A Big Day, a Big Plan

Day one of the Kidney Patient Summit began with a Facebook Live event featuring Kidney Advocacy Committee (KAC) member Ewo Harrell talking with NKF Senior Director of Health Policy Tonya Saffer. The video was viewed over 4,000 times on its first day. This was followed by KAC breaking off into grDSC00513oups to strategize and role-play for tomorrow’s meetings with members of Congress. The message was clear: donors are heroes that deserve to be protected, and the Living Donor Protection Act is a bill that requires no funding and should receive bipartisan support.

In the afternoon, Kent Bressler, of Kerrville, Texas, received the NKF’s Richard K. Salick Advocacy Award. The award is named after Rich Salick, a former pro surfer who underwent three kidney transplants and was a tireless advocate for kidney patients. It is the highest honor NKF bestows on advocacy volunteers.

Kent has been advocating for three years in Washington, DC, with his wife of 47 years, Catherine. He was diagnosed in 1982 with focal segmental glomerulosclerosis (FSGS), a disease that describes scarring in the kidney. This can lead to additional health problems including, but not limited to, large amounts of protein in the urine, loss of protein in the blood, high cholesterol, and high blood pressure. In 1987, Kent received a kidney from his brother Kip, a living donor who is also in attendance at the Summit. Still, for the past 28 years, he has been on immunosuppressive drugs that can have harmful, long-term side effects that he says he is beginning to experience. A registered nurse, Kent has represented NKF nationally, having participated in chronic kidney disease research reviews for the U.S. Department of Defense; and worked in Texas with NKF as a mentor for potential transplant recipients and donors. He is active in his church and has two daughters and four grandchildren.

The evening was capped off by representatives from the Alport Syndrome Foundation, Polycystic Kidney Disease Foundation, NephCure Kidney International, Home Dialyzors United and American Association of Kidney Patients sharing their organization’s efforts to improve the lives of kidney patients everywhere.

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The 4th Annual Kidney Patient Summit

hea04888Nearly 150 advocates from six kidney organizations will converge on Capitol Hill, March 6-7, to meet personally with lawmakers and put a human face on kidney disease during the 4th Annual Kidney Patient Summit, organized and led by the National Kidney Foundation (NKF). This largest event to date brings together, in a unified voice, NKF’s Kidney Advocacy Committee members and advocates from Alport Syndrome Foundation, Polycystic Kidney Disease Foundation, NephCure Kidney International, Home Dialyzors United and American Association of Kidney Patients. 

The attendees will share their stories and urge Members of Congress to co-sponsor the Living Donor Protection Act, which would prohibit discrimination in life, disability or long-term care insurance for living organ donors and protect jobs by adding living donation to the Family Medical Leave Act; support a pilot program which seeks to improve early detection, care and outcomes for people with chronic kidney disease (CKD); and support funding for CKD programs run by the Centers for Disease Control and Prevention, National Institute of Diabetes and Digestive and Kidney Diseases, and Health Resources and Services Administration.

At the Summit, individuals who have kidney disease, dialysis patients, living donors, family members and caregivers will be united by the affirmation and hashtag #MyKidneysMyLife to underscore the direct relationship between having at least one healthy kidney and living at all.

In addition to advocates’ visits with lawmakers on Tuesday, March 7, this year a special Summit press conference focused on living donation will be held the same day from at 1 p.m. EST, on Capitol Hill. Living organ donors and kidney recipients will share their stories, demonstrate the urgent need to increase living donation, and provide hope to more than 100,000 Americans waiting for a kidney transplant.

To learn more or support kidney disease patients, please visit: http://advocacy.kidney.org/4th-annual-kidney-patient-advocacy-summit/

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The Trump Administration Will Know that CKD is a Public Health Priority

By Tonya L. Saffer, MPH

Fueled by passion and urgency your government relations team is dedicated to ensuring that the Trump Administration recognizes chronic kidney disease as a public health priority. Along with NKF’s Executive Leadership, we will be working to engage leaders throughout the U.S. Department of Health and Human Services (HHS) and the agencies it overseas to include the Center for Medicare & Medicaid Services (CMS), the Center for Disease Control and Prevention (CDC), and the National Institutes for Health (NIH) on opportunities to improve earlier detection and care of CKD patients and access to transplantation for patients who progress to kidney failure.

