BOOK REVIEW: MARIE NEVER GIVES UP
ARE YOU BRAVE LIKE ME?
A STORY ABOUT A CHILD WITH A CHRONIC ILLNESS
BY MARY BALIKER
REVIEW BY JAMES MYERS
BOOK REVIEW: MARIE NEVER GIVES UP
ARE YOU BRAVE LIKE ME?
A STORY ABOUT A CHILD WITH A CHRONIC ILLNESS
BY MARY BALIKER
REVIEW BY JAMES MYERS
Self-Published, 2017
Publishing Company: CreateSpace
ISBN: 9781545141748
43PGS
Written for Children
Cover Design by Pretty Good Printmaking
This is by far and away, the best children’s book that I have read on the subject of a child dealing with Chronic Kidney Disease, and all the challenges that come with it. Ms. Baliker takes us inside the life and mind of a child, who goes from being a normal little girl to a desperate kidney patient overnight. Initially, when we first meet Maria, she is leading a pastoral, rural life on her father’s hobby farm. She led a happy life, exploring the woods, collecting stones, feathers and arrowheads. Her days are spent catching butterflies, reading Charlotte’s Web or Nancy Drew books, with her constant companion Teddy, her teddy bear and our narrator. Maria was leading the idyllic life of a young girl.
This all changes when Maria’s little body begins to swell, and she is tired for such a young girl. She is diagnosed after a series of traumatic tests with kidney disease, forcing her to take medication to keep her alive. She is made fun of by her other classmates, openly fears death, even questions her parents’ motives for throwing her, “a big birthday party.” Fortunately, the medicine begins to work, and the swelling goes down.
Miraculously, she begins to lead a semi-normal life again, making friends, attending school, enjoying activities. She was in remission. At the age of 15, she begins a devastating relapse. Now old enough for a kidney transplant, until a donor comes along, she faces dialysis. 6 hours a day, even sicker than before, she tells her brother, Doug, “It’s my whole day. My whole life...I just don’t think I can do this.” She continues, “I won’t get to read any more books. I won’t see my friends any more. No more bikes or football games. Not even a senior prom. No more…no more anything. No more you! I won’t even get to see my nieces and nephews, if I ever have any. I won’t even be able to get married!”
Doug realizes she is frightened. He takes action. Her 21-year-old bigger brother makes a life-saving decision.
This is a wonderful book that understands from a child’s point of view what a diagnosis of kidney disease means and how it affects life. It is truly written by someone who has been there and revisits the anxiety and elation of going from diagnosis to transplant. This is not only a great book for children suffering from kidney disease, but adults as well. It gives an unflinching view of a horrible childhood disease that most adults deal with poorly. The writing that makes this book unique, is that we get that reminder of trauma in childhood that goes above and beyond the normal scary things encountered. Mary Baliker has written a brilliant book about childhood illness, giving an unrelenting vision of pediatric kidney patients. We love little Maria and her extreme courage. Yes, Maria. I hope to be brave like you!
BUY THE BOOK HERE: https://www.amazon.com/Maria-Never-Gives-Up-Brave/dp/1545141746/ref=pd_rhf_cr_p_img_1?_encoding=UTF8&psc=1&refRID=2GA200025NA5JMJH2P1E
o edit.
PKD AWARENESS DAY 2016: MY STORY
How does one normally become aware of Polycystic Kidney Disease? In my case, I became aware through my Father. I’m 62 now. This is about the same age my Dad was when he first told me he had PKD. He had been to the Mayo Clinic for a checkup, and he reported to me that he had “kidney disease.” He went on, “let me put it this way, the doctors said I won’t live to be a hundred.” In the years that followed he became dizzy, had difficulty standing and maintaining his balance. In a very short time, he was on dialysis. By 1983, he was gone. He spent the last month of his life in the hospital, St. Margaret’s in Hammond, Indiana. He died a slow, lingering death of congestive heart failure and uremic poisoning all secondary to PKD. I learned that as a child, his entire family had been quarantined as a result of small pox, and almost all of my family on my Father’s side had died as a result of what was originally termed as “environmental PKD,” or due to a scarring of the kidneys that later turned into cysts and infection.
One thing about this, I had a cousin Rich, who did not live with this group, and he too died from PKD related causes. He was in his 30’s when he died, he had just married and this came as quite a shock to the rest of us. They termed this, “Childhood PKD” and told the rest of us it was an aberration.
When my Dad told of us diagnosis, I was in law school, when he died I was already working my second attorney job. Very shortly after his death, I went into the hospital in Valparaiso, Indiana, what was then called Porter Memorial, with chest pains. My PCP told me that my cysts were so large they could be seen on a plain x-ray. So much for the environmental/childhood theories. To say this came as a blow, was an understatement. I watch my Dad die and I felt my future was cast in cement.
I did a lot of things wrong after that, but more importantly were the things I did that were right. I not had the local nephrologists my Dad had in NW Indiana, but also retained nephrologists at IU Health at Indiana University. I was put on a renal diet right way. I was given high blood pressure medication. I saw them every six months, where they did a urine test and a blood test on every visit. I was able to put dialysis for a long time, over 30 years. I was horribly frightened of dialysis because of what I saw when I sat with my Dad. But because I had followed medical advice and had excellent care, my dialysis was not unreasonably difficult.
Others were not so lucky. I became a kidney advocate and this is what I plan to do the rest of my life. I like helping others , especially my friends with PKD!
On April 27, 2016, I became the first Myers ever to have a kidney transplant at my lucky place, IU Health in Indianapolis.
For PKD Awareness Day, I want to remind everyone to get tested. It is a simple and inexpensive blood and urine test that takes no time at all, but can make a world of difference. If PKD runs in your family, like mine, don’t hesitate to get checked out. Be PKD aware!
How does one normally become aware of Polycystic Kidney Disease? In my case, I became aware through my Father. I’m 62 now. This is about the same age my Dad was when he first told me he had PKD. He had been to the Mayo Clinic for a checkup, and he reported to me that he had “kidney disease.” He went on, “let me put it this way, the doctors said I won’t live to be a hundred.” In the years that followed he became dizzy, had difficulty standing and maintaining his balance. In a very short time, he was on dialysis. By 1983, he was gone. He spent the last month of his life in the hospital, St. Margaret’s in Hammond, Indiana. He died a slow, lingering death of congestive heart failure and uremic poisoning all secondary to PKD. I learned that as a child, his entire family had been quarantined as a result of small pox, and almost all of my family on my Father’s side had died as a result of what was originally termed as “environmental PKD,” or due to a scarring of the kidneys that later turned into cysts and infection.
One thing about this, I had a cousin Rich, who did not live with this group, and he too died from PKD related causes. He was in his 30’s when he died, he had just married and this came as quite a shock to the rest of us. They termed this, “Childhood PKD” and told the rest of us it was an aberration.
When my Dad told of us diagnosis, I was in law school, when he died I was already working my second attorney job. Very shortly after his death, I went into the hospital in Valparaiso, Indiana, what was then called Porter Memorial, with chest pains. My PCP told me that my cysts were so large they could be seen on a plain x-ray. So much for the environmental/childhood theories. To say this came as a blow, was an understatement. I watch my Dad die and I felt my future was cast in cement.
I did a lot of things wrong after that, but more importantly were the things I did that were right. I not had the local nephrologists my Dad had in NW Indiana, but also retained nephrologists at IU Health at Indiana University. I was put on a renal diet right way. I was given high blood pressure medication. I saw them every six months, where they did a urine test and a blood test on every visit. I was able to put dialysis for a long time, over 30 years. I was horribly frightened of dialysis because of what I saw when I sat with my Dad. But because I had followed medical advice and had excellent care, my dialysis was not unreasonably difficult.
Others were not so lucky. I became a kidney advocate and this is what I plan to do the rest of my life. I like helping others , especially my friends with PKD!
On April 27, 2016, I became the first Myers ever to have a kidney transplant at my lucky place, IU Health in Indianapolis.
For PKD Awareness Day, I want to remind everyone to get tested. It is a simple and inexpensive blood and urine test that takes no time at all, but can make a world of difference. If PKD runs in your family, like mine, don’t hesitate to get checked out. Be PKD aware!
KidneyWorks Conference Concludes in D.C.
