Funding campaign to ensure progress in the fight against kidney disease

By Lauren Drew, NKF Director of Congressional Relations

March means signs of spring, filling out college basketball brackets, and if you are a congressional staffer, fielding a TON of appropriations requests as budgets for the coming fiscal year are being written. It’s a multi-step process that can take months, but as participants in our recent Virtual Kidney Patient Summit know, now is the time to be making your ask!

This year, NKF is making a major push to increase federal government funding for kidney disease research, public awareness, and early detection programs, particularly given that 90% of individuals with kidney disease are unaware they have the condition. Not knowing their status prevents patients from accessing the early treatments that can slow progression to kidney failure and prolong their life. Unfortunately, in recent years kidney program funding has greatly lagged, and the negative results are clear.

In 2020, the National Institutes of Health (NIH) funded research on causes and treatments for diseases that equated to over $2,000 per AIDS patient, over $300 per cancer patient, and $50 per heart disease patient. But despite having a larger patient population, NIH spent less than $20 per kidney patient. A ten-fold investment increase in cancer research has led to a 400% decrease in cancer deaths over the last 15 years. For that same period, death and disability from kidney disease increased 65%. Research matters, and without sufficient funding, kidney patients will not see the kinds of innovative treatments and new understandings of disease progression that can save lives. That is why we are requesting a significant increase in NIH funding , and specifically requesting an increase in funding for the National Institutes of Diabetes, Digestive, and Kidney Diseases (NIDDK) that’s greater than or commensurate with the increase to NIH as a whole.

Public awareness and early detection are also key to improving the lives of patients. That’s why NKF is also requesting that the Center for Disease Control and Prevention’s Chronic Kidney Disease (CKD) Initiative, which focuses on a comprehensive public health strategy to address the disease, receive $15 million to expand their activities. Activities funded under this program support disease surveillance, help raise awareness of CKD and its complications, promote early diagnosis and treatment, and improve the quality of life for people living with CKD. This funding increase could accelerate and amplify its activities to educate patients as well as clinical professionals, and spur innovation by those serving the kidney disease community.

As a patient advocacy group, we believe that spending money on improving public awareness and early detection while increasing research into kidney disease is justified solely by its positive impact on patients. However, it is also important to note that if we don’t address kidney disease early, the expense of treating kidney failure could ultimately bankrupt the Medicare Trust Fund. The Medicare program spends more than $130 billion – over 24 percent of total spending – on patients with kidney disease. End stage kidney disease, which affects only 1 percent of Medicare beneficiaries, accounts for 7 percent of Medicare spending. If we don’t take these steps, we could have over 800,000 patients in kidney failure by 2030. The time is now to advocate for increased funding to fight kidney disease, and NKF is proud to lead the charge on patients’ behalf. Click here to add your voice and ask your Members of Congress to join us.

Success in Washington Led by Kidney Patient Advocates

On March 2^nd, more than 230 advocates from 43 states representing the National Kidney Foundation and five other kidney organizations met virtually with 243 legislators and their health policy staff. Their stories and experiences have already had an impact as legislators have begun to declare their support for the priorities of the kidney community. We also thank the hundreds of people who wrote to Congress in support of their fellow kidney advocates, telling Congress in one voice that kidney health policy needs reform!

Advocates also had the opportunity to hear from Debbie Allen during that evening’s Congressional Awards Reception, an American entertainment icon who recently joined NKF as celebrity spokesperson and who addressed the need for greater awareness and education about kidney disease, through initiatives like NKF’s 33% campaign. Following her comments, we recognized two kidney policy champions, Senator Bill Cassidy (R-LA) and Rep. Donald Payne (D-NJ), with NKF’s Congressional Award.

Senator Cassidy most recently served as one of four champions who introduced and led congressional efforts to pass the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act. Representative Payne, a fellow kidney patient who is currently on dialysis and the kidney transplant waitlist, has been a champion for kidney patients through support for our efforts in the House and mustering awareness about kidney disease among fellow African American Members of Congress.

Reception attendees also had the opportunity to hear from the winner of this year’s Salick Award, Armand Halter. A patient-advocate from Connecticut, Armand has led NKF’s efforts to pass a state version of the Living Donor Protection Act (HB 6387), including testifying on February 11^th. He has also been a mentor to fellow advocates and helped organize Connecticut advocates in their efforts to pass bills and raise awareness in the state legislature.

