Meet Ewo Harrell – Winner of Rich Salick Memorial Scholarship

Ewo Harrell moved to Paris, France after graduation from Union College in NY, in hopes to gain experience for a future career in Foreign Service.  But in 2011, less than a year later, Ewo became very sick and French researchers and physicians discovered she had a rare condition called “collapsing glomerulopathy” combined with lupus.  The addition of lupus made the kidney disease aggressive and difficult to treat.  Ewo began hemodialysis treatment indefinitely while recovering from complications from kidney failure.

Upon returning to the U.S., Ewo continued hemodialysis and began interning with the U.S. House of Representatives.  In early 2012, Ewo was encouraged by her in-center social worker to apply to participate in the National Kidney Foundation’s World Kidney Day advocacy event in Washington, D.C. “The experience changed my life,” says Ewo.  “I realized the power we as patients have to make a difference.”

At this event, Ewo reached out and met with others on dialysis and kidney transplants.  She connected with these individuals – especially some of the younger advocates – and was excited to learn that others share her desire to live a fulfilling life despite the challenges that kidney disease often brings.  Ewo attributes her participation in this NKF event as the catalyst for becoming an active NKF volunteer and advocate.  Ewo has since helped facilitate kidney screenings and has spoken at various events organized by the local NKF of Florida.

In October 2012, Ewo was placed on UNOS’ transplant waiting list, but her younger sister stepped forward and was found to be a match!  In July 2013, Ewo received Ayotunde’s kidney.

During National Kidney Month in March, Ewo was invited to the NKF’s First Annual Kidney Patient Summit in Washington, D.C.  As someone who has participated in advocacy events before and is familiar with Congress and legislation on kidney disease, Ewo led a group of Florida advocates around Capitol Hill.  With her new kidney, Ewo was able to share her new perspective as a kidney transplant recipient.

After meeting Ewo at NKF’s World Kidney Day event back in 2012, it was clear to NKF Constituent Services Director Erin Kahle that this vibrant young woman was driven to tell her story and empower others.  It wasn’t until they were reunited at the Summit in 2014 that Erin realized just what challenges Ewo was privately dealing with over the past two years.  “The changes in Ewo’s energy level and smile were just incredible” said Erin after seeing the new and improved kidney recipient.  As if her passion and enthusiasm wasn’t clear enough before, Ewo radiated with a renewed sense of self and purpose.

Ewo recently spoke at the 29th Annual NKF Rich Salick Pro/Am Surf Festival where she was also honored as the first Rich Salick Memorial Scholarship award winner.  Rich was a three-time kidney recipient (one from each of his brothers over the span of 30+ years!), who devoted his life to raising awareness, educating, and supporting those diagnosed with kidney disease.  Rich passed away in 2012, but his legacy lives on in the Surf Festival that he and his twin brother Phil (his first kidney donor) started in Cocoa Beach, FL, over 29 years ago.  The scholarship program was established by the NKF of Florida to recognize students who exemplify the characteristics of Rich’s active community service.  Ewo is certainly deserving of this special award.

The role of advocate so clearly fits Ewo, and it has now become her career path.  Ewo will be attending Brown University School of Public Health in fall 2015.  She aspires to have a career in international public health, and to create a non-profit that provides scholarships, fellowships, and internships for youth with chronic illness.

In the meantime, Ewo continues to raise awareness about kidney disease, dialysis and transplant.  She plans to participate in the World Transplant Games in Argentina in the summer of 2015 to showcase that transplantation works.  There is no doubt that Ewo will continue sharing her vibrant smile and advocating for others affected by kidney disease.

Ewo before surgery

Ayotunde and Ewo addressing the crowd at the 29th Annual NKF Rich Salick Surf Festival

Celebrating Ewo’s one year kidney-versary

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NKF Responds to Medicare’s Proposed Changes to Payment and Quality Programs for Dialysis Facilities

Back in July we shared the Centers for Medicare & Medicaid’s (CMS) proposed changes to dialysis payment and quality incentive program.  After gathering input from kidney patients and professionals we issued formal comments to CMS, which included recommendations for revising their proposals to strengthen patients’ access to high quality care.

Our concern about the proposed changes to payment is that rural facilities that already, on average, lose money treating Medicare patients would receive payment cuts.     Dialysis providers are likely to close facilities that continue to lose money, which could cause patients to face greater transportation challenges if they have to commute further for dialysis.  NKF recommended that CMS make changes to the way it pays for dialysis to ensure facilities in rural areas are able to cover the costs of providing the care that is needed to improve the health of their patients.

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NKF Expresses Disappointment Over Dialysis Five-Star Rating Program

CMSThe Centers for Medicare & Medicaid Services (CMS) is planning to implement a new program to help patients and their loved ones better understand the quality of care delivered by dialysis facilities through a five-star rating system. While the National Kidney Foundation (NKF) appreciates the efforts of CMS, we are disappointed by their announcement on September 10, 2014 that it does not plan to make changes to the Dialysis Five-Star Rating Program before rolling it out. Instead, CMS will delay the program launch from October 2014 to January 2015 in order to engage in a patient education effort about the system.

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How I Helped the Institute of Medicine Understand How to Better Involve Patients in Healthcare

By Caroline Wilkie

IMG_0373I am a kidney patient who has been on dialysis for the past four and a half years. I am passionate about spreading awareness about kidney disease. So when I got an invitation to speak at the Institute of Medicine last month, I was excited and a bit nervous—I am not a huge fan of public speaking! I was part of a panel that spoke at the Evidence Communication Innovation Collaborative meeting on shared decision making in end-of-life care and chronic illnesses. This is obviously an important, sensitive topic that needs to be addressed. Shared decision making is a collaborative process that allows patients and healthcare professionals to make decisions together. It utilizes the experience of the professional while also considering the preferences of the patient. Often, patients are not fully informed of all our care options. This process ensures patients have the information we need to make decisions and empowers us to take control of our health.