In addition, to being an advocate for kidney patients, I am also a public health advocate and the two are clearly intertwined. In fact, it was my experience working with kidney patients and advocating on their behalf that fueled my decision to become a student of public health. Public health is really about protecting the health of populations.  “[It] is the science of protecting and improving the health of families and communities through promotion of healthy lifestyles, research for disease and injury prevention and detection and control of infectious diseases.”[1] We have seen many examples of advocacy successes in public health in the areas of diabetes prevention and care, and heart disease prevention and care. For example, the Federal government has invested substantial resources into developing and testing the Diabetes Prevention Program; that program was so successful that it is now included as a covered Medicare benefit.  The government is also piloting the Million Hearts: Cardiovascular Risk Reduction Model, which creates payment incentives for health care practitioners to focus on identifying people at risk for heart conditions and helping those individuals reduce that risk.  This is in addition to substantial Federal funds that have been dedicated to diabetes and heart disease prevention, treatment, and research programs.  However, despite the large overlap between diabetes, heart disease and chronic kidney disease – little attention has been focused on prevention, earlier care of CKD patients, or kidney disease research.  It is beyond time to change that.

medic-563425_1920This year we are doubling down on our efforts to meet with leadership in the Federal agencies that I mentioned above, and ask that an emphasis on early CKD detection and treatment be included in this year’s HHS strategic planning and healthcare quality improvement goals.  We will continue to develop and advocate for an innovative kidney care model that creates incentives for primary care practitioners to detect CKD earlier, in people at risk,  and to focus on treatment efforts delaying progression of CKD, improving health outcomes and collaborating with nephrologists on the care of patients who progress to advanced CKD.  This model will demonstrate that earlier detection and care can improve patient outcomes, allow patients whose disease progresses opportunities to make informed decisions about their treatment options before kidney failure and all the while lower health care costs.  We will ask for dedicated public health funding for CKD prevention, early treatment, and research efforts. We will urge the Administration to continue and further the commitment of the last Administration to develop initiatives and policies that increase access to organ donation.  We will also collaborate with our public health colleagues in the agencies to create practical solutions to integrating chronic kidney disease detection and care into initiatives and policies which promote diabetes and hypertension control.

In addition, we will continue to advocate relentlessly for kidney patients to maintain choice in health insurance options and to receive comprehensive education on all of those options.  With so many changes being proposed for health insurance it is critical that protections for kidney patients are strengthened.

Your support and engagement will be critical to our efforts.  There will be roles for our network of patients, family members, and healthcare professionals to help us achieve our goals and we will certainly keep you aware of them and invite you to work with us.

Thank you for the inspiration you all give me through your personal stories, to work harder and go further to bring about changes in government policies and programs that improve the lives of kidney patients.

[1] https://www.cdcfoundation.org/content/what-public-health

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The Affordable Care Act’s future and the impact on people with kidney disease

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

advocates-outside-capitolThe Affordable Care Act (ACA), also known as Obama Care, passed in 2010 and was intended to allow more Americans to access affordable and comprehensive health insurance coverage.  This law has been under great scrutiny and Republicans have wanted to repeal (cancel) it from day one.  Now that the Republican party controls the Presidency in addition to the U.S. House of Representatives and the U.S. Senate, it is highly likely the ACA will be repealed, but replacing it will not be an easy feat.

Many of you have asked what will become of the ACA and how changes will impact people with kidney disease.  While I can’t offer many predictions on what’s to come, I can help to answer the questions on what has happened to date and what it means.  I’ve also thrown in a few forecasting thoughts, but please don’t hold me to them as we are quickly learning to expect the unexpected this year.

We know that many people with kidney disease, prior to the ACA, had challenges getting health coverage because they had a pre-existing condition and could be denied insurance.  People with kidney disease also incurred a waiting period before getting coverage, or were faced with unaffordable monthly premiums.  We also know that people with kidney disease were more likely to reach the annual and life-time caps that were allowed prior to the ACA – this means some people would reach periods where their health insurance wouldn’t pay for their healthcare costs even though they continued to pay premiums. For most kidney patients who progress to kidney failure the Medicare End-stage Renal Disease (ESRD) program allows them to enroll in Medicare coverage regardless of age for as long they remain on dialysis.  Medicare will pay for a kidney transplant too, but after 36 months, Medicare coverage for those under age 65 ends unless the person has Medicare due to a disability other than kidney failure.

The National Kidney Foundation has always advocated for kidney patients to have access to health insurance and for the elimination of life-time and annual caps on coverage.  We believe kidney patients should not be discriminated against because of their health status.  We are concerned that if the policies which protect patients against insurers charging higher premiums and protect against insurers delaying coverage due to pre-existing conditions are repealed, it could set us back in our goal to improve earlier detection and treatment of kidney disease.  Testing and identifying the disease could prevent patients from obtaining health insurance.

The ACA has not been a perfect solution. Many kidney patients continue to face high out-of-pocket costs for services and medications, including for immunosuppressive drugs post transplant.  As a result, NKF has also advocated for reforms to the ACA which would make healthcare services more affordable.

To date Congress and the President have set the stage for repeal efforts and a dismantling of certain provisions of the ACA, but nothing has yet been repealed.  What has occurred in Congress is a budget resolution vote which essentially was an agreement to use a process known as Budget Reconciliation to repeal parts of the Affordable Care Act that deal with money and taxes.  The vote on Budget Reconciliation only requires 51 Senators to vote in favor. In contrast, if a stand-alone bill to repeal was introduced it would take 60 votes to overcome a likely filibuster and vote on a bill, a much more challenging threshold to reach.

