By Troy Zimmerman, Vice President Government Relations, & Tonya Saffer, Senior Health Policy Director
Our Government Relations and Policy Team wishes you a Happy New Year and thanks you for your role in helping us achieve favorable policy milestones for kidney patients in 2014. Here are the top highlights of our efforts:
- Prevented proposed regulations that would have limited physicians’ and transplant recipients’ abilities to choose the right combination of immunosuppressive drugs to meet individual patient needs. As a result of our advocacy, immunosuppressive drugs will continue to be a protected drug class under Medicare Part D.
- Secured additional patient protections for health insurance plans sold through the new Health Insurance Marketplace implemented from the Affordable Care Act (aka Obamacare). NKF successfully advocated to ensure that health plans could not discriminate against kidney patients by instituting waiting periods for coverage of kidney transplants, or by limiting coverage or benefits because someone has kidney failure.
- Delivered expert testimony at the Food and Drug Administration’s (FDA) hearing on revising food labels. NKF supported the FDA’s proposal to include calcium units and potassium on the food labels and requested the agency also include units of phosphorus to help kidney patients make informed decisions about what they eat. A final decision on food labels is still pending.
- Introduced Legislation to Protect Living Organ Donors. NKF worked closely with Representative Jerrold Nadler (D-NY) to introduce the Living Donor Protection Act, which promotes organ donation and protects access to disability, long-term care, and life insurance for living donors. The legislation would also add living donation to qualified leave under the Family and Medical Leave Act.
- Prevented legislation that would have lessened hospital accountability for preventing hospital re-admissions for dialysis patients. A little known clause in legislation introduced in early 2014 could have reversed progress that has been achieved between hospitals and dialysis facilities to better communicate and coordinate care for patients who are admitted to the hospital. NKF identified the clause and successfully advocated for its removal from the bill.
- Protected patients’ ability to make end of life decisions by defeating a proposed regulation that may have required terminally ill dialysis patients to give up dialysis before entering hospice care.
- Held the 1st Annual Kidney Patient Summit. NKF hosted four other kidney patient organizations in Washington, DC for a summit that brought together over 50 kidney patients with diverse causes and experiences to advocate for more research funding and better coverage of immunosuppressive drugs to protect kidney transplants.
- Successfully supported patient-centered quality measures in the Medicare ESRD Quality Incentive Program.
- Maintained funding at the previous year’s level for organ transplantation activities (including financial assistance for living donors) under the Department of Health and Human Services and maintained funding for the Chronic Kidney Disease Program at the Centers for Disease Control and Prevention. The National Institute of Diabetes and Digestive and Kidney Diseases (part of the National Institutes of Health) received a $5.4 million increase for 2015.
- Helped expedite the FDA’s decision to temporarily permit importation of peritoneal dialysis solutions, in short supply, from Europe.
- Protected dialysis patients’ access to medication and prevented patients from being caught in the middle of insurance disputes.
- Defeated cuts to incentives in Medicare Advantage Plans to detect Chronic Kidney Disease earlier. In the past, Medicare Advantage plans have received extra payment for caring for patients with kidney disease. This has allowed some plans to provide additional, necessary care to help stop or delay patients’ progression to kidney failure and reduce their risk of death. In 2013, Medicare removed these additional payments for people with CKD stages 1-3, but in 2014 NKF advocated for the payments to be restored and CMS compromised by partially restoring the payments. These payments help promote earlier detection and management of CKD, which is a top priority for NKF.
- Helped build support for the Chronic Kidney Disease Improvement in Research and Treatment Act, which aims to promote CKD research and education, expand care coordination efforts and protect access to care for dialysis patients.
- Supported equal pay for physicians treating in-center and home dialysis patients who are hospitalized. Physicians who care for home dialysis patients will now receive their full monthly Medicare payment even if their patient is hospitalized for part of the month, just as they always have for their in-center patients.
As a voluntary health organization, NKF recognizes the strength of partnerships and coalitions and we know our advocacy work is stronger when alliances are formed. NKF worked in partnership with many patients, healthcare professionals, researchers and research institutions, and organizations dedicated to improving healthcare and kidney care in order to realize many of these achievements. We look forward to working with you on new successes in 2015!
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Kudos on the great strides made last year in legislation helping kidney patients. Those strides have not trickled down to my family yet. Not enough has happened to help patients afford dialysis. Out-of-pocket expenses aren’t affordable for the middle class even. Our biggest problem, beside the need for dialysis, is paying for dialysis. We are not getting the local support from our caregivers. I ask for help from social workers, nurses, physicians and anyone else I can think of and I get no answers to the money issue. No one seems to have any suggestions and we are frustrated. My husband has Humana Advantage policy and has been on dialysis for a little over a month. We can’t sleep at night worrying about the bills already piling up. It directly affects his outlook on wanting to continue to live. He doesn’t want to leave me with astronomical medical bills. It seems that THE person I am told that I need to talk to is never around. It feels like they watch the parking lot for us to drive up and hide from us. We are new to this and don’t know how to navigate THE SYSTEM. Any suggestions would be appreciated.
Hi Donna, thank you for your comment. I have forwarded your concerns to our NKF Cares Patient Information helpline, email@example.com, and someone should be in touch with you shortly.