“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.

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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.

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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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House Committee Approves Funding for NKF Priorities

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

Advocacy works! On July 19th, the House Appropriations Committee approved its Fiscal Year 2018 funding bill for the Departments of Labor, Health and Human Services, Education and Related Agencies (and rejected many of President Trump’s proposed cuts).  At our March Kidney Summit, NKF patient advocates met with their House Member to request support for kidney disease research and early detection of CKD.   Programs of interest to kidney patients in the funding bill include:

The Centers for Disease Control (CDC) Chronic Disease Prevention and Health Promotion activities would receive $703.7 million in discretionary funding, including $2.1 million for the Chronic Kidney Disease program designed to increase awareness and management of CKD (90% of those with kidney disease are unaware they have it). Chronic disease funding is $74 million less than the FY 2017 amount but the kidney program is maintained at the 2017 level.

A $1.1 billion increase to $35.2 billion for the National Institutes of Health, including $1.9 billion for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), an increase of $29.1 million.  NIDDK provides funding for research to explore potential breakthroughs to provide new therapies to treat kidney diseases and slow or prevent progression. Total funding for NIDDK is $2.05 billion when mandatory Type 1 diabetes funding is included.

Within the Health Resources and Services Administration, organ transplantation would receive $23.5 million, identical to this year’s appropriation.  This program supports initiatives to increase organ donation, including living donation.

The full House will vote on the bill later this year and the Senate Appropriations Committee will develop its version also. We will keep you apprised of the timing for future action so that you can reach out to your congressional delegation at that time.

 

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Legislative update on the Senate Better Care Reconciliation Act

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

On July 17th, Senate Majority Leader McConnell (R-KY) announced that a Senate floor vote on the Republicans’ draft health care reform legislation will not be scheduled, given some Republican opposition to the bill.  He further announced that he is considering a vote to repeal the Affordable Care Act while deferring “replacement” to a later date.  However on July 19th, following a meeting with President Trump he announced he will try to schedule a vote on either the “repeal and replace bill” or a repeal-only bill.

The National Kidney Foundation urges Congress and President Trump to work in a bipartisan manner to discuss critical challenges patients face, including access to affordable care with appropriate benefits and coverage for individuals with kidney disease.

Improvements in access to, and affordability of, healthcare are needed to address the many challenges kidney patients face today.  We urge Congress and the Administration to address the following challenges in their plans to improve access to affordable healthcare:

  • Access to healthcare is critical to earlier detection and management of chronic kidney disease (CKD). Earlier detection and management can often delay or prevent progression of chronic kidney disease and the need for dialysis treatment, improve outcomes for patients and lower healthcare expenditures.  NKF urges Congress to enact policies that maintain or increase the number of insured patients, which will enable earlier detection of CKD.
  • People with end stage renal disease (ESRD) require either a kidney transplant or dialysis to survive.  As such, insurers should be required to cover these treatments and be prohibited from limiting coverage to people with ESRD who choose not to enroll in Medicare. Kidney patients should have choices for their insurance coverage.
  • Over 200,000 ESRD patients have received a life-saving kidney transplant and must take immunosuppressive drugs for the life of the transplant.
    • The insurance practice of placing immunosuppressive medications, including generics, on high cost sharing tiers requiring coinsurance amounts of greater than 20% and up to 50%, while also excluding generic immunosuppressive medications from fixed copayment amounts, severely jeopardizes the long-term success of the transplant.
    • Cutting back on, or skipping doses of, immunosuppressive medications can be detrimental to the transplant and the patient.
    • Each year Medicare spends $87,000 per dialysis patient; opposed to $32,500 for a transplant patient.  Transplantation is far more cost effective and is associated with better outcomes than a lifetime of dialysis.

 

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Legislative update: The Senate Better Care Reconciliation Act

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

On July 13, Senate Republican leaders unveiled a revised version of their healthcare reform bill.  Previously, the National Kidney Foundation stated its opposition to the Senate Better Care Reconciliation Act, as it would reduce access to preventive and life-saving care for people at risk of, or with, chronic kidney disease.   We remain opposed to this bill despite the latest changes.

Most significantly, the new bill allows insurance companies to offer plans that are non-compliant with the Affordable Care Act as long as those companies continue to also offer plans that are ACA-compliant in the same geographic area.  Many observers, including the National Kidney Foundation, believe this would result in younger, healthier people enrolling in non-ACA compliant plans, making the ACA-compliant plans, which offer more benefits, unaffordable.

Furthermore, the revised proposal includes reductions to Medicaid similar to those in the first reform bill, which could leave many low-income people without access to health insurance and health care services, including preventive care necessary for slowing the progression of chronic kidney disease. As state Medicaid budgets are tightened, states might reduce the populations they cover and eliminate expensive benefits such as dialysis treatments.