Under Budget Reconciliation, Congress can’t repeal the pre-existing condition protections or the lifetime and annual limits on coverage.  However, it can repeal the tax penalties for those who don’t get health insurance (the individual mandate) and the subsidies and tax credits to help people afford insurance.  It can also take away increased funding to the states for Medicaid expansion. Any of these moves can decrease access to health insurance – including for those with chronic conditions.  For example, if states lose Medicaid funding they could restrict who they will cover under Medicaid and these decisions will vary from state to state. If the individual mandate is repealed, insurers may exit the individual insurance market or substantially raise premiums for everyone because it is widely believed that young, healthy adults will drop coverage, leaving only those with costly health conditions covered.  This creates unacceptable risk for the insurers and higher costs for consumers.

On Friday, January 20th, shortly after being sworn in, President Trump issued an Executive Order that appears to take aim at repealing the individual mandate as well as other parts of the ACA, but the Executive Order still requires the U.S. Department of Health and Human Services (HHS) to follow existing law.  This means the incoming Secretary of HHS will still need to issue proposed regulations, likely with a public comment period, and will still be restricted to upholding the requirements under the ACA.

Republicans have indicated a desire to repeal the individual mandate and to limit funding for Medicaid expansion, but it’s unlikely that these would go into effect before next year – even if they vote in the next week or two.  This may allow Congress time to come up with an ACA replacement bill.  Some Republicans have also indicated a desire to keep coverage for those Americans who have it today and to keep protections for pre-existing conditions.  The President has publicly stated his desire to increase access to insurance and even more boldly stated a desire to have coverage for all Americans. However, no replacement plans have been agreed to yet.

In a nutshell, nothing regarding the ACA has changed to date.  But, the stage has been set and action to repeal certain parts of the ACA through Budget Reconciliation could happen this week or next.  However, an ACA replacement bill could take much longer to develop and pass (also requires 60 votes). This could potentially put the coverage of millions of Americans in limbo until then.  Because of this, I urge you to take action to make sure millions of people keep their access to health insurance – including those with or at risk for chronic kidney disease.  Email your Members of Congress and ask them not to vote on repealing the ACA until a replacement plan is finalized.

Do you have health insurance because of the ACA?  Share your story with us in the comments below or email us at nkfadvocacy@kidney.org.

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National Kidney Foundation Advocacy Priorities for 2017

By Troy Zimmermantzpic-2015

We ended 2016 with many legislative and administrative successes to improve the lives of kidney patients, but also continue to face great challenges. With the introduction of a new Congress and a new Administration there remains much uncertainty in the future of healthcare coverage and access for patients, particularly those with chronic conditions, to include kidney disease.  Despite that uncertainty, kidney patients can count on the National Kidney Foundation to relentlessly advocate to protect kidney patients’ access to health insurance, increase access to kidney transplantation, protect living kidney donors, secure lifetime coverage of immunosuppressive drugs, access high quality dialysis care, and receive earlier chronic kidney disease (CKD) detection and treatment.

For those of you who do not know me, I have worked for the National Kidney Foundation for nearly 20 years, and I lead its Government Relations team. Our team leads NKF in advancing improvements in legislative and executive branch policies that will make kidney patients’ lives better.  I meet regularly with Members of Congress, their staffs and Federal Government agency staff to discuss the needs of kidney patients and educate them about kidney disease.  Like so many of you, I am a tireless advocate for better kidney care in this country.  I understand the challenges you and your family face.  My mother was on home dialysis and in-center hemodialysis and one of my brothers received a kidney from our sister and enjoyed nearly 20 years of additional life as a result.

However, advocacy of one person and one story is not enough and it is the stories you share with me and our team that I most often talk about when meeting with lawmakers.  These lawmakers also really want to hear from you directly, and that’s the other part of my job – helping you connect directly with your elected officials to share your stories and discuss the changes in policy that would benefit the lives of kidney patients.  There will be many opportunities to engage this year, and I hope you will join me so we can really effect change for kidney care and protect kidney patients lives.  With that I ask for your support and your leadership in advancing the following priorities most important to kidney patients like you.