Labor Force Initiative Targets Kidney Patients
Patients, Federal Officials, Health and Workforce Data Experts Convene for KIDNEYWORKS™
WASHINGTON, D.C. The KidneyWorks™ Initiative, a new research and policy collaboration aimed at helping Americans with Chronic Kidney Disease (CKD) who are not on dialysis maintain their jobs and slow their disease, was rolled out recently on Capitol Hill by the American Association of Kidney Patients (AAKP) and the Medical Education Institute (MEI). An estimated 10% of U.S. adults, more than 20 million Americans, have some degree of CKD, ranging from stages CKD I to CKD V (kidney failure). Millions of Americans afflicted with the earliest stages of kidney disease are currently in the labor force and successfully hold jobs long before the need for renal replacement therapy (dialysis or a kidney transplant) at CKD stage V.
AAKP and MEI jointly convened the KidneyWorks™ Initiative’s Consensus Conference at the Hall of States Building in Washington D.C. with over thirty national experts in the fields of patient engagement, renal care, health and insurance data mining, labor force data mining, Federal reimbursement, physical exercise, renal social work and vocational rehabilitation. During the conference, stakeholders identified issues and barriers that interfere with patient goals to stay healthy, remain engaged, continue working and paying taxes. Expert participants formulated strategies and recommendations to help patients slow progression of their disease, successfully manage symptoms, maintain incomes and standards of living and preserve their quality of life.
The results of the KidneyWorks™ Initiative’s Consensus Conference will be a white paper to be issued in late 2016 that will present the experts’ findings and recommendations for Federal, non-profit and private sector policies and programs that will encourage patients to maintain their employment while they manage their illness. AAKP and MEI plan to present the white paper recommendations to the United States Congress as well to relevant representatives of the Presidential Transition Team for the President-Elect. The Consensus Conference was the first of several collaborative actions between AAKP and MEI.
“Chronic kidney disease poses great challenges to patients who need and want to work, but they are not insurmountable and no patient should be encouraged to prematurely leave their job, put their aspirations on hold and go on disability unless it is an absolute medical necessity,” stated Paul T. Conway, president of the American Association of Kidney Patients. Conway is a former Chief of Staff of the U.S. Department of Labor and kidney transplant recipient who has managed kidney disease for over thirty-five years.
“KidneyWorks has assembled an exceptionally talented national ‘dream team’ committed to identifying misperceptions and artificial barriers that keep kidney patients from staying engaged in their careers, and developing practical recommendations that will help us effect change and keep people working despite CKD,” stated Dori Schatell, MS, Executive Director of the Wisconsin-based MEI.
Working with kidney disease can be challenging and symptoms at earlier stages can include fatigue, headaches, nausea, muscle cramps, shortness of breath, and problems sleeping. All of these can interfere with work, but symptoms are often treatable. Having a job that provides an employer group health plan or enough income to purchase a private health plan will help ensure that CKD patients who desperately need preventive care will receive it—and will help them stay active and productive.
Participant experts represented some of the most influential Federal, professional and non-profit and private sector stakeholders directly involved in long-term kidney patient health and employment-related issues.
Stakeholders represented at the Consensus Conference included:
Patient and Professional Organization:
American Association of Kidney Patients (AAKP)
American Health Quality Association (AHQA)
American Society of Nephrology (ASN)
Kidney Health Initiative (KHI) – (a collaborative of U.S. Food and Drug Administration and ASN)
Medical Education Institute (MEI)
NRAA
Renal Physicians Association (RPA)
Federal Government:
Centers for Medicare and Medicaid Assistance (CMS), U.S. Department of Health and Human Services
Health Resources and Services Administration (HRSA), U.S. Department of Health and Human Services
National Kidney Disease Education Program (NKDEP) within the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH)
Office of Disability Employment Policy (ODEP), U.S. Department of Labor
Private Sector:
Baxter International
CiCoach
DaVita, Inc.
Dialysis Clinic, Inc.
Fresenius Kidney Care
Northwest Kidney Centers
Renalogic
At the event, AAKP and MEI expressed their appreciation to the sponsors of the KidneyWorks™ Initiative’s Consensus Conference including Baxter International Inc.; DaVita, Inc.; Dialysis Clinic, Inc.; Fresenius Kidney Care; National Renal Administrators Association; Northwest Kidney Centers; Renal Medicine Foundation; and the former ESRD New York Network.
###
Founded in 1969, AAKP is the largest and oldest independent kidney patient organization in America and is governed by a patient-majority Board of Directors. AAKP conducts national education programs designed to better inform kidney patients, care-givers and policy-makers about the true impacts of kidney disease, prevention efforts and treatment methods. AAKP executes a national advocacy strategy, in conjunction with allied kidney organizations, designed to insert the patient voice into proposed policies, research efforts and care deliberations before the Executive Branch and the U.S. Congress so that patient interests are fully represented.
Founded in 1993, MEI is a national 501(c)(3) non-profit organization dedicated to helping people with chronic diseases learn to manage and improve their health, and a focus on chronic kidney disease. MEI fulfills its mission by conducting research, developing evidence-based educational materials for consumers and health professionals, and advocating for patient-centered policies. Tax-deductible contributions can be made through MEI's website, www.meiresearch.org.
Patients, Federal Officials, Health and Workforce Data Experts Convene for KIDNEYWORKS™
WASHINGTON, D.C. The KidneyWorks™ Initiative, a new research and policy collaboration aimed at helping Americans with Chronic Kidney Disease (CKD) who are not on dialysis maintain their jobs and slow their disease, was rolled out recently on Capitol Hill by the American Association of Kidney Patients (AAKP) and the Medical Education Institute (MEI). An estimated 10% of U.S. adults, more than 20 million Americans, have some degree of CKD, ranging from stages CKD I to CKD V (kidney failure). Millions of Americans afflicted with the earliest stages of kidney disease are currently in the labor force and successfully hold jobs long before the need for renal replacement therapy (dialysis or a kidney transplant) at CKD stage V.
AAKP and MEI jointly convened the KidneyWorks™ Initiative’s Consensus Conference at the Hall of States Building in Washington D.C. with over thirty national experts in the fields of patient engagement, renal care, health and insurance data mining, labor force data mining, Federal reimbursement, physical exercise, renal social work and vocational rehabilitation. During the conference, stakeholders identified issues and barriers that interfere with patient goals to stay healthy, remain engaged, continue working and paying taxes. Expert participants formulated strategies and recommendations to help patients slow progression of their disease, successfully manage symptoms, maintain incomes and standards of living and preserve their quality of life.
The results of the KidneyWorks™ Initiative’s Consensus Conference will be a white paper to be issued in late 2016 that will present the experts’ findings and recommendations for Federal, non-profit and private sector policies and programs that will encourage patients to maintain their employment while they manage their illness. AAKP and MEI plan to present the white paper recommendations to the United States Congress as well to relevant representatives of the Presidential Transition Team for the President-Elect. The Consensus Conference was the first of several collaborative actions between AAKP and MEI.
“Chronic kidney disease poses great challenges to patients who need and want to work, but they are not insurmountable and no patient should be encouraged to prematurely leave their job, put their aspirations on hold and go on disability unless it is an absolute medical necessity,” stated Paul T. Conway, president of the American Association of Kidney Patients. Conway is a former Chief of Staff of the U.S. Department of Labor and kidney transplant recipient who has managed kidney disease for over thirty-five years.
“KidneyWorks has assembled an exceptionally talented national ‘dream team’ committed to identifying misperceptions and artificial barriers that keep kidney patients from staying engaged in their careers, and developing practical recommendations that will help us effect change and keep people working despite CKD,” stated Dori Schatell, MS, Executive Director of the Wisconsin-based MEI.
Working with kidney disease can be challenging and symptoms at earlier stages can include fatigue, headaches, nausea, muscle cramps, shortness of breath, and problems sleeping. All of these can interfere with work, but symptoms are often treatable. Having a job that provides an employer group health plan or enough income to purchase a private health plan will help ensure that CKD patients who desperately need preventive care will receive it—and will help them stay active and productive.
Participant experts represented some of the most influential Federal, professional and non-profit and private sector stakeholders directly involved in long-term kidney patient health and employment-related issues.