To watch video from the Congressional Reception, including from our Salick Award winner or to learn more about this annual event please visit our website and follow @nkf_advocacy on Twitter.

Hear from two of our advocates:

• I learned so much from my first Summit.  It showed me the importance of telling my story in my own words to policymakers.  You never know the impact it can have on the care of kidney patients. – Kenneth Sorenson, SC
• I always enjoy making the personal connections and putting faces and names to people I usually only know through email and phone calls. I also like helping our members of Congress see that there are real people affected by kidney disease; that kidney disease isn’t just numbers, it’s their neighbors and the people in their own backyard. The Summit always leaves me feeling energized to keep up the advocacy work! -Elizabeth Fortune, AR

Kidney Patients are Back on Capitol Hill – Virtually!

More than 230 kidney patients, living kidney donors, and care partners will meet virtually with their Members of Congress this Tuesday, March 2^nd as part of the National Kidney Foundation’s largest Kidney Patient Summit to date. This year we are once again thrilled to be joined by our kidney community partners including the Alport Syndrome Foundation, Home Dialyzors United, IGA Nephropathy Foundation of America, Nephcure Kidney International, and PKD Foundation.

Advocates Participating in the 2020 Kidney Patient Summit

Last year, advocacy by many of these same patients led directly to passage of the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act, following years of tireless work. This year, advocates are continuing to make their mark on kidney policy by sharing their stories and experiences and highlighting how other consequential pieces of legislation will help improve kidney health nationwide.

These bills include:

1. Living Donor Protection Act (S. 377/H.R. 1255) would end life, long term care and disability insurance discrimination against living organ donors in issuance and pricing, as well as codify Family and Medical Leave Act protection for living organ donors;
2. The CARE for Home Dialysis Act to promote home dialysis by reducing out-of-pocket costs, creating incentives for providers, and allowing staff assistance; and
3. Increased appropriations funding for the Center for Disease Control’s Chronic Kidney Disease Program and for NIH’s kidney research and programs.

Our advocates will also have the opportunity attend NKF’s Virtual Congressional Awards Reception, which will honor two outstanding champions in the fight against kidney disease, Senator Bill Cassidy (R-LA) and Rep. Donald Payne (D-NJ). Our honorees have consistently co-sponsored legislation to improve the lives of kidney patients and living donors.

They will also celebrate the extraordinary work of one of their fellow advocates with the presentation of the Richard K. Salick Advocacy Award. This prestigious honor is given annual to an individual who embodies the spirit of NKF’s dear friend and former colleague, Rich Salick, a former pro-surfer who underwent three kidney transplants and faced cancer, but still put the needs of other kidney patients ahead of his own.

Read more on the Summit’s webpage and follow our advocates on Twitter by following @nkf_advocacy and on all social media platforms with the hashtag #MyKidneysMyLife.

Championing Kidney Policy In States Across the Country

NKF advocates working at the state level started 2021 with a bang, as the New Jersey legislature unanimously passed its Living Donor Protection Act (LDPA) at the end of January. One of thirteen LDPAs that NKF is leading efforts to pass, it’s just one of several successes already this year. On February 4^th and 22^nd, the Pennsylvania and Kentucky Houses passed their own LDPAs. Since then, NKF advocates have testified on their own efforts in Connecticut and Washington.

Beth, April and Rep. McPherson Testifying on February 10th in Kentucky

To ensure that we’re also addressing barriers to care, NKF is leading a new effort to reform kidney health policy by working with local and state lawmakers as well as our kidney community partners in 11 states to introduce legislation to create kidney disease task forces. These efforts are already paying off, with our first hearing in Oregon expected soon.

NKF is also supporting efforts to offer paid leave for organ donors and ensure that end state kidney disease patients are not discriminated against by Medigap insurers.

Many state offices have also been working to ensure that states prioritize kidney patients and kidney care partners, along with residents of long-term care facilities and health care workers, in receiving access to COVID-19 vaccines. We also have been fighting to ensure that state governments prioritize the development of an infrastructure to support the dissemination of the COVID-19 vaccine to kidney patients by allowing dialysis facilities and transplant centers to provide vaccine shots.

NKF local offices have contacted governors and other key decision makers in 28 states where kidney patients and practitioners have reported difficulty in acquiring and distributing vaccines. These states include North Carolina, where NKF led more than 100 organizations and practitioners in a coalition letter to the governor to protest patients being downgraded to state 4 for vaccine access.