  1. NKF will defend and protect patients access to insurance coverage. With the anticipated repeal of the Affordable Care Act and changes to the Medicare program being discussed, the National Kidney Foundation will remain steadfast in our advocacy to ensure kidney patients have access to insurance coverage of their choice and a stable Medicare program that serves about 90 percent of all patients with end-stage renal disease (ESRD).
  2. Advocate for reintroduction and passage of the Living Donor Protection Act. This bill will protect living organ donors and remove barriers to donation from discrimination obtaining life, disability or long-term care insurance discrimination and from job loss.
  3. Advocate for CKD early detection and management legislation that would establish a pilot program for patients with CKD, most who are completely unaware they have the disease. The goal of the pilot is to demonstrate that early detection of CKD, combined with effective and coordinated care that engages patients in the decision-making process, can improve the clinical outcomes for people with the disease and still lower health care costs.
  4. Advocate for lifetime access to immunosuppressive medications through Medicare. Legislation should extend Medicare coverage for immunosuppressive medications indefinitely and require that group health plans maintain this coverage, ensuring kidney recipients have access to these lifesaving medications. One example of legislation is the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act.  The need for this legislation was recently highlighted in this National Public Radio article.
  5. Appropriating increased funding in Fiscal Year 2018 for early CKD detection and treat efforts at the Centers for Disease Control and Prevention (CDC), the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and the Health Resources and Services Administration’s (HRSA) Division of Transplantation and Bureau of Primary Care.

You can take the first step in advancing our priorities today by emailing your Members of Congress a letter to support kidney disease priorities.

As part of our effort to show the impact of kidney disease on patients through our advocates, we have upgraded our advocate website, advocacy.kidney.org, and added new advocacy materials to our Advocacy Resources webpage.  This new website will allow you, those with kidney disease, and those who support kidney patients to promote our policy priorities, not only through emails to your lawmakers, but also through Facebook posts and Tweets to them.

We all look forward to your participation in NKF advocacy campaigns throughout the year. I hope you will follow me and my colleagues on this blog as we will continue to keep you updated on our progress, priorities, and activities.  My New Year’s kidney resolution is to share more with you.  What’s your kidney resolution? Please leave in the comments below.

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Kidney Advocacy Victories in 2016

Advocating relentlessly on behalf of kidney patients the National Kidney Foundation (NKF) is proud of the accomplishments we have achieved in advancing policy solutions that benefit people with kidney disease.   Our success would not be possible without you, so as we approach the beginning of a new year, we wanted to take the time to review our accomplishments, celebrate, and thank you for all your hard work.

 

Organ Donation and Transplantation Reforms

donation-saves-lives-child-photoThis year, NKF worked closely with Congress to introduce two key bills to make it easier for kidney patients to get and keep a kidney transplant.

The Living Donor Protection Act (H.R. 4616/S. 2584) protects living organ donors and removes barriers to donation including discrimination in obtaining life, disability or long-term care insurance and from job loss.

The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (H.R. 6139/S. 3487) extends Medicare coverage for immunosuppressive medications indefinitely and requires that group health plans maintain this coverage, ensuring kidney recipients have access to these lifesaving medications.

We will work closely with Congress in the new year to reintroduce and pass these bills.

White House Organ Summit

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Kevin Longino, CEO of NKF and Dorry Segev, Associate Professor at Johns Hopkins’ School of Medicine

At the request of the Obama Administration, NKF CEO Kevin Longino and Board Member Dr. Matt Cooper, participated in the White House Organ Summit in June.  The Administration and stakeholders announced a new set of actions that will improve outcomes for individuals waiting for organ transplants and improve support for living donors.  During the Summit, the National Kidney Foundation announced a new collaboration with Johns Hopkins University and Novartis to nationally launch the Live Donor Champion Program.  The Live Donor Champion Program aims to overcome common barriers to finding a living kidney donor.  It will teach people how to use their own personal connections and social networks to raise awareness about the need for kidney donors; and help to identify potential live donor candidates for a family member, friend or themselves.

21st Century Cures Act

On Tuesday, December 13th the President signed into law the 21st Century Cures Act (H.R. 34).  This legislation includes a provision that allows dialysis patients the option to enroll in Medicare Advantage plans. Patients will be able to access these plans effective on January 1st, 2021, this timing will allow us the opportunity to work with the new Administration to improve Medicare Advantage plans to better meet the unique health care coverage needs of end-stage renal disease (ESRD) patients. Additionally, the 21st Century Cures Act will enable patient self-management of chronic disease through telehealth and health information technologies, and works to address racial health disparities.

This legislation will also invest $4.8 billion in the National Institutes of Health (NIH) for research on drug addiction treatment, chronic disease research, and mental health treatment.

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New FDA Kidney-Friendly Food Labeling

On May 20, 2016, the FDA announced its final changes to the Nutrition Facts Label found on packaged foods.  The new labeling requires food manufacturers to list the amounts of potassium and calcium on the nutrition label beginning July 28, 2018.  This is not only great news for the general public looking to make healthier food choices, but a great win for kidney patients who often find it challenging to know how much potassium and calcium (minerals that kidney patients often need to limit) are in the foods they buy.

NKF has a long history of advocating for clearer food labeling.  This year our efforts have included testifying at an FDA hearing on the topic, submitting comments in response to the proposal, teaming up on the issue with the American Academy of Nutrition and Dietetics, and building a kidney community coalition to support these changes.