Stakeholders represented at the Consensus Conference included:
Patient and Professional Organization:
American Association of Kidney Patients (AAKP)
American Health Quality Association (AHQA)
American Society of Nephrology (ASN)
Kidney Health Initiative (KHI) – (a collaborative of U.S. Food and Drug Administration and ASN)
Medical Education Institute (MEI)
NRAA
Renal Physicians Association (RPA)
Federal Government:
Centers for Medicare and Medicaid Assistance (CMS), U.S. Department of Health and Human Services
Health Resources and Services Administration (HRSA), U.S. Department of Health and Human Services
National Kidney Disease Education Program (NKDEP) within the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH)
Office of Disability Employment Policy (ODEP), U.S. Department of Labor
Private Sector:
Baxter International
CiCoach
DaVita, Inc.
Dialysis Clinic, Inc.
Fresenius Kidney Care
Northwest Kidney Centers
Renalogic
At the event, AAKP and MEI expressed their appreciation to the sponsors of the KidneyWorks™ Initiative’s Consensus Conference including Baxter International Inc.; DaVita, Inc.; Dialysis Clinic, Inc.; Fresenius Kidney Care; National Renal Administrators Association; Northwest Kidney Centers; Renal Medicine Foundation; and the former ESRD New York Network.
###
Founded in 1969, AAKP is the largest and oldest independent kidney patient organization in America and is governed by a patient-majority Board of Directors. AAKP conducts national education programs designed to better inform kidney patients, care-givers and policy-makers about the true impacts of kidney disease, prevention efforts and treatment methods. AAKP executes a national advocacy strategy, in conjunction with allied kidney organizations, designed to insert the patient voice into proposed policies, research efforts and care deliberations before the Executive Branch and the U.S. Congress so that patient interests are fully represented.
Founded in 1993, MEI is a national 501(c)(3) non-profit organization dedicated to helping people with chronic diseases learn to manage and improve their health, and a focus on chronic kidney disease. MEI fulfills its mission by conducting research, developing evidence-based educational materials for consumers and health professionals, and advocating for patient-centered policies. Tax-deductible contributions can be made through MEI's website, www.meiresearch.org.
WHY WE NEED TO BE MORE ACTIVE ON SOCIAL MEDIA
WHY WE NEED TO BE ACTIVE ON SOCIAL MEDIAPosted on May 9, 2016 by nkf _advocacy
By Jim Myers, Kidney Advocacy Committee Liaison
WHY WE NEED TO BE ACTIVE ON SOCIAL MEDIA
Social media is a fun and interesting way to communicate. It is also a great tool for raising awareness for kidney disease! Why use social media? It is one of the most authentic ways to communicate to your legislators. Additionally, it is also a great way to amplify your message. During an average 8 hour day at a kidney table, I might see 50 people. Over the same period of time on social media, I reach over 10,000 people, sometimes as many as 100,000 persons in a week!
USING SOCIAL MEDIA TO AFFECT PUBLIC POLICY
Most elected officials use multiple social media accounts, including Facebook, Instagram, LinkedIn, and Twitter. The form and content of communication is only limited by your imagination. Many kidney organizations have public policy action pages to help you advocate and shape public policy, like this one from the National Kidney Foundation, that also allow you to “tell your story” to your elected officials.
You can use social media to:
Blogs are also a great tool to express your point of view or share an idea. You can use them to create original content, add photos and video, or host an opinion poll. Free, quick and easy, blogs platforms, such as WordPress and Tumblr, can give you instant visibility. Make sure you ask all your friends to like your blog and Facebook pages, and comments, and to share them. You can also share the page with general public, on other kidney pages, and in kidney groups to raise your circulation.
By establishing constant contact with your elected officials and their staff, you can become a trusted source of information related to kidney issues and legislation. This trusted relationship can help you get attention when sharing content (I like to send my government officials links to posts on the NKF’s Advocacy in Action blog) or when you ask them to co-sponsor a bill.
Using other media to promote a bill or issue
There are several websites that help you prepare, solicit, and transmit petitions that are designed to promote a kidney disease bill or important kidney issue. They include:
Questions? Contact me at [email protected] or www.facebook.com/jamesmyers3.
About Jim
James Myers is the Statewide Advocate for the National Kidney Foundation for the State of Indiana. He is a member of the Kidney Advocacy Committee. He is the inaugural winner of the 2016 Social Media Advocate Award for the American Association of Kidney Patients. On April 27, 2016, he received a kidney transplant! http://www.chicagotribune.com/suburbs/post-tribune/opinion/ct-ptb-davich-kidney-donor-found-st-0508-20160506-story.html
By Jim Myers, Kidney Advocacy Committee Liaison
WHY WE NEED TO BE ACTIVE ON SOCIAL MEDIA
Social media is a fun and interesting way to communicate. It is also a great tool for raising awareness for kidney disease! Why use social media? It is one of the most authentic ways to communicate to your legislators. Additionally, it is also a great way to amplify your message. During an average 8 hour day at a kidney table, I might see 50 people. Over the same period of time on social media, I reach over 10,000 people, sometimes as many as 100,000 persons in a week!
USING SOCIAL MEDIA TO AFFECT PUBLIC POLICY
Most elected officials use multiple social media accounts, including Facebook, Instagram, LinkedIn, and Twitter. The form and content of communication is only limited by your imagination. Many kidney organizations have public policy action pages to help you advocate and shape public policy, like this one from the National Kidney Foundation, that also allow you to “tell your story” to your elected officials.
You can use social media to:
- Inform, discuss, update, and influence others about kidney disease policy and legislation
- Develop a collective voice and collaborate
- Share knowledge about kidney disease
- Influence the behavior and decisions of your elected officials
- Meetings in Washington, DC
- Local (District) meetings and town halls
- Dialysis clinic visits
- Local NKF events, like Kidney Walks or KEEP Healthy screenings
Blogs are also a great tool to express your point of view or share an idea. You can use them to create original content, add photos and video, or host an opinion poll. Free, quick and easy, blogs platforms, such as WordPress and Tumblr, can give you instant visibility. Make sure you ask all your friends to like your blog and Facebook pages, and comments, and to share them. You can also share the page with general public, on other kidney pages, and in kidney groups to raise your circulation.
By establishing constant contact with your elected officials and their staff, you can become a trusted source of information related to kidney issues and legislation. This trusted relationship can help you get attention when sharing content (I like to send my government officials links to posts on the NKF’s Advocacy in Action blog) or when you ask them to co-sponsor a bill.
Using other media to promote a bill or issue
There are several websites that help you prepare, solicit, and transmit petitions that are designed to promote a kidney disease bill or important kidney issue. They include:
- Org- Petition supporting kidney donors’ rights
- I Petitions.com
- Social Bright – a directory of petition sites
- We the People – petition the Whitehouse
Questions? Contact me at [email protected] or www.facebook.com/jamesmyers3.
About Jim
James Myers is the Statewide Advocate for the National Kidney Foundation for the State of Indiana. He is a member of the Kidney Advocacy Committee. He is the inaugural winner of the 2016 Social Media Advocate Award for the American Association of Kidney Patients. On April 27, 2016, he received a kidney transplant! http://www.chicagotribune.com/suburbs/post-tribune/opinion/ct-ptb-davich-kidney-donor-found-st-0508-20160506-story.html
My good friend, Josh Morrison, wrote this article supporting kidney donors. It is worth a read. Please check out his web site, Waitlist Zero.