In New York, we are working with practitioners across the state to send a supplementary sign-on letter to reinforce the need for kidney patients to gain access to vaccine doses because of the severe shortage reported there. Most recently NKF Serving South Carolina submitted a letter to the state legislature at a hearing about vaccine access on February 17^th.

We hope you will join us in our efforts to reform kidney health policy in your states by signing up to become an advocate with NKF! We need every voice for kidney health to join our chorus to ensure that we are heard across the country.

Spotlighting and Addressing Ongoing Kidney Disparity Challenges

By Dr. Constance Mere, M.D.

Following a recent discussion with leadership at the Health Resources and Services Administration (HRSA), NKF has formally requested the agency to adopt practices that have been shown to help address the prevalence of Chronic Kidney Disease (CKD) in communities of color.

The irreversible, progressive loss of kidney function known as CKD does not discriminate. It affects people of all ages, gender and ethnicity. In contrast, kidney failure – the end result of CKD – affects ethnic minorities three to six times more often than Caucasians.

Many factors are responsible for this disparity in kidney failure amongst different ethnic groups, including higher prevalence of risk factors for CKD such as Diabetes Mellitus and Hypertension, lower socioeconomic status, lack of access to healthcare, lack of health literacy and genetic factors. Lack of health literacy is a modifiable risk factor that can be addressed through public health education programs and targeted patient education.

CKD has many different causes and treatments to prevent kidney failure, but in its advanced stage it has no cure. With available treatments, at best one can hope to slow down the progressive loss of kidney function to prevent kidney failure and its complications which include heart and blood vessel disease, bone disease, low red blood cell count, infections, frequent hospitalizations, depression, loss of income and others.

While there is ongoing research to find a cure for CKD, prevention of kidney failure can be achieved by screening individuals who are at the highest risk for developing progressive CKD and kidney failure, such as African Americans and Latinos. The goal is to detect CKD in its early stages when treatments such as blood pressure control can be most impactful in preventing kidney failure.

Screening for CKD involves collecting a blood sample to measure creatinine and a urine sample to measure albumin (protein) and creatinine. Equally important is screening for and treating common CKD risk factors such as hypertension and Diabetes mellitus in ethnic minorities so that they don’t develop CKD to begin with.

What Kidney Patients Need to Know About Medical Nutrition Therapy

By Jim Myers, NKF patient-advocate

Medical Nutrition Therapy (MNT) is an evidence-based medical approach to treating certain chronic conditions through the use of an individually-tailored nutrition plan based on a comprehensive nutrition assessment conducted by a Registered Dietitian (RD). A physician may refer an individual to a RD for this service. The goal of Medical Nutrition Therapy is to prevent, delay or manage diseases or conditions like Chronic Kidney Disease (CKD).

The Best Kept Secret in Kidney Advocacy: You Can Consult With An RDN At No Cost to You

If you are covered by Medicare, you can see an RD for free since all cost-sharing (deductible, copays) are waived for MNT services. According to the Academy of Nutrition and Dietetics, MNT “is covered by Medicare for diagnoses of diabetes, non-dialysis kidney disease, and 36 months post kidney transplant when a Medicare beneficiary has been referred by a physician, and when provided by an RDN who is enrolled as a Medicare Provider. Medicare covers 3 hours of MNT the initial year of referral and up to 2 hours of MNT for subsequent years. Hours are based on calendar year and cannot be carried over from year to year.

Additional coverage is available in the same calendar year with a second referral when more MNT is medically necessary. There could be many reasons why individuals may need more care, including but not limited to a change in diagnosis, medical condition or treatment regimen. Medicare Advantage (Medicare Part C) plans may also offer additional benefits, including coverage beyond these diagnoses covered by traditional Medicare. Registered dietitian nutritionists must become credentialed with each Medicare Advantage plan in order to provide and get paid for MNT to patients enrolled in Medicare Advantage.”

Current Legislation Supported by the National Kidney Foundation and the Academy of Nutrition and Dietetics

The Medical Nutrition Therapy Act (H.R. 6971 / S. 4504 in the previous Congress) amends the Social Security Act to:

• Provide Medicare Part B coverage of outpatient MNT for prediabetes, obesity, high blood pressure, high cholesterol, malnutrition, eating disorders, cancer, celiac disease, HIV/AIDS and any other disease or condition causing unintentional weight loss;
• Authorize the Secretary of Health to include other diseases based on medical necessity; and
• Allow nurse practitioners, physician’s assistants, clinical nurse specialists and psychologists to refer their patients for MNT.