Improvements in the Medicare Dialysis Facility Star Ratings Program

Carrying on our efforts from 2015, NKF was successful in working with the Centers for Medicare & Medicaid Services (CMS) to change its Dialysis Facility Compare Star Ratings Program to make it more in line with how kidney patients want to receive information about the quality of care provided in dialysis facilities located where they live and travel.  Patients have commented that they prefer to see star ratings assigned based on how well the facility delivered care rather than having stars assigned to facilities based on a curve –  like high school students whose test scores are based on how well they did in comparison to their peers.  The new way CMS will assign star ratings better ensures that facilities that have only insignificant differences in performance compared to other facilities will still receive the star rating they deserve.  CMS has also followed another recommendation made by NKF to include patient reported measures into the star ratings – these new measures are expected to be added to the program in 2018 and will be based on patient responses to a large national survey.

Medigap Reform 

In Idaho, NKF met with success when the Department of Insurance released reforms to Medigap insurance which will prevent Medigap issuers from denying or limiting Medicare supplemental policies, due to health status, conditions, or claims experience.   It will cap the price for these policies at no-more-than 150% of policies for those over age 65, until the policyholder becomes 65.  The rule will also allow those who successfully appeal their denial of Medicare Part B benefits to receive the full six-month grace period to enroll in Medigap. The rule is pending approval by the Idaho legislature in 2017 and is expected to pass and become effective this Spring. Idaho will become the 28th state to offer Medigap plans to ESRD patients.

NKF also supported H.R. 6265, the Medigap Consumer Protection Act, which would, nationally, end the discriminatory treatment of Medicare beneficiaries under age 65 who have been denied access to Medigap policies based on preexisting conditions.   The Medigap Consumer Protection Act would help all Medicare beneficiaries with end-stage renal disease (ESRD) or who are disabled gain access to the supplemental coverage they need.

Senate Finance Committee’s Chronic Care Legislation

On January 29th, NKF released comments on the committee’s chronic care policy options white paper. 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.  This proposal was later introduced in the Senate as S. 3504, the CHRONIC Care Act.

NKF was pleased with proposals to improve the care of individuals with ESRD who are on dialysis, and urged them to include further reforms to improve care of individuals with chronic kidney disease.  Among our key priorities included in the legislation were: expanded access for patients to receive healthcare services using telehealth, including allowing home dialysis patients to use telehealth technology to “visit” with their nephrology practitioners in their own homes or at a nearby dialysis facility once a month, permanently authorizing Medicare Chronic Special Needs Plans, and permitting Medicare Advantage plans to tailor benefits offered to better meet the needs of people with chronic conditions.

Increased Funding for Kidney Disease Research and Transplantation

During 2016, NKF continued in its push to increase appropriations funding for kidney disease programs.  Of particular importance were the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), HRSA Division of Transplantation (DoT), and the CDC’s CKD program.  NKF was able to assist in increasing or keeping funding stable for these programs in proposed FY’17 appropriations legislation.  For now, funding was kept at FY’16 levels until April 28th due to Congress’ passage of a Continuing Resolution.

The 3rd Annual Kidney Patient Summit

Heller Senate Floor in Tie.PNGOn March 8th, 100 patient advocates from NKF and other kidney patient organizations met with 180 of their legislators and health care policy staff on Capitol Hill to discuss important strategies for better kidney care in the U.S.  In addition, more than 4,125 people took action to support this effort from home by sending letters to Congress, 180,000 people read tweets about the summit, and 39,000 people read posts on Facebook.   A direct result of this summit: nearly 200 lawmakers co-signed a Congressional “dear colleague” letter in support of increased NIDDK funding and 22 Representatives signed onto the Living Donor Protection Act in April.

Patient-Centered Outcomes Research Stakeholders’ Conference

NKF secured funding to hold the first ever kidney Patient-Centered Outcomes Research Stakeholders’ Conference.  The conference will bring together kidney patients, caregivers, stakeholders and academics to identify patient-driven national research priorities. The conference co-chairs, Kidney Advocacy Committee liaison, Derek Forfang, and member of NKF’s Council of Nephrology Social Workers (CNSW), Teri Browne, PhD, MSW, NSW-C, will start this necessary conversation about the importance of involving kidney disease patients and caregivers as active members in the research process.  The Stakeholders Conference is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award.  The Conference will be held in conjunction with the National Kidney Foundation Spring Clinical Meetings in Orlando Florida during April 2017.  Learn more about the conference by clicking here.