https://www.washingtonpost.com/news/in-theory/wp/2016/01/01/its-time-to-treat-organ-donors-with-the-respect-they-deserve/?postshare=1221451933778872&tid=ss_fb IT’S TIME TO TREAT ORGAN DONORS WITH THE RESPECT THEY DESERVE BY JOSH MORRISON Josh Morrison is a kidney donor and the executive director of WaitList Zero, a nonprofit devoted to representing living donors and supporting living donation. Each year in America, 35,000 people are added to the kidney transplant waiting list — 20,000 more than the number of people who actually receive one. There are more Americans who fail to receive a lifesaving transplant than there are homicides committed in the United States annually, yet there is more news coverage of gun violence in one day than there is of transplants in an entire year. The media attention that kidney transplant does attract often revolves around a tired debate about incentives framed by two unacceptable responses: Should we treat people like human vending machines and purchase their organs with cash? Or should we do nothing, repeat the words “pure altruism,” and let thousands of people continue to die each year? [Other perspectives: Will lab-grown kidneys fix our transplant waiting lists?] There’s a better way: a path of transplant support that treats organ donation like a public service and honors donors like public servants. That means giving donors lifetime health insurance to offset the risks of donation; providing them with annual research stipends to enable long-term follow-up; and paying for lost wages, travel and childcare expenses when they take time off to donate. It means making sure all patients and their families receive specialized education about transplants. The goal of transplant support is to make kidney transplants easy to ask for and easy to give. Right now, asking for a transplant is hard. As many as 80,000 patients who are eligible for a transplant are not even listed. Seventy-five percent of kidney recipients feel inadequately educated about live donation. Imagine asking a friend to borrow money; now imagine asking for an organ. It’s not an easy conversation, which is why education and ensuring donor health is so important. The risks of donation are manageable but real, and while scientific understanding continues to improve, it is still imperfect. Kidney donors accept these risks individually. But because their sacrifices aid us all, they deserve the best health care possible. They deserve lifetime health insurance and lifetime follow-up. Yet they currently receive no health-care guarantee — just two years of required follow-up by transplant centers, and no coverage for lost wages, travel and childcare expenses. Some say that kidney donation needs to be a “pure gift,” meaning donors should not receive different treatment for having donated. But by and large, these people have never given or received an organ. Treating donation as an isolated act of individual generosity imposes an enormous burden on recipients, who may unjustly feel guilty that they can never repay their donors’ generosity. Donors are proud to have been able to save the lives, and studies show that more than 19 out of 20 are satisfied with their decision. Donation is an act of public service that society should support and honor with tangible commitments, and donors merit the same level of respect given to police officers, firefighters, soldiers and teachers. But so far our society has displayed a thankless response in the face of those who give of themselves to save another’s life. Donors deserve better treatment than they have so far received. So why has such a crucial issue been given such short shrift? It’s not because the problem has been solved: 2014 saw the lowest number of living kidney donors — 5,537 — since 2000, when 50,000 patients were on the waiting list. Today, more than 100,000 are waiting, and the list grows each year. Transplant rates have stagnated, leaving more and more patients to perish on dialysis. It’s not because the cost is prohibitive: a transplant saves Medicare hundreds of thousands of dollars per patient and saves private insurers even more. Ending the kidney shortage would save health-care providers approximately $6 billion per year. And it’s not because the organ transplant shortage is a problem without a solution. There are solutions; we’re just not implementing them. If 1 in 10,000 Americans donated a kidney each year, there would be no transplant shortage. Supporting donation — making it better for the donor and easier for the recipient — will dramatically expand access to lifesaving organs. Right now, America is not providing that support. http://waitlistzero.org/ |
PAYING THROUGH THE NOSE FOR YOUR KIDNEY |
IT'S TIME TO TREAT ORGAN DONORS WITH THE RESPECT THEY DESERVE!
From the NKF:
A recent Avalere Health shows how some Exchange/Marketplace plans are shifting costs of immunosuppressive drugs to patients calling into question how those under age 65 whose Medicare coverage ends 36 months post-transplant will be able to afford their meds.
https://www.kidney.org/news/paying-through-nose-keep-kidney
Paying Through the Nose to Keep a Kidney
New York, NY – New data calls into question how transplant recipients will be able to pay for a lifetime of anti-rejection medications, according to the National Kidney Foundation (NKF).
Research from NKF on drug coverage in 2015 healthcare exchange plans found that plans are charging high cost-sharing for immunosuppressive medications, requiring patients to pay an average of 36 percent of the cost for transplant medications. The data analysis was conducted by Avalere.[1] These higher rates are an indication that healthcare exchange plans are shifting immunosuppressive drug costs to patients. These medications are necessary for patients to prevent transplant rejection.
At the same time, recent data (.ppt) shared during last month’s Organ Procurement and Transplant Network (OPTN) Advisory Committee meeting shows an increase in transplants among younger adults from December 2014 to June 2015.
“We have to ask how patients, especially young transplant recipients, are going to manage the financial burden of maintaining their immunosuppression medications year after year,” said Tonya Saffer, Senior Health Policy Director for the National Kidney Foundation. “Financial burdens shouldn’t prevent someone from getting the medications they need to keep the gift of life.”
Medicare coverage for transplant patients expires 36 months post-transplant. The Affordable Care Act (ACA) has offered broad access to insurance, giving transplant recipients who are under age 65 and not disabled better options to gain insurance coverage after Medicare ends. However, patient cost-sharing for immunosuppressive drugs can be so high on the individual exchange plans that patients have difficulty paying for their medications.
While most silver exchange plans use flat copayments for generic immunosuppressive medication, for any given drug 19-32% of exchange plans are using coinsurance. The average amount of patient coinsurance across generic and brand immunosuppressive drugs is 36% with three plans requiring coinsurance for immunosuppressive drugs up to 60%.
The use of coinsurance typically results in patients paying more for their drugs. There is also a lack of transparency for the dollar amount they will have to pay to fill their prescriptions.
When coinsurance is used, the average patient cost-sharing across all silver exchange plans is 36% of immunosuppressive medications. The portion patients are being required to pay can easily meet the annual out-of-pocket maximum which, in 2015, was $6,600 for patients not receiving a cost-sharing subsidy.
“We don’t want to create a panic among transplant recipients, but we have to educate them and make sure they have a financial plan for their medications,” said Matthew Cooper, MD, Director of Kidney and Pancreas Transplantation at Medstar Georgetown Transplant Institute. “We’ve also seen many patients being switched to generic medications. While this may save money, we need to make sure insurance plans and patients aren’t doing this without consulting their transplant program. Sudden medication changes can affect the health of the patient and the viability of their transplant.”
In 2016, plans will be barred from placing nearly all immunosuppressive drugs on the highest cost-sharing tier after a rule was made by the U.S. Department of Health and Human Services. However, this action may not stop the trend of greater use of coinsurance and higher copayments for organ recipients and others who rely on medications to treat chronic conditions.
“These findings also underscore NKF’s long-standing position on extending Medicare’s coverage of immunosuppressive transplant medications,” Saffer said. “Providing coverage will improve patient safety, decrease the chance of organ rejection, and reduce the number of people who need to go back on dialysis if their transplants fail, which is a costly proposition for our healthcare system.”
The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease. For more information, visit www.kidney.org.
[1] Avalere Health PlanScape®, a proprietary analysis of exchange plan features. This analysis is based on data collected by Managed Markets Insight & Technology, LLC.
Publication DateTuesday, December 15, 2015
A recent Avalere Health shows how some Exchange/Marketplace plans are shifting costs of immunosuppressive drugs to patients calling into question how those under age 65 whose Medicare coverage ends 36 months post-transplant will be able to afford their meds.
https://www.kidney.org/news/paying-through-nose-keep-kidney
Paying Through the Nose to Keep a Kidney
New York, NY – New data calls into question how transplant recipients will be able to pay for a lifetime of anti-rejection medications, according to the National Kidney Foundation (NKF).
Research from NKF on drug coverage in 2015 healthcare exchange plans found that plans are charging high cost-sharing for immunosuppressive medications, requiring patients to pay an average of 36 percent of the cost for transplant medications. The data analysis was conducted by Avalere.[1] These higher rates are an indication that healthcare exchange plans are shifting immunosuppressive drug costs to patients. These medications are necessary for patients to prevent transplant rejection.
At the same time, recent data (.ppt) shared during last month’s Organ Procurement and Transplant Network (OPTN) Advisory Committee meeting shows an increase in transplants among younger adults from December 2014 to June 2015.
“We have to ask how patients, especially young transplant recipients, are going to manage the financial burden of maintaining their immunosuppression medications year after year,” said Tonya Saffer, Senior Health Policy Director for the National Kidney Foundation. “Financial burdens shouldn’t prevent someone from getting the medications they need to keep the gift of life.”
Medicare coverage for transplant patients expires 36 months post-transplant. The Affordable Care Act (ACA) has offered broad access to insurance, giving transplant recipients who are under age 65 and not disabled better options to gain insurance coverage after Medicare ends. However, patient cost-sharing for immunosuppressive drugs can be so high on the individual exchange plans that patients have difficulty paying for their medications.
