted in your area. Make the connection about how your stories affect the community.
  • National statistics are good but highlight your state stats. Representatives and Senators will be more interested in how CKD directly affects their constituents.
    • Highlight personal points of interest from your area that can make an impact. An example could be – the hospital, or transplant center, in that Member’s local district that performs transplants, particularly if it is nationally ranked. And talk about the hours you must drive to get to a hospital or the total number of hours you spend yearly at a dialysis center
  • Check to see what committees and groups your legislators sit on and see if there is support from any other legislators for your issue.
  • Make personal contact with the legislator’s healthcare staff in their D.C. office and make sure they get copies of any information you give to your legislator.
  • Contact the legislative liaisons at your local hospital or health agency. It’s helpful to have other outside agency support for your efforts, especially from those who have contacts in a legislator’s office.

Dr. Adams stated the more resources you go into your meeting with, the more people will listen and keep your information on top of the pile. That keeps it moving in a positive direction.

When our meeting ended, Dr. Adams offered an invitation to visit him when in D.C., which I plan to use.  I wish him the best, as I know he’ll do well as Surgeon General. He’s well versed on the medical and human issues facing our nation, and is committed to public health and public health awareness.  I look forward to having an advocate for kidney disease patients serving as Surgeon General.

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“Winter” may be coming, but August is here!

by Andrew Fullerton, Government Relations Manager

What is so special about August that you should take time away from binge watching “Game of Thrones?” 

During August, your Senators and Representatives will be coming home from Washington, D.C. for the month to meet with constituents and attend events in the state or district.  This means you have a chance to meet with them, tell them about your kidney story, and how they can support chronic kidney disease (CKD) patients.

Uncle sam advocacy blog

Why is this important?

We want you to meet with your legislators – or their staff – at their office and various events around your hometown.  Sign-up for their mailing list and attend their next town hall meeting with other advocates.  Visit them at the state fair or other widely attended events.  Do you also see your state legislators at the event? Say hello to them and educate them as well.  Learn more about these activities.

What else can I do to support CKD policy priorities?

There are a couple fun activities to build support for CKD patients from home and spread the word at the same time!  Consider making your presence known through social media!  Tweet your legislators or post on their Facebook site.  Take a video of yourself on your phone telling how important this is to you.  Take a picture of yourself holding a sign with a note about your CKD experience.  Also, share it with all of your connections using the hashtag #mykidneysmylife.  Interested?  Read this guide on how to engage lawmakers on social media.

Need more guidance?

Do you want to take action but need more guidance?  Contact Andrew Fullerton (andrew.fullerton@kidney.org) for assistance.  We are here to help you in your fight to advance CKD policy priorities.  Read our guides and policy fact sheets to help you make your case to your legislators.

Thank you for taking the time this August to reach out to your legislators and remember to also sign up to become an NKF advocate.

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Food and Drug Administration Advocacy

By Troy Zimmerman, National Kidney Foundation’s Vice President of Government Relations

The news reported out of our nation’s Capital is increasingly focused on what isn’t being accomplished instead of what’s been done. While the news is overwhelmingly negative, successes do continue to occur that will help kidney disease patients.  One such success is the recent approval by the House and Senate Appropriations Committees to fund the Food and Drug Administration (FDA) for 2018.  Both Committees have recommended $2.76 billion for FDA, representing the same level as that provided in 2017.  In a year in which many programs are being reduced by 10 percent or more, this success is a very welcome development.

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Every day, Americans use consumer products with confidence that they are safe and effective.  What they probably do not realize is the important role FDA plays.  This agency oversees products that represent 20% of consumer spending, including not only food and drugs, but also medical devices, dietary supplements, personal care products such as cosmetics, animal feed and drugs, and even cell phones and fluorescent lamps!  No other public or private entity can fill this role, yet FDA’s mission is increasingly complicated with global trade resulting in more imported food (including fruits and vegetables) and more imported drugs.

NKF is a member of the Alliance for a Stronger FDA (“the Alliance”), which brings together non-profit organizations, companies, professional trade associations and others to advocate for FDA funding. The Alliance has helped build strong bipartisan support in Congress to enable FDA to fulfill its responsibilities. Each year, the Alliance hosts a Capitol Hill Day to meet with congressional offices whose Members serve on committees with jurisdiction over FDA.  I am amazed at the unequivocal support NKF receives in our meetings and this year was no different.  Working together, the Alliance members help ensure an FDA strong enough to keep kidney patients safe.

This morning I took a daily prescription medication, fed a pet and had a cup of coffee.  Three examples of FDA’s responsibilities in only the first hour of my day! The next time you use an everyday product, it very well may be impacted by FDA, whose mission can be met only at the federal level.

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Healthcare Reform Fails in the Senate

By Troy Zimmerman, National Kidney Foundation’s Vice President of Government Relations

As we have reported, the Senate has conducted a series of votes on the American Care Act (ACA) reform during the closing days of July but failed to gain majority support. The final vote occurred on the Health Care Freedom Act (referred to as the “skinny repeal”) that would have set up discussions with a joint House / Senate conference committee. The Health Care Freedom Act proposed several key changes to the ACA including repeal of the individual mandate to obtain insurance and the employer mandate. It also would have allowed states to roll back certain insurance regulations.

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Throughout the House and Senate debate, NKF has expressed the importance of providing access to affordable care with appropriate benefits and coverage for individuals with kidney disease.

While we cannot say what lies ahead, for the time being it is likely Congress will set aside efforts to make significant changes to the law. However, much still remains to be done to improve the ACA and we are hopeful that Congress will work in a bipartisan manner to propose changes that will help all those affected by chronic conditions better access the care they need and deserve.

We are optimistic Congress will soon consider other health care legislation, including priorities of NKF such as the Living Donor Protection Act (HR 1270) and our proposed early CKD detection and management bill. Our staff will continue its efforts with our supporters in Congress and keep you apprised regarding opportunities to reach out to your congressional delegation.

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Victory for kidney disease patients in Pennsylvania!

by Andrew Fullerton, Government Relations Manager

Thanks to the efforts of the entire renal community in Pennsylvania, the state legislature made a significant improvement by restoring nearly all of the funding Governor Wolf proposed to cut from the Chronic Renal Disease Program (CRDP).   Instead of the more than 80% reduction, or $6.6 million, cut proposed by the Governor, the state legislature would cut CRDP by 12%, or $1 million.

Pennsylvania State Capitol Building in Harrisburg, Pennsylvania

Because of the outreach by our advocates, more than 1,750 letters, tweets, and calls were received.  The renal community showed the impact that the proposed cuts would have to Pennsylvanians with kidney failure and made an amazing difference for these patients.

CRDP is a vital program that provides reimbursement for transportation to dialysis and prescription drug coverage – including post-transplant immunosuppressant drug coverage – and medical coverage as a payor of last resort.

This proves the importance of advocating on behalf of kidney disease patients – to learn more about how you can be an advocate for those with kidney disease, please click here.  Thank you again supporting those who made this victory possible!

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