Kidney Advocacy Committee (KAC) Expansion

kac-growthSince its founding a year and half ago, KAC has grown exponentially in both size and action.  In the last  year, it has expanded by 250% to 158 patient advocates.  KAC members have served on numerous panels held by federal and state regulatory agencies, such as the Food and Drug Administration’s (FDA) panel on the Patient Focused Drug Development Initiative.  Members have been nominated to serve on the United Network for Organ Sharing’s (UNOS) Region 9 Minority Affairs
Committee
, the

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Kevin Longino and Leilah Sampson at FDA

Health Resources and Service Administration’s (HRSA) Advisory Committee on Organ Transplantation, and the Department of Defense’s Peer Review Panel on FSGS.  They have been featured in major publications, such as Ebony, and numerous hometown newspapers.  They also held approximately 250 meetings with their legislators in Washington, D.C. and in their home states.

Since 2015, KAC has:

  1. Strengthened NKF’s visibility as a patient-centered organization by becoming patient spokespersons,
    building relationships with local and national media outlets, and

    Kevin and Jeannie Seldner & Rep. Kevin Yoder District Meeting Oct 2016.jpg

    Rep. Yoder (R-KS) with KAC liaisons David and Jeannie Seldner

    representing the patient voice at numerous external conferences and meetings within the kidney health and broader medical community

  2. Developed and fortified NKF partnerships with Members of Congress to make kidney care a national priority and advance NKF’s public policy priorities
  3. Propelled forward NKF’s strategic plan around awareness, prevention and treatment of kidney disease by participating in NKF events and programs and providing input on NKF’s patient and public materials.

Our goal during the next Congress is to expand KAC to include advocates in every Congressional district!  To learn more about KAC or to become involved, click on this link.

Advocacy Communications & Outreach Success

NKF’s advocacy outreach had a landmark year.   In 2016, advocacy emails reached an average of 93,000 people compared to 68,300 in 2015.  Advocates sent 19,600 emails to Congress, compared to 4,900 emails in 2015 championing many needed improvements in kidney care.   On twitter our reach expanded from 121,000 in 2015 to 234,000 this year.  Our Facebook messages reached more than 675,000 people and the Advocacy in Action blog was read by 20,800 unique viewers.

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While we have made great strides this year in passing policy changes that will improve the care and lives of kidney patients, we will continue to face many existing and new challenges next year.  However, we won’t be successful without your support. Please visit our Advocacy Action Center and become an advocate to receive important alerts on contacting your Members of Congress about policy changes needed to prevent, detect and treat CKD early, to improve access to high quality kidney care and medications, and to increase access to kidney transplants.

NKF primarily relies on public donations, including the people we serve—patients, family members, friends and others to accomplish our mission please consider donating to help support our advocacy initiatives and other important work in 2017.

Stay tuned next week for a reveal of our full list of 2017 top Advocacy priorities!

 

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Congress passes the 21st Century Cures Act

The National Kidney Foundation (NKF) congratulates Congress on passing H.R. 34, the 21st Century Cures Act.  Passing the House and Senate by overwhelming votes, this legislation makes significant reforms and investments in health care.

For kidney disease patients, this legislation includes a provision that allows dialysis patients the option to enroll in Medicare Advantage plans.  Thousands of emails from NKF patient and professional advocates were sent in support of allowing dialysis patients the same opportunity as other Medicare beneficiaries to enroll in these plans and we are happy to acknowledge that your efforts paid off.  Patients will be able to enroll in these plans effective on January 1st, 2021.  While a few years away this allows time to implement changes to the Medicare Advantage program to ensure the plans are ready to support the healthcare needs of dialysis patients. Additionally, the 21st Century Cures Act will enable patient self-management of chronic disease through telehealth and health information technologies, and address racial health disparities.

Over the next ten years, the 21st Century Cures Act also will invest $6.3 billion in drug addiction treatment, chronic disease research, and mental health treatment, including $4.8 billion in additional funding for the National Institutes of Health (NIH).  It will also promote personalized medicine by providing authorization and funding for the President’s Precision Health Initiative.  The Cures Act also provides $500 million in additional funding for the Food and Drug Administration (FDA) and streamlines regulations for the review and approval of medical devices and medications, including prompting FDA to create a patient-focused development guidance that will expand patient experience input during the approval process – such as quality of life, treatment impact, and patient treatment preferences.

President Obama has announced he will sign the legislation.

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Idaho Takes a Leading Role on Medigap Reform

Exciting news for kidney disease patients in Idaho to be thankfuldeen_pic for this holiday season!

Idaho released its final reforms on Medigap insurance, which will make large strides towards helping give end stage renal disease patients (ESRD) under age 65 new options to get medical insurance coverage.  This new policy by the Idaho Department of Insurance, titled the “Rule to Implement the Medicare Supplement Insurance Minimum Standards Model Act,” will prevent Medigap issuers from denying or limiting Medicare supplemental policies, due to health status, conditions, or claims experience.   It will cap the price for these policies at no-more-than 150% of policies for those over age 65, until the policyholder becomes 65.  The rule would also allow those who successfully appeal their denial of Medicare Part B benefits to receive the full six-month grace period to enroll in Medigap.