While most silver exchange plans use flat copayments for generic immunosuppressive medication, for any given drug 19-32% of exchange plans are using coinsurance. The average amount of patient coinsurance across generic and brand immunosuppressive drugs is 36% with three plans requiring coinsurance for immunosuppressive drugs up to 60%.
The use of coinsurance typically results in patients paying more for their drugs. There is also a lack of transparency for the dollar amount they will have to pay to fill their prescriptions.
When coinsurance is used, the average patient cost-sharing across all silver exchange plans is 36% of immunosuppressive medications. The portion patients are being required to pay can easily meet the annual out-of-pocket maximum which, in 2015, was $6,600 for patients not receiving a cost-sharing subsidy.
“We don’t want to create a panic among transplant recipients, but we have to educate them and make sure they have a financial plan for their medications,” said Matthew Cooper, MD, Director of Kidney and Pancreas Transplantation at Medstar Georgetown Transplant Institute. “We’ve also seen many patients being switched to generic medications. While this may save money, we need to make sure insurance plans and patients aren’t doing this without consulting their transplant program. Sudden medication changes can affect the health of the patient and the viability of their transplant.”
In 2016, plans will be barred from placing nearly all immunosuppressive drugs on the highest cost-sharing tier after a rule was made by the U.S. Department of Health and Human Services. However, this action may not stop the trend of greater use of coinsurance and higher copayments for organ recipients and others who rely on medications to treat chronic conditions.
“These findings also underscore NKF’s long-standing position on extending Medicare’s coverage of immunosuppressive transplant medications,” Saffer said. “Providing coverage will improve patient safety, decrease the chance of organ rejection, and reduce the number of people who need to go back on dialysis if their transplants fail, which is a costly proposition for our healthcare system.”
The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease. For more information, visit www.kidney.org.
[1] Avalere Health PlanScape®, a proprietary analysis of exchange plan features. This analysis is based on data collected by Managed Markets Insight & Technology, LLC.
Publication DateTuesday, December 15, 2015
ARE YOU IN DANGER OF LOOSING YOUR ANTI-REJECTION MEDS FOR YOUR KIDNEY?
A television producer is working on a story about Medicare coverage for kidney transplants and immunosuppressive drugs. They are looking to report on the 36 month immunosuppressive coverage limit for kidney transplant patients below the age of 65. They are looking for a Medicare patient who is currently at risk of losing their transplant kidney because of a loss in coverage or a patient who has already lost their kidneys and had to go back on dialysis.
Do you know anyone who is/or has been in this position? If so, contact Jerome Bailey at [email protected] or call 813-400-2394. |
LETTER I REC'D TODAY FROM SEN. DAN COATS ON MEDICARE PART B PREMIUM SPIKE
|
https://www.change.org/p/u-s-congress-congress-act-now-to-prevent-a-drastic-spike-in-medicare-part-b-costs-to-esrd-patients
LETTER I RECIEVED TODAY FROM SEN. DAN COATS ON MEDICARE PART B PREMIUM SPIKE
Posted on October 26, 2015 by kidneystories
LETTER I RECIEVED TODAY ON MEDICARE PART B PREMIUM SPIKE FROM SEN. DAN COATS
Dear James:
Thank you for contacting me regarding premium increases in 2016 for Medicare Part B and the Cost of Living Adjustment (COLA) for Social Security beneficiaries. I appreciate the opportunity to respond.
Medicare is the federal health insurance program for most individuals who are sixty-five and older and for certain disabled persons. Medicare Part B provides coverage for physicians’ services, outpatient services, durable medical equipment, and other services. Part B is financed through a combination of beneficiary premiums and federal revenue.
Many Medicare Part B beneficiaries also receive Social Security benefits. Contrary to popular belief, Congress does not determine annual Social Security COLAs. Social Security COLAs are determined by an economic formula that measures the increase or decrease in the price of goods in the American economy. This formula, the Consumer Price Index for Urban Wage Earners and Clerical Workers (CPI-W), is the sole determining factor of a COLA for Social Security recipients. In 2015, Social Security beneficiaries received a 1.7 percent COLA. However, in 2016 there will be no COLA because the CPI-W decreased.
By law, Medicare Part B premiums, which are deducted automatically from Social Security checks for those who receive Social Security, must cover 25 percent of the projected annual Part B costs. The Social Security Act (SSA) includes a “hold harmless” provision that prevents premium increases should the amount be higher than their Social Security monthly benefit. While this hold harmless provision will prevent Part B increases for about 70 percent of beneficiaries, 30 percent of beneficiaries who are not covered by it must pay the portion that otherwise would have been spread across all beneficiaries.
Each year, the Centers for Medicare and Medicaid Services (CMS) determines the Medicare Part B premiums for the following year. Reports that some beneficiaries will face a steep 2016 premium increase are based on a July 2015 Medicare Trustees report. The Trustees documented an unexpected increase in Part B spending that they estimate would cause premiums to rise. Since there will be no Social Security COLA increase in 2016, the Trustees estimated that the projected standard Medicare Part B premium is expected to increase from $104.90 to $159.30 in 2016 for those not protected under the hold harmless provision. Individuals not protected and thus subject to the increase are: those covered under both Medicare and Medicaid (“dual eligibles”); high income earners already subject to higher premiums; new beneficiaries; and those not collecting Social Security benefits. The law does provide CMS with some discretion in setting premiums, though CMS has not officially announced the 2016 premium amount at this time.
I understand that steep increases in Part B premiums will place a significant burden on those Hoosiers who are not protected by the hold harmless provision. As a member of the Senate Finance Committee, I am closely monitoring the actions of CMS and I am actively engaged in examining responsible options to fix this imminent problem and to address long-term solutions to preserve benefits for current and future beneficiaries.
Thank you again for contacting me, and please do not hesitate to keep in touch on other matters of concern to you.
Sincerely,
Dan Coats
United States Senator
To learn more about the work I’m doing on behalf of Hoosiers, sign up for my newsletter, visit my website, and follow me on Twitter and Facebook.
https://www.change.org/p/u-s-congress-congress-act-now-to-prevent-a-drastic-spike-in-medicare-part-b-costs-to-esrd-patients
My reply:
Senator Coats:
Thank you for your reply of 10/26/2015. I appreciate your thoughtfulness. I am curious what your position is on co-sponsoring, supporting and voting for the fix for this problem, S. 2148? Thank you again for such a prompt reply to my initial inquiry. I hope to see you in Washington, DC in March as part of the celebration for World Kidney Day.
Your friend and fellow Hoosier,
James W. Myers, III
Kidney Advocate
LETTER I RECIEVED TODAY FROM SEN. DAN COATS ON MEDICARE PART B PREMIUM SPIKE
Posted on October 26, 2015 by kidneystories
LETTER I RECIEVED TODAY ON MEDICARE PART B PREMIUM SPIKE FROM SEN. DAN COATS
Dear James:
Thank you for contacting me regarding premium increases in 2016 for Medicare Part B and the Cost of Living Adjustment (COLA) for Social Security beneficiaries. I appreciate the opportunity to respond.
Medicare is the federal health insurance program for most individuals who are sixty-five and older and for certain disabled persons. Medicare Part B provides coverage for physicians’ services, outpatient services, durable medical equipment, and other services. Part B is financed through a combination of beneficiary premiums and federal revenue.
Many Medicare Part B beneficiaries also receive Social Security benefits. Contrary to popular belief, Congress does not determine annual Social Security COLAs. Social Security COLAs are determined by an economic formula that measures the increase or decrease in the price of goods in the American economy. This formula, the Consumer Price Index for Urban Wage Earners and Clerical Workers (CPI-W), is the sole determining factor of a COLA for Social Security recipients. In 2015, Social Security beneficiaries received a 1.7 percent COLA. However, in 2016 there will be no COLA because the CPI-W decreased.
By law, Medicare Part B premiums, which are deducted automatically from Social Security checks for those who receive Social Security, must cover 25 percent of the projected annual Part B costs. The Social Security Act (SSA) includes a “hold harmless” provision that prevents premium increases should the amount be higher than their Social Security monthly benefit. While this hold harmless provision will prevent Part B increases for about 70 percent of beneficiaries, 30 percent of beneficiaries who are not covered by it must pay the portion that otherwise would have been spread across all beneficiaries.