We are opposed to the bill for reasons stated above and the potential impact on individuals with kidney disease.  If you would like to write your Senators and express opposition to the bill you can do so by clicking here.

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Senate Introduces the Better Care Reconciliation Act

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

On June 22, the U.S. Senate introduced the Better Care Reconciliation Act, their counterpart to the House of Representative’s American Healthcare Act.  Both bills would significantly reduce access to vital, preventive, and life-saving care for people at risk of, or with, chronic kidney disease.

Despite assurances that people with pre-existing conditions could still purchase insurance in the Marketplaces, this bill allows states to eliminate the essential health benefits currently provided under the Affordable Care Act, and permits insurers to discriminate against people with pre-existing conditions by not covering vital medications and treatments. For kidney patients, this could include treatments such dialysis or transplantation and medications.

In addition, significant changes and cuts to Medicaid could leave many low-income people without access to health insurance and health care services.  This includes preventive care necessary for slowing the progression of chronic kidney disease.  As state Medicaid budgets are tightened across the nation, states may look to reduce the populations they cover and eliminate expensive, but critical, benefits like dialysis treatments.

Instead, NKF believes the Senate should consider these alternative concepts to improve healthcare for chronic kidney disease patients:

  • Access to healthcare is critical to earlier detection and management of chronic kidney disease (CKD). Earlier detection and management can often delay or prevent progression of chronic kidney disease and the need for dialysis treatment, improve outcomes for patients and lower healthcare expenditures.  NKF urges Congress to enact policies that maintain or increase the number of insured patients, which will enable earlier detection of CKD.
  • People with end stage renal disease (ESRD) require either a kidney transplant or dialysis to survive.  As such, insurers should be required to cover these treatments and be prohibited from limiting coverage to people with ESRD who choose not to enroll in Medicare.
  • Over 200,000 ESRD patients have received a life-saving kidney transplant and must take immunosuppressive drugs for the life of the transplant.
    • The insurance practice of placing immunosuppressive medications, including generics, on high cost sharing tiers requiring coinsurance amounts of greater than 20% and up to 50%, while also excluding generic immunosuppressive medications from fixed copayment amounts, severely jeopardizes the long-term success of the transplant.
    • Cutting back on, or skipping doses of, immunosuppressive medications can be detrimental to the transplant and the patient.
    • Each year Medicare spends $87,000 per dialysis patient; opposed to $32,500 for a transplant patient.  Transplantation is far more cost effective and is associated with better outcomes than a lifetime of dialysis.

If you are interested in supporting NKF and kidney patients around the country, please consider reaching out to your Senators by clicking on the button below.

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At Home This August? Consider Meeting Your Legislators!

By Andrew Fullerton, Government Relations Manager

Will you be around this August and want to help make a difference for patients?    Consider taking a few hours to meet with your lawmakers (or their staff) to tell them about the importance of kidney disease legislation and programs!

From July 29th to September 4th, Congress will be on what is commonly called “August Recess.”  Your Senators and Representatives will be in their home state meeting with constituents.  There are a number of ways that you can meet with them:

  1. Meet with them in their district offices.
  2. Speak with them at town halls.
  3. Speak them at local events they are attending.
  4. Already have a relationship or met with them recently? Follow-up by phone or email.

With any of these options, remember that you are the expert with a story to tell, so it’s your job to emphasize the impact of chronic kidney disease (CKD) on the people in your state and district.  Keep it local and make it personal!  Keep in mind to invite your local NKF staff to participate and share details about your meeting with me (Andrew.Fullerton@kidney.org).

Meeting them at their office

Why set up a district meeting at the office? 

Simply, you get the most “bang for your buck.”  You get time with your legislator, or their staff, in a quiet setting and have their attention solely on you.  Building a relationship with your legislators and their staff will yield concrete benefits and set the stage for ongoing discussions.  Typically, they will dedicate 15-30 minutes to meet with you and discuss topics important to you.

How do I go about this?

Every lawmaker has at least one district or state office and many have two or more.  First, read this short guide.  Then call or email your legislator’s district office (Who are your legislators? Click here) and ask to schedule a district meeting.  Tell them what you would like to discuss and who will be joining you for the meeting.

What should I talk about? 

Your story is the first thing to talk about!  You are the expert on living with CKD and you are the inspiration.  Then, talk about policy topics related to CKD that interest you.  I suggest discussing the Living Donor Protection Act (H.R. 1270) and living donation; early detection and management, or funding research and other programs related to CKD.  Talk about how CKD and policy topics, like the above, impact constituents in their district or state.  Use the state CKD fact sheets here.  Consider inviting your legislator to attend an upcoming NKF event or a CKD related facility, such as a dialysis or transplant center, next time you go.

Who else should I invite to join me?

