Summer 2012 Member e–Newsletter

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A Poem by Laura Secord

We are your kidneys
We are two, you see,
The twins that keep
Your blood so clean
We take the toxins that we find
And turn them into pee.
Without our work, you would not be.

We'll keep on working hard for you,
But please, don't load us down with sodas,
salt, and all those processed things.

To keep us working all your days,
And never dialyze:
Drink water eat
Food fresh and free of sodium and dyes.

NOTICE: eNewsletter Changes Coming…

The upcoming edition of the online CAP e-newsletter will be our last in its current format. Our goal has always been to keep our members in the loop with what we, as a Council and as individuals, are doing. We think we can do that just as well by sending out shorter, more regular reports which will include a Chair's Corner and any pertinent information for members. As always, the listserv will provide a forum for questions, comments and sharing of new material.

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Chair’s Corner

Barbara Weis Malone, RN, MSN, CFNP

Spring has sprung, tax season is over and summer is in full swing. May featured the NKF Spring Clinical Meetings (SCM12) where many of us met face to face for the first time. During SCM12, the CAP Executive Board transitioned its officers; I am honored to have been elected as the new Chair of CAP.

I have been involved with CAP since it was a tiny spark that needed fostering. When I attended my first NKF Spring Clinical Meetings eight years ago, I felt like I had found an environment of growth and learning that supported advanced practitioners. The Council of Advanced Practitioners has grown exponentially from a dream of four or five people to a thriving organization full of enthusiastic and dedicated nephrology advanced practitioners.

I feel so grateful to Kim Zuber, Laurie Benton, Jane Davis and the many APs who held the dream and have accomplished so much for the group in such a short time. CAP now serves as an umbrella for a vibrant group of practitioners dedicated to a myriad of opportunities in nephrology and our goal is to continue to grow and support those opportunities.

What does the future of CAP look like? To survive, it must be flexible and adaptive, just as the field of nephrology and medicine is ever-changing. The need for ongoing learning, the support of vital legislation and networking are more important than ever. APs are going to be called on to take a leading role in supporting our profession and our patients. CAP is me, you and that next person who enters the field of nephrology.

One change we have implemented within the Executive Committee is creating an Outreach Committee. Mandy Trolinger, PA, has agreed to chair this group. The committee is already working to create new ways to increase CAP membership and to reach out to patient organizations so they will know who we are. Members with fresh ideas are needed to join this new committee. E-mail Mandy to express your interest.

The 2012 NKF Spring Clinical Meetings is now a memory and we are looking forward to 2013. Unlike many other educational meetings, this one has increased its scope each year. It has grown because every single educational event is relevant, applies to practice and enhances our professional skills. The lectures are case-based and designed to challenge your knowledge. They are NOT didactic and they are chosen by us for us.

I am looking forward to the next year because I know you share my passion. Please feel free to email me. I would love to hear your ideas on what CAP can do for you!

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SCM12: A First-Time Attendee Perspective

Rachael Carlson, ANP

SCM 12As a first-time attendee of the Spring Clinical Meetings and a new nurse practitioner, I found the experience to be very worthwhile. There were ample opportunities for me to learn, network, and obtain new skills that will help me become a better health care provider. Plus, it was just plain fun!

The workshops were a wonderful opportunity to immerse oneself in nephrology. I attended the workshop focused on CKD clinics and received instruction on everything ranging from patient education classes to billing. It was a very good in-depth review that has made me more aware of the details of participating in and running a CKD clinic.

The session "Metabolic Panel Made Easy," presented by Charles Foulks, MD, far exceeded my expectations and I truly enjoyed the experience of hearing him lecture. Rather than just reviewing the metabolic panel, we examined a large number of common tests and procedures done in nephrology and the information I learned there is directly applicable to my daily practice.

I also really enjoyed the session about contract negotiations, billing, and reimbursement for advanced practitioners. As a new provider, the information presented was incredibly valuable in helping me prepare myself for a successful career. The rest of the conference prepared me so well to care for my patients; this session stood out because it will help me also take care of myself!