Each year, the Centers for Medicare and Medicaid Services (CMS) determines the Medicare Part B premiums for the following year. Reports that some beneficiaries will face a steep 2016 premium increase are based on a July 2015 Medicare Trustees report. The Trustees documented an unexpected increase in Part B spending that they estimate would cause premiums to rise. Since there will be no Social Security COLA increase in 2016, the Trustees estimated that the projected standard Medicare Part B premium is expected to increase from $104.90 to $159.30 in 2016 for those not protected under the hold harmless provision. Individuals not protected and thus subject to the increase are: those covered under both Medicare and Medicaid (“dual eligibles”); high income earners already subject to higher premiums; new beneficiaries; and those not collecting Social Security benefits. The law does provide CMS with some discretion in setting premiums, though CMS has not officially announced the 2016 premium amount at this time.
I understand that steep increases in Part B premiums will place a significant burden on those Hoosiers who are not protected by the hold harmless provision. As a member of the Senate Finance Committee, I am closely monitoring the actions of CMS and I am actively engaged in examining responsible options to fix this imminent problem and to address long-term solutions to preserve benefits for current and future beneficiaries.
Thank you again for contacting me, and please do not hesitate to keep in touch on other matters of concern to you.
Sincerely,
Dan Coats
United States Senator
To learn more about the work I’m doing on behalf of Hoosiers, sign up for my newsletter, visit my website, and follow me on Twitter and Facebook.
https://www.change.org/p/u-s-congress-congress-act-now-to-prevent-a-drastic-spike-in-medicare-part-b-costs-to-esrd-patients
My reply:
Senator Coats:
Thank you for your reply of 10/26/2015. I appreciate your thoughtfulness. I am curious what your position is on co-sponsoring, supporting and voting for the fix for this problem, S. 2148? Thank you again for such a prompt reply to my initial inquiry. I hope to see you in Washington, DC in March as part of the celebration for World Kidney Day.
Your friend and fellow Hoosier,
James W. Myers, III
Kidney Advocate
PETITION PROTESTING SUBSTANTIAL INCREASES IN MEDICARE PART B PREMIUMS AND LETTER FROM SENATOR JOE DONNELLY
https://www.change.org/p/u-s-congress-congress-act-now-to-prevent-a-drastic-spike-in-medicare-part-b-costs-to-esrd-patients
LETTER I REC'D FROM SENATOR JOE DONNELLY TODAY October 20, 2015 Dear Mr. Myers, Thank you for taking the time to contact me with your concerns about potential Medicare Part B premium increases for certain beneficiaries. Like you, I believe seniors on a fixed income should not be faced with unreasonable premium increases. Most seniors enrolled in Medicare Part B are expected to pay a monthly premium, which covers about 25 percent of the cost of the services provided under that section. Monthly Part B premiums—which help pay for physician services, outpatient care, and durable medical equipment—are automatically deducted from beneficiaries' monthly Social Security payments. In years that monthly Social Security benefits are not increased, some seniors may face an increase in Part B premiums to make up for the growing cost of health care services. Most beneficiaries are protected by a "hold harmless" rule, which prevents increases in Part B premiums that exceed the dollar amount of the increase in their Social Security checks. The hold harmless rule protects approximately 70 percent of Part B participants, meaning their Social Security payments are not impacted. However, the remaining 30 percent of beneficiaries could shoulder the entire beneficiary share of the increase in Part B costs. This means some Part B beneficiaries could see their monthly premium increase by $50 or more. In addition, the Part B deductible for all beneficiaries will increase from $147 to $223. The beneficiaries who are not protected by the hold harmless rule include: •Low-income beneficiaries whose Part B premiums are paid by the Medicaid program; •High-income beneficiaries who are subject to income-related Part B premiums; •Those whose Medicare premiums are not deducted from Social Security benefits; and •New enrollees in 2016 To address this issue, S. 2148, the Protecting Medicare Beneficiaries Act, was introduced on October 7, 2015. If enacted into law, this legislation would prevent premium increases for 15 million beneficiaries and reduce the Part B deductible for all Medicare beneficiaries. The Protecting Medicare Beneficiaries Act is pending before the Senate Committee on Finance. Should this legislation come before the Senate for a vote, I will be sure to keep your thoughts in mind. It is a privilege to represent you and all Hoosiers in the Senate. Your continued correspondence is welcome and helps me to better represent our state. I encourage you to write, call, or email if my office can ever be of assistance. You can also check out my Facebook page and follow me on Twitter by visiting my website. Sincerely, Joe Donnelly U.S. Senator |
KIDNEY STORIES: KEVIN NEEDS A KIDNEY
Kevin is in need of a kidney. He is O blood
type.
In June 2012, at Whistler BC, Kevin became the first ever
participant and overcomer of the Tough Mudder WHILE ON DIALYSIS. Kevin completed
this intense course to bring awareness for his own need of a kidney, but also
for the thousands of others across canada who are on the waitlist for a
life-saving organ.
His greatest accomplishment is, however..., being a Dad. His daughter Julia just wants her daddy
back.
Kevin works hard to stay positive, to bring positivity to this
life and to those around him. Are the person who can give him back his life?
Contact St. Paul's Hospital if you think you might be a match for
Kevin.
Tel: (604) 806-9027
Toll free: 1-877-922-9822
Email:
[email protected]
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KIDNEY STORIES: A KIDNEY FOR LUCY
Hello. My name is Lucy. I am 34 years old, and I desperately need a
kidney. The first question people ask is why am I in renal failure at such a
young age. No, I'm not diabetic nor did I do anything to harm my kidneys. I was
born with an auto-immune disease called IgA Nephropathy that destroyed my
kidneys. I do peritoneal dialysis every night for nine hours with a machine.
Sadly, the machine weakens
my heart a little more every night. If it gets too weak, then I'm not as good as
a candidate for a kidney transplant.
What I desperately need is a
kidney. I don't have any family donors. I'm an only child, and much of family is
much older and not in good enough health for the transplant. I also have type O
blood, which is making it harder to find a donor. I feel horrible for searching
in a way, like I'm begging for organs, but I really just want a life beyond
this dialysis machine. I want to go back to teaching. I want to travel. I just
want a life.
Thanks for reading and have a lovely day.
Hello
Ms. Stacy,
I am emailing you because I received an email from the UK
Hospital stating that you were interested in checking up on your transplant
status on the kidney transplant waitlist. You currently have 445 days on the
waitlist and you are listed active. The average wait time that blood type O
recipients tend to wait is between 730 – 915 days on the kidney transplant
waitlist. I hope this helps with your question, and please call me at (859)
323-1152 for any questions or concerns. Hope you are doing well and hope to
call you in soon for that kidney transplant.
Isaac Payne RN,
CCTC
Kidney/Pancreas Transplant Coordinator
University of
Kentucky Transplant Center
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KIDNEY STORIES: NEW BLOG
ARE DIALYSIS PATIENTS REFUSING TO GET TRANSPLANTS BECAUSE OF THE
COSTS OF ANTI-REJECTION MEDICATIONS?
600,000 of American citizens suffer from ESRD and kidney failure. This leaves you with 3 choices: (1) dialysis; (2) a kidney transplant
or (3) death. Kidney transplant
recipients must take immunosuppressive drugs for the life of their transplant,
or they risk losing their new organ.
Medicare pays for the transplant and immunosuppressive drugs for 36
months post transplant, but coverage of these critical medications stops unless
the beneficiary is Medicare-aged(65) or Medicare-disabled.
The Medicare End Stage Renal Disease (ESRD) program pays for dialysis or
transplantation for over 600,000 kidney disease patients every year, regardless
of age, and has saved millions of lives in the four decades since its
enactment. After a transplant,
recipients must take immunosuppressive drugs every day for the life of the
transplant; failure to do so significantly increases the risk of organ
rejection. Kidney recipients, who
qualify for Medicare based on their ESRD, rather than on age or other
disability, lose Medicare coverage 36 months after the transplant.