This would increase the types of professionals who can make referrals to RDNs under Medicare Part B (currently only physicians can make such a referral) and expand the Chronic Diseases covered beyond CKD and Diabetes.

Those wishing to advocate in favor of this bill should be sure to explain to their lawmakers that MNT includes a nutritional diagnostic, therapy, and counseling services furnished by a registered dietitian for the purpose of disease prevention, management, or treatment; that MNT is an evidence-based, cost-effective component of treatment that can help combat many of the nation’s most prevalent and costly chronic conditions, including conditions that are contributing to poor COVID-19 outcomes; and that access to MNT is especially critical for communities of color that suffer from chronic disease health disparities driven by reduced access to care, healthy foods and safe places to be active.

The National Kidney Foundation plans to continue finding ways to advocate for expansion of the MNT and looks forward to working with patients and providers alike to help federal lawmakers understand the urgency in doing so this Congress.

Moving Our Kidney Patient Agenda Forward in Challenging Times

Following last week’s searing events on Capitol Hill, NKF is working to both support our longtime legislative champions during this challenging time and planning for the new Congress, where we’re excited to build on the kidney health victories that our advocates helped secure throughout 2020.

After passage of the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2019 late last year, our eighth annual and second all-virtual Kidney Patient Summit will take place on Tuesday, March 2^nd. Participants will be emphasizing the importance of continuing to make policy strides for kidney patients, specifically by increasing funding for kidney awareness programs, increasing access to home dialysis for those who can make use of it, and finally passing a federal Living Donor Protection Act to ensure those who give the gift of life don’t see diminished insurance coverage as a result.

We’re also working with state lawmakers across the country as legislatures reconvene for their 2021 sessions and after several states passed their own living donor protection bills last year. Meanwhile lawmakers in other states are focused on establishing kidney task forces that will bring together key stakeholders from both the public and private sectors, and pave the way for additional victories for kidney patients down the road.

As COVID-19 vaccines are distributed, we’ve also continued communicating with the public leaders responsible for distribution. Just prior to the holiday season we issued a statement in which we urged the federal government to prioritize kidney patients and kidney care professionals, along with residents of long-term care facilities and health care workers, in receiving access to COVID-19 vaccines to reduce their increased risk of severe morbidity and mortality caused by the novel coronavirus. 

For those who might have additional questions about the various COVID-19 vaccines or concerns about getting one once available, please check out our Facebook Live question and answer session from earlier this week with NKF’s Chief Medical Officer, Dr. Joseph Vassilotti, MD.

Additional advocacy wins from last year can be found below. Thanks again to every advocate who had a hand in making these victories possible and setting the stage for an even more momentous 2021.

Thankful for our advocates this Thanksgiving!

With Thanksgiving upon us, we wish you all a happy and safe holiday!

We also want to express how thankful we are at the National Kidney Foundation for you, and for all of our many amazing advocates who work tirelessly to improve kidney disease policy with their lawmakers in Congress, with government agencies and in state capitals across the nation. 

Since the start of 2020, NKF advocates nationwide have taken action more than 26,000 times, and as a result sent more than 41,700 messages to their federal and state representatives.  By sending letters and e-mails, making phone calls, posting on social media, and registering for our various advocacy events, our advocates have relentlessly pushed to improve Americans’ kidney health through legislation and public policy. 

One of the outcomes of all these actions is that the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (S. 3353/H.R. 5534) has more co-sponsorship support in Congress than ever before, and for the first time in two decades we are hopeful that Congress will pass this lifesaving bill before the end of 2020. 

Three states have passed Living Donor Protection Acts and several others have passed legislation to improve leave policies for organ donations.  This progress would not have happened if not for patient advocates sharing how much these protections mean to those looking to both give and receive the gift of life that a transplant can offer.  

Advocates like you have also met with legislators either in-person or virtually more than 600 times this year — including meetings with almost 200 federal representatives’ offices during our first-ever Virtual Kidney Patient Summit in September — and helped NKF host ten briefings for Congress and state legislators on topics that include COVID-19, health disparities, and other important policy priorities. 