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Medicare Rules that You Won’t Have to Choose Between Dialysis and Hospice if You Have a Terminal Illness

Dr. Beth Piraino, NKF President

As a follow-up to our post End of Life Decisions for Dialysis Patients: Update on Proposed Medicare Rule, we are pleased to report that the Centers for Medicare & Medicaid Services (CMS) have affirmed that dialysis patients who enter hospice for a terminal illness unrelated to their kidney failure may continue to receive dialysis services paid for under Medicare Part B. This is a great relief for patients and their families who have been diagnosed with a terminal illness and wish to enter hospice care. End of life decisions are not easy for anyone and hospice care can provide patients with palliative care and the psychosocial support necessary to help patients and families through this difficult time. The National Kidney Foundation is pleased that CMS continues to recognize the need for patients to have continued access to dialysis when entering hospice care for an unrelated condition.

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Defining Quality Care: Is There A Disconnect Between Patients and Medicare?

The Centers for Medicare & Medicaid (CMS) has implemented many initiatives to ensure that dialysis facilities provide high quality care to Medicare beneficiaries.  These include a pay for performance program and a website where users can compare dialysis facilities to one another, among other activities geared to monitor, track and encourage improvement in the quality of care dialysis facilities provide.  Now, CMS has stated it will launch a new program later this year that rates dialysis facilities using a five star rating system.  NKF wanted to better understand how patients judge quality as well as determine their knowledge of Medicare’s public reporting on quality programs.  Therefore, we surveyed dialysis patients and their families through an online survey and received nearly 1,000 responses. [1]

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National Kidney Foundation Supports Legislation Protecting Living Organ Donors

The National Kidney Foundation (NKF) supports the Living Donor Protection Act (H.R. 5263) introduced today by Representative Jerrold Nadler (D-NY), along with Representative Michael Burgess, MD (R-TX)  to promote organ donation and protect the rights of living donors. The NKF is a longtime leader in organ donation and transplantation in the U.S. and believes that in order to increase the national pool of organ donors, it is critical that living organ donors do not bear any unnecessary burdens or restrictions that would serve as barriers to donation. This bill prohibits insurance companies from denying or limiting life, disability and long term care insurance and from charging higher premiums to living organ donors. The bill also clarifies that living organ donors may use time granted through the Family and Medical Leave Act (FMLA) to recover from transplant surgery and finally, the bill directs the department of Health and Human Services to add information on these new protections to its materials to encourage more Americans to consider living donation.

The NKF is grateful for Rep. Nadler’s living donation efforts and for Rep. Burgess’s ongoing leadership on transplant initiatives. The NKF has advocated for these protections for years and is hopeful that this bill will increase the rate of living donation in this country and shorten the national transplant waiting list. Graft survival rates for living donor transplants are consistently higher than those of deceased donor transplants and therefore, passing this bill and increasing living donation will positively impact the health of transplant recipients. Increasing living donation also represents an economic cost-savings since fewer patients will need second or third transplants. Living donors are American heroes and the National Kidney Foundation believes they should be celebrated and their actions promoted so more will follow suit and many more lives will be saved. Take action to protect living donors today.

 

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Medicare Beneficiaries with Kidney Failure Have the Highest Out-of-Pocket Spending

On July 21, 2014 the Kaiser Family Foundation released a report on out-of-pocket expenses paid by Medicare beneficiaries.  Not surprisingly, the report identified that individuals with end-stage renal disease (ESRD) have the highest out of pocket costs associated with their care, spending on average in 2010, $6,918.  Since 1972 the Medicare ESRD program has been a life-saving safety net for millions of Americans who have experienced kidney failure, but the cost of care to patients for dialysis and transplantation can still be high, particularly when patients do not have access to supplemental insurance.

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Breaking News: Conflicting Court Rulings Create Confusion Around ACA Premium Subsidies

gavelYou may have heard today that the U.S. Court of Appeals for the District of Columbia Circuit issued a 2-1 decision that could threaten the future of health insurance premium subsidies under the Affordable Care Act (ACA). This is relevant in the 34 states where the federal government runs the exchange under Healthcare.gov. Then just a few hours later, the U.S. Court of Appeals for the Fourth Circuit ruled on a similar case that premium subsidies continue to be permissible. So what does this mean for the future of premium assistance in the Marketplace plans? In short, today’s rulings do not change anything in the near-term.

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Changes Proposed to the Way Quality of Care is Measured in Dialysis Facilities

Dialysis staffAs we explained last week, the Centers for Medicare & Medicaid Services (CMS) issued a proposed rule on July 3, 2014 that will change how dialysis facilities are paid and how quality in the facility is measured. Last week we focused on the changes to the payment, and this week we focus on the quality changes.

The Medicare end-stage renal disease quality incentive program (QIP) reduces Medicare payments to dialysis facilities that do not meet certain quality standards. The idea, commonly known as pay for performance, is meant to encourage healthcare providers to improve the quality of care they deliver. CMS measures performance through a defined set of quality measures.  Each year, every dialysis facility is given a total score based on its achievement of these quality measures as compared to the national average and the facility’s year over year improvement in the measures.  If facilities don’t achieve a satisfactory performance score, they receive a reduction in payment ranging from 0.5% to 2%.

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