Deen Vetterli, the National Kidney Foundation’s (NKF) CEO for Utah and Idaho, spearheaded NKF’s outreach on this important rule.  Reaching out to Idaho’s civic leaders, such as Health and Welfare Committee Chairman Heider and Dean Cameron, the Director of the Department of Insurance, she explained current insurance practices and changes needed to improve the lives of the more than 2,000 ESRD patients in Idaho.

Significant costs can be incurred by Medicare patients that make Medigap coverage necessary. For instance, the inpatient hospital deductible for Medicare under Part A is $1288. Dialysis treatments, which are typically needed at least three times weekly, are covered under Part B at 80%, and the cumulative out-of-pocket expenses can well exceed $7,000 annually. When kidney patients cannot afford the deductibles and co-payments associated with Medicare, it can have a detrimental effect on their health and access to healthcare.

This rule will be approved by the Idaho legislature in 2017.  After this time, policies will become available to those under age 65.

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A Historic Election

The presidential election was historic in many regards, including the first woman as a major party nominee and a nominee with no previous public office or military experience.  The Republican party will now have control of the White House, both Houses of Congress, and the possibility of a conservative Supreme Court.  Click here to see the NY Times’ election maps.

The question before those of us focused on kidney disease is what will President-Elect Trump and the Republican party do with their new political power?  What will the first priorities be?  What does this election mean for healthcare including insurance plans in the Affordable Care Act (also referred to as “Obamacare”), business’ group health plans, Medicaid expansion, drug pricing reform efforts, and value-based care and delivery system reforms that were implemented under President Obama as a method of improving patient outcomes?

We can expect the President-Elect and Republican Congress to make the repeal and replacement of the Affordable Care Act one of their first actions.  They also may pursue funding Medicaid and the Children’s Health Insurance Program (CHIP) under a block grant formula.  For a full list of the President-Elect and Republican leadership’s policy positions read this release by Deloitte.

Typically, significant legislative changes are difficult to attain and we do not know what this portends for healthcare in the U.S.  The Republicans still need to figure out what they want to replace the Affordable Care Act with, if they want to keep components of it, what method of repeal to pursue (via legislation or via Executive Order), and how to deal with opposition by healthcare stakeholders and the Democratic minority.  We will get our first real glances through President-Elect Trump’s selections for cabinet positions and during February when President Trump offers Congress his Fiscal Year 2018 budget plan.

With all the changes expected, now is the time to renew your efforts to educate your elected officials and their staffs at the federal and state level.  Use resources like these fact sheets to educate and inform them of the impact that kidney disease has on patients, families and providers in your congressional district and state.  Sign up to be an advocate with NKF and allow us to work with you to make sure that kidney disease patients are protected when changes begin to come forward. Contact NKF’s advocacy staff at nkfadvocacy@kidney.org or apply to be part of the Kidney Advocacy Committee (KAC).

The National Kidney Foundation will continue to advocate for kidney disease patients, living donors and their families to ensure that healthcare policy continues to benefit patients and their families. NKF historically has had strong champions in both political parties and we will continue to rely on and expand our support in Congress and the federal health agencies.  Please join us in this effort!

 

Information and statistics on the election:

Republicans Democrats Independents
U.S. Senate 52 46 2 (Vote with Democrats)
U.S. House 238 193 (4 undecided races)

 

Expected congressional leadership:

U.S. Senate

Senate Majority Leadership Senate Minority Leadership
Majority Leader: Mitch McConnell (KY)

Majority Whip: John Cornyn (TX)

Minority Leader: Charles Schumer (NY)

Minority Whip: Richard Durbin (IL)

U.S. House of Representatives

House Majority Leadership House Minority Leadership
Speaker: Paul Ryan (WI)

Majority Leader: Kevin McCarthy (CA)

Majority Whip: Steve Scalise (LA)

Minority Leader: Nancy Pelosi (CA)

Minority Whip: Steny Hoyer (MD)

Asst. Democratic Leader: James Clyburn (SC)

Congressional committee leadership related to health care policy:

Committee Republican Chair Democratic Ranking Member
Senate Appropriations Sen. Thad Cochran (MS)  Sen. Pat Leahy (VT)
Senate Finance Sen. Orrin Hatch (UT) Sen. Ron Wyden (OR)
Senate Health, Education, Labor & Pension Sen. Lamar Alexander (TN)  Sen. Patty Murray (WA)
House Appropriations Rep. Rodney Frelinghuysen (NJ) Rep. Nita Lowey (NY)
House Energy & Commerce Either Rep. John Shimkus (IL) or Rep. Greg Walden (OR) Rep. Frank Pallone (NJ)
House Ways & Means Rep. Kevin Brady (TX) Rep. Sander Levin (MI)

 

 

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Organ recipients share their experiences with FDA to promote innovation in immunosuppressive therapies