More than 150 advocates met with their congressional offices and staff during our Virtual Kidney Patient Summit.

You’ve also been critical in helping us ensure the patient’s voice is heard in meetings with key regulatory agencies, including the Health Resources & Services Administration in the Department of Health and Human Services (HHS) and the Centers for Medicare and Medicaid Services. Along the way, many of you have also shared your personal stories explaining why you advocate for these issues right here on this blog.  

However you’ve shared your story, we’re grateful that you’ve chosen to do so and are excited to have you continue to advocate with us as we head toward a new year, where we look forward to additional victories and to building on our collective momentum! 

Thank you, and however you’re celebrating, we hope that you enjoy your Thanksgiving! 

A lame duck opportunity for Congress to help kidney transplant patients

By Matthew Fitting, NKF Director of Grassroots Advocacy

With federal lawmakers returning to Washington post-election, the next few weeks are their last opportunity to pass legislation ahead of a new year and new Congress. With more co-sponsors in the House and Senate than ever before, we’re working to make sure representatives understand that our bill extending immunosuppressive drug coverage needs to be a top priority.

Kidney patients and those that care for them can’t keep waiting – we need this bill passed before they end this Congress. So we’re asking congressional lawmakers who are already on board to make the case to their leadership for why this is an urgent need, as well as encouraging any remaining holdouts that they need to co-sponsor and back this bill to show they’re fighting for the kidney patients that they represent.

We were also glad to see a recent report from the Congressional Budget Office that confirmed one of our key talking points on why this bill is so urgently needed: in addition to getting transplant patients the lifesaving medication that they need, it will also save $400 million in Medicare spending over the next 10 years as a result of it helping patients healthfully maintain their transplant and avoid costly dialysis.

Currently, Medicare payment for immunosuppressive drugs that maintain kidney transplants runs out for certain patients after three years. This bill would end that three-year limitation and ensure that all kidney transplant patients are able to access the drugs that allow them to maintain their transplant. Medicare coverage three years after the transplant would be limited to the immunosuppressive drugs only and would occur only if the individual does not have other forms of insurance such as Medicaid, other public coverage, or group health insurance.

NKF thanks the thousands of advocates who have reached out to their congressional delegations to express how much passing this bill would mean to them and to every kidney transplant patient. If you haven’t yet, please take action then share this alert with your friends and family on social media. Because of your tireless work, we are closer than ever to passing this bill.

Medicare Open Enrollment season is here!

Medicare Open Enrollment season is here and runs through December 7^th. Just as in past years, open enrollment is a time for people enrolled in Medicare to change their Medicare Part D (prescription drug plan). A new change this year also allows people on dialysis or living with a kidney transplant who are eligible for Medicare to choose to enroll in a Medicare Advantage plan (managed care plan) instead of traditional Medicare if they wish.  

Medicare Advantage (MA) plans are offered by private insurance companies that contract with Medicare to provide you with all your Part A and Part B benefits, often also offering additional benefits such as prescription drug coverage (Part D) and dental, vision or hearing benefits. Annual out-of-pocket costs for in-network services are capped – meaning after you pay a specific amount out-of-pocket you do not have to pay additional out-of-pocket costs.  

Prior to 2021, Medicare Advantage (MA) plans were not offered to people with End Stage Kidney Disease (ESKD), so you may not be familiar with this option. While MA plans can offer many benefits, it is important for kidney patients to make sure their dialysis facility and transplant center are in-network providers with the MA plan they choose. To learn more about the benefits and considerations of MA plans watch NKF’s recent Insurance webinar.  

Medicare Part D plans change every year, so even if you stay in the same plan, the services, providers, and medications that are covered, and their cost, may change. Make sure you review your plan so you are aware of any changes that could affect what you pay for medications.  

Research has shown that only 13% of people enrolled in Medicare change their Part D plan, even when doing so could result in better coverage and lower costs. It’s very important that you research plans every year. Don’t assume that if you stay in your current plan that your costs and coverage will stay the same.  

Read this document (pdf) to learn more about how to review your Medicare Part D options and why it’s so important. You can compare your options for both Medicare Part D plans and Medicare Advantage plans on Medicare’s plan finder website.

Questions or want more information about insurance? Visit NKF’s Insurance explainer to learn more or contact our NKF Cares Helpline at 1.855.653.2273 or nkfcares@kidney.org.