Contact me (Andrew.Fullerton@kidney.org) or your local NKF office.  We would love to participate or find others to join you!  Also, consider inviting your local Kidney Advocacy Committee members to join you.  Finally, don’t forget that you probably have friends with CKD, your family who helps care for you, and others involved in your care that you can invite.

Anything else I should do?

Follow up!  Make sure to send a thank you note by email and a handwritten thank you.  Keep in regular contact and offer to be a resource for their office.  Send them leave behinds on the issues and impact of CKD in your emailed thank you.  Also, communicate about your meeting on social media. Post a picture of you at the meeting with a thank you.  Put in a line about your discussion of CKD and legislative policy.   Share this with their office.

Town Halls

If you have been reading or watching the news, you have seen an article about town halls held by lawmakers.  These can often be contentious events, but are an excellent opportunity to discuss CKD policy and issues in a public setting.  They also allow you to participate with a large number of kindred souls who want to advocate for kidney patients.  These events are often in-person, but can also be on Skype, via conference call, on Facebook, or other mediums.

How do I find out about town halls?

There are numerous ways.  The best is to sign up on your lawmaker’s mailing list.  There are various online resources, such as the Town Hall Project, that collect information about upcoming town hall events.  Your local newspapers may also list upcoming town hall events in their local news and events section.

How do I separate myself from the protesters?

First off, be friendly and polite. Being combative or frustrated can cause your message to get lost or lose its impact.  Thank them for their service, even if you don’t agree with them or their politics.  Like an office meeting, have a short elevator pitch that tells your story and make sure you have specific asks and/or good questions.  If they have supported CKD legislation or joined the Congressional Kidney Caucus, be sure to thank them for doing so!  If you are attending with others, be sure to support each other by applauding after your fellow attendee finishes speaking.

Also, arrive early!  Town halls are very well attended now, so as a result, it is harder to get in – let alone get a good seat.

Are there other things to consider?

One benefit to a town hall event is that there will be reporters on scene.  Consider taking a moment to introduce yourself to them.  Share your story with them and why you are there.  If you would like help preparing for this, contact us.  Please also be sure to invite your local NKF staff, friends, family, supporters, doctors, and others who can talk about CKD and its local impacts.  Finally, consider recording your lawmaker’s responses to your questions and sharing those with NKF staff.

Other local events

Town halls are not the only local events that lawmakers go to.  You may also find them at county or state fairs, job fairs, ribbon cuttings, or other large public events. Lawmakers’ offices often will have a booth at events like county fairs, where they (or their staff) will meet with constituents.  This is a great opportunity to speak with them in an informal setting.

Are you a member of a Chamber of Commerce, VFW or Legion post, Kiwanis or Lions Club, or other similar organization that hosts large events?  Is your membership organization hosting a monthly meeting or other big event?  Consider inviting your legislators to meet with and address your group at the event. This is a great opportunity to create your own opportunity to meet and interact with your lawmakers.

For these events, many of the same rules apply that were discussed in the town hall section above.  Be polite.  Have an elevator pitch with your story and requests.  Have questions prepared ahead of time.  Invite others impacted by CKD to come.  Invite the local NKF office to participate!

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30 million Americans with CKD: Action is Needed Now

An estimated 30 million Americans are affected by chronic kidney disease (CKD) and most do not even know they have it.  This newest data comes from the Centers for Disease Control and Prevention’s (CDC) CKD Surveillance Program and is higher than previous estimates.  This reflects that 1 in 7 Americans have CKD and that most of it is going untreated. This should serve as a warning alarm that we need changes to our healthcare system to promote and improve earlier detection and treatment of CKD and to invest greater Federal dollars in public awareness and programs that address this largely ignored public health challenge.

An estimated 1 in 3 Americans are at risk of CKD due to diabetes and hypertension.  Early detection and treatment can delay or prevent progression to end-stage renal disease (ESRD) and potentially reduce risk of cardiovascular events and death in those with CKD. However, our health care dollars and our system is focused predominately on treatment of ESRD. An additional and equal focus on addressing CKD early on is needed.  Earlier detection and treatment also allows those that will ultimately progress to ESRD the opportunity to receive education on treatment options, including opportunities to avoid dialysis by receiving a pre-emptive transplant or electing to do dialysis at home.

The National Kidney Foundation is committed to engaging key policy makers, health insurers, and health care professionals on specific solutions to address this public health challenge.  These include:

  1. Promoting CKD early detection, treatment, and awareness within public programs and initiatives that focus on diabetes, hypertension and heart disease
  2. Aligning health insurance reimbursements to clinicians with improved early detection and treatment of CKD in those at risk and with the disease.
  3. Creating greater opportunities for patients who progress to ESRD to receive a kidney transplant
  4. Investing Federal dollars into research and programs that tackle this substantial public health challenge

Will you join us in our effort to make CKD a public health priority?

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