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Welcome to New NKF-CAP Executive Committee Member Mandy Trolinger, MS, RD, PA-C

Mandy Trolinger is a physician assistant, former dialysis patient, and two-time kidney transplant recipient. She received her Bachelor's Degree in Nutritional Sciences from Texas A&M University and her Masters from Oklahoma State University. After working as a renal dietitian for six years, she completed her Physician Assistant Degree at Red Rocks Community College in Colorado. She currently works as a PA with Denver Nephrology.

Mandy has volunteered with various organizations over the years, including serving on National Kidney Foundation with the Council on Renal Nutrition (CRN) and Council of Advanced Practitioners. She has also worked with the Renal Support Network (RSN) as a public speaker, patient lifestyle meeting planner and patient advocate. She has been interviewed on RSN's online radio show, KidneyTalk. Mandy is a past recipient of NKF's Regional Recognized Renal Dietitian and Program Excellence award. She has also authored and collaborated on articles pertaining to patient advocacy, oral health, and bone health. In 2009, she was chosen to ride on the Donate Life float in the Rose Parade in Pasadena, CA.

Mandy currently resides in Highlands Ranch, CO. In her spare time, she volunteers and spends time with her husband, two cats, and two "energetic" Labrador Retrievers.

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NKF PEERS Program: Assisting Our Kidney Patients

The National Kidney Foundation's (NKF) Peers Lending Support program is a telephone-based peer mentoring program that matches patients in need of support with others who have been through a similar situation. The Peers Program improves outcomes of people with chronic kidney disease (CKD), those on dialysis and those with kidney transplants through peer support, targeted education for patients and families and clinician awareness.

Studies show that peer support is highly effective in helping patients adjust to chronic kidney disease, dialysis, and kidney transplantation. Peer support can alleviate fears and normalize the emotional, mental, and physical aspects of living with a chronic illness. It improves depression, social isolation, self-esteem, and self-management, leading to better health and survival.

"People with CKD are challenged by anxiety and lack of knowledge about their condition," says NKF Educator Marilyn D. Swartz. "No one can provide peer support better than those who have walked this pathway themselves."

Mentoring helps the mentor, too. Evidence shows that people who help others have higher rates of physical health and life satisfaction, along with lower rates of depression. Helping others can provide a sense of purpose and reinforce the positive health management skills of mentors.

The NKF's Peers program was launched last summer. The program is completely free of charge and participants call a toll-free, automated telephone system to connect to each other (no one discloses personal phone numbers or incurs long-distance charges). The program completed its first mentor training last August and matched its first pair in September 2011. Currently there are about 50 mentors trained and over 100 people have been matched. Many others are benefiting from the online educational information and self-help management tools. The program continues to match patients in need of support with mentors every day.

"I cannot tell you enough what it has meant to have a mentor; she went above and beyond anything I could have ever expected," said one of the Peers participants, a CKD Stage 3 patient. "She was always so uplifting; answering all my questions and putting me at ease about living with this disease. She always listened to my concerns and questions and was a huge encouragement for me. I can honestly say that the times we spent talking were invaluable, and being able to speak with someone that could relate to what I was going through, priceless. Thank you once again for having such a wonderful program available."

NKF is actively seeking people in need of support to match with our trained mentors today! If you know of patients who might be interested in receiving support, please have them call toll-free 855-NKF-PEER (855-653-7337) or email nkfpeers@kidney.org.

For more information about the NKF Peers program, and to access free educational materials and clinician brochures please visit our web site. To learn more about the benefits of peer support, click here.

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NKF Advocacy News

World Kidney Day. On March 7-8, 2012, twenty NKF patient and family advocates gathered in Washington, D.C. to increase their congressional delegations' awareness of Chronic Kidney Disease. This was one of the most impressive and diverse group of advocates we have brought to Congress. This year's group consisted of four dialysis patients (three in-center, one on PD), six kidney transplant recipients, four living donors (two non-directed), two CKD patients, and four family members.

