By Troy Zimmerman
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.
- 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).
- 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.
- 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.
- 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.
- 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.