However, if they remain on dialysis, they have lifetime Medicare
eligibility. Transplant recipients
often have difficulty finding other coverage for their immunosuppressive drugs
after Medicare coverage ends.
Medicare spends an average of $86,316 per year for an individual
who is on dialysis and $124,643 during the first year of a kidney
transplant. However, after the
year of transplant, the cost is much lower at $24,612 for an individual with a
functioning kidney transplant. If
the transplant fails, the patient returns to dialysis or receives another
transplant, each covered again by Medicare.
Extending immunosuppressive coverage beyond the 36-month
post-transplant limit would improve outcomes and enable more kidney patients who
lack adequate insurance to consider transplantation.
Most transplant recipients also have a higher quality of life, and are
more likely to return to work than dialysis
patients.
Currently, there is a bill pending, S. 323, “The Comprehensive
Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2013,”
would extend Medicare Part B coverage for kidney transplant recipients for the
purpose of immunosuppressive drugs only.
All other Medicare coverage would end 36 months after the transplant.
Beneficiaries would be responsible for the appropriate portion of the Part B
premium, as well as applicable deductible and coinsurance requirements. For
patients who have another form of health insurance, Medicare would be the
secondary payer. The bill also
requires that group health plans currently providing coverage of
immunosuppressive drugs for kidney transplant recipients maintain this
coverage. There is a corresponding
bill in the House, H.R. 1428: Comprehensive Immunosuppressive Drug Coverage for
Kidney Transplant Patients Act of 2013.
The Senate version of the bill has been passed out of committee.
Last week, I read a blog I found to be disturbing.
Coupled with that, I received a note from one of my friends.
The note and the blog indicated that people who were unable to
age/disability qualify for Medicare were refusing transplants due to the high
costs of the anti-rejection medications.
According to Cameron Field and Kidney Buzz, of
the 275,000 people are on dialysis in the United States, only 93,000 individuals
choose to be listed on the US Kidney Transplant Waiting List. Two thirds of
dialysis patients are not listed, while only one third had chosen to list. Does the prospect of Medicare coverage
for only 36 months and then the average monthly cost of approximately
$2100/month cause people to decline the transplant option?
Of course, there may be others reasons to decline; it requires a surgery,
the risk of infection, the risk of rejection even if you take the meds, the
necessary follow up, and pain, but sources are now saying that it may be
possible that up to 34% of dialysis patients are declining transplants due to
the cost of anti-rejection meds.
The Dialysis Patient Citizens conducted a survey last year on
this issue. 29% said they had
other medical conditions. 26% said they were too old. 7% said they were
overweight. 6% said their doctors didn’t recommend it.
5% said they were satisfied with dialysis. However, 6% cited financial
reasons generally, 4% said they couldn’t afford the surgery, and 2.5% said they
couldn’t afford the medications. 17% cited personal reasons. Who knows how many
in that 17% didn’t want to disclose financial hardship. So according to the
DPC’s data, it between 13% and 30% that aren’t on the list due to financial
reasons.
In addition of the 13,000 transplants performed last year and
6,000 of those were from living donors. There are also significant financial
barriers to donors, like the wages they lose while in the hospital and travel to
the transplant center. Some states will provide reimbursement in the form of tax
deductions for these costs. The federal government also provides some grants,
but the program is woefully underfunded.
The DPC estimates that cost to reimburse someone’s lost wages is about
$6k for one surgery. When you look
at in in terms of Medicare paying for the transplant surgery ($100,000) and for
the cost of anti-rejection drugs ($24,000/yr), travel and lost wages costs are
minimal.
If 30% of the people taking dialysis refuse to be listed due to
the costs of transplant autoimmune medications, then we are talking about
approximately 100,000 people. Your
life expectancy on dialysis on average is said to be 3-5 years.
Your life expectancy for a transplant, from a living donor functions, on
average, 12 to 20 years, while a deceased donor kidney is somewhat less, 8 to 12
years. If you receive a kidney transplant before you are required to begin
dialysis then you will live 10 to 15 years longer than if you stayed on
dialysis, on average. So, even though a kidney transplant involves major surgery
and requires some risk, in comparison it offers you a longer life. Most patients
who have been on dialysis before their transplant report having more energy,
less restricted diet, and less complications with a kidney transplant than if
they had stayed on dialysis.
Is this 13%-30% reluctance of dialysis patients to obtain a
kidney transplant a substantial argument in favor of lifetime protection for
anti-rejection meds? Maybe it
should be.
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KIDNEY STORIES
KIDNEY STORIES : NEW BLOG
THE CENTER FOR DISEASE SERVICES RECENT PROPOSED CUTS TO FUNDING FOR MEDICARE
DIALYSIS PATIENTS AND THE MYTH OF SISYPHUS
I was on a conference
call this week with the executives from the Dialysis Patient Citizens where we
were discussing the CMS’ proposed cuts of payments to dialysis centers and
Medicare patients. The speaker mad a very good point that as advocates we
must remain consistent. By consistent, he meant that we must be prepared
to fight against this issue not just for now, for maybe for a while. That
sometimes legislation comes about just not from adjustments made to hot button
issues, but from a persistent effort to make your point. You fight not
just because it is trendy, but you fight because it is the right thing to
do. A fight is more than one round, it is many rounds; it is not a sprint,
sometimes it is a marathon. Much like baseball, legislation is 162 games;
it is a long season. You must give your best effort, because in the long
run there is only one question that really needs to be asked: what is the
right thing to do here? It is not a political question; it is not just an
ethical question. It is a moral question. It is a lot like corporate
responsibility; you look at all sides of an issue and all the viewpoints of the
players, then you do what is best for everyone. I have asked myself this
question and the answer is very clear to me. The best thing to do for all
concerned is to protest, resist and outright fight against such severe cuts to
Medicare dialysis patients.
What does Sisyphus
have to do with cuts to dialysis centers and Medicare patients? In
Greek mythology Sisyphus was a king of Ephedra (now known as Corinth) punished
for chronic deceitfulness by being compelled to roll an immense boulder up a
hill, only to watch it roll back down, and to repeat this action forever.
The idea of course was that the rolling of this rock up to the top of a hill,
only to have it roll back down to the bottom would be punishment; an eternal
frustration for the former king. In our current climate, legislation can
be a lot like that. I don’t have to tell you that on most issuess, the
Congress of the United States is divided and deadlocked, and looks to stay that
way for a while. A French existentialist, Albert Camus, had another
viewpoint of the myth of Sisyphus. The fact that he continued against
great odds to roll that rock up and down that hill until he achieved success
seemed beautiful. To Camus, the struggle itself was to be admired; success
could come, the fight counted!
So why should you encourage your Congressperson and your Senators to fight
against these potential cuts? Remember that we only have until August
30th to object. The Center for Medicare
and Medicaid Services is the agency responsible for administering
Medicare. They were obligated to propose cuts to Medicare funding to
dialysis centers as a result of the Fiscal Cliff (The American Taxpayer Relief
Act of 2012). Most of the commentators that I read were expecting a 2% cut
at the worst. This is a 9.4% cut, almost 10% amounting to an estimated
$970 million that goes into effect January 1, 2014. We need to call this
to the attention of our legislators, because the CMS will listen to them.
Otherwise, they will assume the cuts are not harmful and implement them.
The goal here to preserve and protect the care given to dialysis patients, not
just at their centers, but for the patients that take dialysis at home as
well. We have to ensure all patients have appropriate access to quality
care.
THE NUMBERS
There are over 415,000 people with end-stage renal disease receiving dialysis
treatments 3 or more times per week to replace kidney function and 82% are
Medicare beneficiaries. There are 26 million American Adults that are
estimated to have Chronic Kidney Disease (CKD). 1 in 10 people have kidney
disease leading to kidney failure, but don’t know it. Their numbers are
expected to rise. 2,492,040 are Medicare patients who have CKD, but whose
kidneys have not yet failed. 594, 374 Americans do have irreversible kidney
failure or End-Stage-Renal-Disease (ESRD), and require either dialysis or a
kidney transplant to survive. A person like me that is on dialysis cannot
survive long without it; estimates range as low as 5-6 days. Some say you would
be lucky to live 2-3 months. Of this group, only 179,631 Americans live
with a functioning kidney transplant. 73% of all ESRD patients apply for
Medicare to keep themselves alive. The annual cost to Medicare for its ESRD
program is $28.4 billion. This amounts to $86, 316 a year Medicare spends
on each dialysis patient.