The advocates, selected from nearly 150 applicants to NKF from across the country, also attended our annual World Kidney Day Congressional Reception on March 7. Six Members of Congress, including Congressional Kidney Caucus Co-Chairs Representatives McDermott (D-WA) and Marino (R-PA), attended the reception and gave encouraging remarks to the participants.

The NKF advocates attended meetings in more than 80 House and Senate offices at which they discussed supporting Medicare immunosuppressive drug coverage for kidney transplant recipients, funding for the Chronic Kidney Disease program at the Centers for Disease Control and Prevention (CDC), and paying for oral drugs under Medicare's bundled payment system. Within a week, Senator Boxer (D-CA) and Representatives Capps (D-CA) and Cohen (D-TN) agreed to cosponsor S. 1454 and H.R. 2979 to extend Medicare coverage of immunosuppressive drugs. We anticipate having continued success convincing more Members of Congress sign on to this legislation in the coming weeks.

CDC Chronic Kidney Disease Program. As mentioned above, one of NKF's public policy priorities is continued congressional support for the Centers for Disease Control and Prevention Chronic Kidney Disease Program. The program receives dedicated, line-item funding of approximately $2.2 million annually through the Labor, Health and Human Services, and Education Appropriations Bill. NKF submitted written public witness testimony to the Senate and House Labor-HHS Appropriations Subcommittee. Our National staff, including our Chief Medical Officer, has met with health staffers for various Appropriations Members. We emphasize that cost-effective treatments exist to help slow the progression of CKD if individuals are diagnosed in the early stages (and this would reduce government spending under Medicare and Medicaid), but that CKD is asymptomatic in its early stages and is undetected without testing. The CDC kidney program consists of three aspects: a pilot program consisting of screening activities in eight sites nationwide to identify high risk individuals, an analysis on the economic burden of CKD and the cost-effectiveness of interventions, and a surveillance system to collect and interpret information on kidney disease.

S. 2163, Kidney Disease Equitable Access, Prevention and Research Act of 2012. Sen. Conrad (D-ND) has introduced legislation on behalf of Kidney Care Partners (KCP). Key provisions include new approaches to certification of new dialysis facilities to address opening delays, expanded access to reimbursed kidney disease education for Medicare beneficiaries to dialysis facilities, adding coverage to include individuals with Stage 5 kidney disease not yet on dialysis, and researching transportation barriers for dialysis patients.

Affordable Care Act. In April, the U.S. Supreme Court heard three days of oral arguments which included the individual mandate to purchase coverage. If the Court does not uphold the constitutionality of the mandate, it may also decide whether other provisions of the Affordable Care Act will remain in force or leave that decision up to Congress. This could be problematic for provisions that are already in effect such as the ban on lifetime limits on health coverage and reductions in out-of-pocket spending for Medicare beneficiaries who reach the coverage gap ("donut hole") in prescription drug coverage. In addition, a dozen states have created the health insurance exchanges envisioned by ACA. Will those states be able to operate those exchanges independent of federal law? This and many other provisions will remain unsettled until the June 2012 decision, or beyond.

Home Dialysis Summit. On March 29, 2012, an all-day policy discussion was held in Washington, D.C. to examine opportunities and barriers to home dialysis. NKF was a member of the Steering Committee. Approximately 70 clinicians, industry representatives, patients, and policymakers participated in the National Summit on Home Dialysis Policy. Discussion was centered on four topics: Educational, Training, and Implementation Challenges; the Impact of the National Reimbursement System; Quality Measures and Initiatives; and the Innovation Environment.

NKF President Beth Piraino and Past-President Allan Collins were among the panelists, and Troy Zimmerman of our National staff moderated one of the panels. A report will be issued later this year and will include key discussions and consensus policy recommendations to address opportunities to drive appropriate utilization of home dialysis and to identify pathways for collaborative action.

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