By Kevin Longino, CEO and Leilah Sampson, Kidney Advocacy Committee Patient Liaison

leilah-sampson-and-kevin-longino-9-28-16As kidney transplant recipients and advocates we were enthusiastic and hopeful to learn that the Food and Drug Administration (FDA) had scheduled a public meeting for organ transplant recipients to share their experiences with scientists and decisions makers in new drug development as part of the Patient Focused Drug Development Initiative.  For the past few years the National Kidney Foundation (NKF) has advocated for FDA to include organ recipients as part of this initiative, so we were pleased that our advocacy efforts were successful.  However, we also know following the meeting much more advocacy will be needed to advance solutions to the issues that organ recipients raised during the meeting and the National Kidney Foundation is committed to this effort.  First and foremost, if you are reading this and have not submitted your own comments on the questions raised during the meeting you can do so here.  Additionally, since we were selected as panelists we wanted to share our thoughts and experiences at the meeting.

Prior to the event, we were asked to respond to ten questions divided into two topics on life post organ transplant. The first topic was titled, “Disease Symptoms and Daily Impacts That Matter Most to Patients”.  This topic focused mainly on how your symptoms (post transplant) affected you emotionally and physically in completing daily tasks. The second topic titled, “Patients’ Perspectives on Transplant and Treatment Options” focused more on how you are managing your post transplant treatment regimen. As we mentioned, you can submit your own responses to these questions as well and we encourage you to do so.

Leilah participated in the panel on topic one, as one of five panelists and the only adult kidney transplant recipient alongside of the Pediatric kidney representative and lung, liver, and heart recipients.  In preparation for the meeting, Leilah met with FDA staff in charge of the meeting who expressed appreciation for her honesty about her post transplant experience not being “rainbows and sunshine”, but more so trial and error. They also felt because she was a transplant newbie; she could represent a fresh perspective that would help balance the other seasoned panelists perspectives. FDA briefed Leilah on what to expect when she arrived and to prepare a narrative style version of her comments (as patients get nervous on the panel). Leilah set the intention for her speech to reflect her life of self compassion and honoring her transplant process.

When we arrived at the campus we were appreciative to see so many patients, caregivers, researchers and FDA staff all committed to hearing the voices of organ transplant recipients. The first half of the day was all patient discussion on comorbidities, daily challenges, medications and side-effects post-transplant. Many recipients, like Leilah, shared their experiences having depression and anxiety post transplant. Many also highlighted social stigma as the public expecting them to be “cured” from disease with their new organ, when in reality the need to take multiple medications at specific times of the day, and that had various side-effects reminded them they were still not “normal”. Some participants indicated hesitancy to discuss symptoms post transplant with their healthcare professionals as they had received comments back that they should learn to adapt and instead focus on the fact they were still alive and no longer on dialysis.

Polling questions were asked of the audience and multiple choice responses given as options, but throughout the polling there were a significant number of patients who experienced challenges not captured by the multiple choice responses and instead indicated “other” experiences during the polling.  Some of the comments raised in those “other” categories included: fear of rejection, but also fear of infection, skin cancer, and other cancers due to immunosuppression therapies – many participants had also experienced these complications.

The addition of the afternoon sessions was different than past PFDD meetings for other conditions. The afternoon included scientific presentations and panels on non-adherence to transplant regimens and interventions to improve adherence.  Most of the patients participating in person indicated that while they faced challenges with taking multiple medications, overall they were adherent. Although they also recognized they were perhaps not reflective of all organ transplant recipients.  Webinar participants indicated through polling a greater difficulty with adherence than those participating in person. We and other participants discussed how we were active in working with our care team to modify dosing of medications to reduce side effects.  Kevin specifically indicated a need to have personalized immunosuppressive regimens, which could improve both adherence and reduce side effects.  We and other participants also acknowledged a need for greater psychosocial support from our care team post-transplant.  Of course, we were all supportive of one organ recipient’s comment on the need to have one magic combination pill that we only have to take once a day – oh and it could come with no side effects too.

We were surprised to see so little interaction from the FDA staff. They fulfilled their duty of hearing the voices of the patients. After a long day of discussions, presentations, and polling about symptoms and the impact of organ transplant regimens on patients; we left better educated but even more motivated. More importantly, we left with the obligation to spread what we learned from the research and opinions of other seasoned organ transplant patients to the pre-transplant community. I think we all agreed that laying the foundation for post-transplant life begins with implementing support and coping skills long before transplantation occurs. Although we have only scratched the surface of trying to understand how to better support organ transplant patients; we are pleased to know that the FDA, among many other organizations, are opening their ears to hear from us – the patients.  If you are an organ recipient please do take the time to send your responses to the FDA by November 27, 2017, they are listening and comments will be included in the final report.  You can also view the presentations and listen to the recorded meeting here.

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