THE REASONS
The reasons we need to act are:
Dialysis centers have already under cuts for funding for their
patients; in 2011, the Centers for Medicare & Medicaid Services (CMS)
implemented a bundled payment system for dialysis services and built in a 2%
reduction in payment. The Sequester further reduced Medicare payments for
dialysis by 2% on April 1, 2013.
Continued cuts may deter providers from opening additional facilities at a
time when the number of ESRD patients continues to rapidly grow.
The bundled payment system currently does not provide a separate payment for
innovation and further cuts will leave little room for new advancements in
patient care.
Cuts may result in reduced staffing hours at facilities and a greater burden
on staff, which detracts from providing direct patient care.
In January 2013, the Medicare Payment Advisory Committee (MedPAC) finalized a
recommendation to maintain the current level of funding for dialysis in 2014.
The Chairman noted that the recommendation did not take into account
sequestration or recent changes in law, which would reduce payment below
MedPAC’s recommendation.
Given that the dialysis bundled payment system is still new, the MedPAC
Chairman stated that payment rates should be held constant in order to fully
assess the implications of the new payment system on patient care.
The effect the cuts may have on dialysis centers for all dialysis patients is
staggering. A proposal to slash reimbursements to kidney dialysis centers
in the United States could drive down monies for Fresenius Medical Care AG and
Davita Healthcare Partners Inc, two of the world’s leading providers of dialysis
services. On July 1, 2013, the day the announcement of the cuts was made
by CMS, Fresenius’ stock fell 8.7%. Fresenius receives 30% of its revenue
from the CMS. DaVita’s stock not only fell, but it has been written that
DaVita would be forced to move towards aggressive cost cutting measure including
potential closures. Fresenius operates 2100 dialysis centers in the USA.
DaVita has estimated that its 2014 revenues could be so affected by these cuts,
that it might cost them $350 million in earnings and lower its earning per share
of stock by as much as $2.00. As a result, the bundled payment for ESRD
care would be cut from $240.36 per dialysis patient to $216.95, reported
Nephrology News & Issues. Altogether, the adjustments would result in a $970
million drop in CMS dialysis payments next year.
A Fresenius spokesman said the company was assessing the 186-page document in
which the cuts were proposed.
"Our first impression is that costs and prices have not been adequately taken
into account," said the spokesman, who declined to be named. “Proposed cuts of
this magnitude simply go too far," said Ron Kuerbitz, chairman of Kidney Care
Partners, a prominent coalition of patient advocates, manufacturers, dialysis
professionals and care providers.
"We are deeply concerned about the implications for dialysis patients and the
sustainability of the Medicare end-stage renal disease system."
Currently, across all dialysis providers, Medicare profit margins are only
3-4 percent (as estimated by the Medicare Payment Advisory Committee – MEDPAC).
Since CMS is proposing a 9.4 percent cut to the base rate for Medicare payments,
most providers will have to make considerable changes in how they operate in
order to cover the most basic costs of care. The National Kidney Foundation is
concerned that some providers may not be able to withstand cuts and will have to
close facilities and that many others may have to eliminate patient-focused
programs, services, and benefits that improve patients’ health and quality of
life.
The bottom line appears to be that the Medicare ESRD program may be
called into question in which case the people who rely on it to take dialysis
would be out in the cold. It could cause layoffs of dialysis personnel,
closing of centers, relocating of patients, and instead of life saving dialysis
on demand, we would return to rationed dialysis for the few who could afford it
and meet the requirements of some dialysis committee. (See “Who Will Die”
on You Tube for a viewpoint of what dialysis was like as recently as the
1960’s). . A nearly 10% cut, may adversely affect the quality of care provided
by the Medicare ESRD Program. In all likelihood, the proposed cut will endanger
the existence of some dialysis units—especially rural, inner-city, and smaller
clinics—making it much more difficult for people who must undergo dialysis at
least three times a week to receive their care. I take dialysis in Crown
Point, Indiana, just 5 mins from my home. If that clinic were to close for
lack of Medicare patients, even though I am a private group insurance client, I
would be forced to go 3times a week, 4 hours at time wherever they would send
me. Where would that be? Chicago? Fort Wayne?
Lafayette? South Bend? Indianapolis? What about the trusted
relationships we have built up as dialysis patients with our current nurses and
techs? They stick 2 needles in my arm every other day; they monitor the
amount of fluid they take off and the rate of speed at which they do it.
They check my blood pressure and my dry weight ever day because even the
smallest of adjustments could lead to headaches, dizziness, nausea, vomiting,
heart attacks or even death. As a dialysis patient, you truly place
yourself into the medical people’s hands. I am different that every one of
the other 40 patients at my center. The nurses and the techs, they know
about our subtle differences. They take care of us. They watch out
for us. New people in a larger center may not be able to do that; too many
patients with too little help and too little time.
If you are on PD dialysis at home, don’t feel too safe. Now if you
catheter fails at home you have HD or HD at a center to fall back on. I
wonder if this would change too. Food for thought?
ACTION YOU CAN TAKE
There are several
things that you can do that would help. First, you have to voice your
concerns to your Congressperson and Senators. All of the major
organizations that I belong to including the DPC have recommended that we
contact our politicians as they CMS might be more inclined to listen to them as
well as to us. There are several ways to do that.
If you want to go online and take action you can send a customized letter
through the DPC at this site: http://tinyurl.com/qet4zj2. It is a form
letter that you can add your personal story to.
If you prefer to call your Congressperson or Senators’ offices here is a link
for that: http://tinurl.com/n46cfrp. The DPC provide some
sample points to make and they give you the numbers.
If you want to sign a petition online, here is a link for that:
https://www.change.org/petitions/center-for-medicaid-and-medicare-services-cms-withdraw-the-proposed-cuts-to-dialysis-centers-and-esrd-patients
If you want to write a letter to your Congressperson/Senator here is a link
for names, and addresses to find them: http://whoismyrepresentative.com/
Here are some ideas for what you could include in a letter:
My name is [YOUR NAME]. I am a dialysis
patient/caregiver/spouse/relative and I live in [CITY, TOWN NAME]
I am writing to you to express my outrage over the proposed Medicare cut for
my dialysis care by over 9%
I rely on Medicare for my dialysis treatments and would not be alive today
without it
These cuts are dangerous and threaten my care. I need my dialysis
facility to be able to stay open and have enough staff
Please do what you can to change these terrible cuts to dialysis today
Make sure to tell your friends and family to do the same!
Here is a form letter:
CMS’ Proposed Cuts to the Medicare ESRD Program Put Access to Dialysis Care
at Serious Risk
As your constituent and an advocate for kidney care, I am writing to express
my very serious concern about and opposition to the Centers for Medicare and
Medicaid Services’ (CMS) proposal to cut Medicare’s end-stage renal disease
program by nearly 10 percent, or approximately $30 out of the current
reimbursement rate of $246 per dialysis session. A cut of this magnitude
would be devastating. If this proposed rule is finalized, it will have
damaging effects on people with kidney failure.
More than 400,000 Americans have irreversible kidney failure. Approximately
85 percent of these individuals rely on Medicare for their dialysis care.
As you are aware, Medicare-covered dialysis has been subject to numerous
reimbursement reductions in recent years. Additional cuts of the scope that CMS
proposes could reduce access to care or undermine quality.
I urge you to ensure that Medicare reimbursement for dialysis is sufficient
to cover the cost of care. I also urge you to emphasize this point to CMS.
James W. Myers, III
If you want to write to the CMS directly:
WHERE TO CONTACT THE CMS: You may submit comments in one of four ways (please
choose only one of the ways
listed):
1. Electronically. You may submit electronic comments on this regulation to
http://www.regulations.gov/. Follow the “Submit a
comment" instructions.
2. By regular mail. You may mail written comments to the following
address ONLY:
Centers for Medicare & Medicaid Services,
Department of Health and Human Services,
Attention: CMS-1526-P,
P.O. Box 8010,
Baltimore, MD 21244-8010.
Please allow sufficient time for mailed comments to be received before
the close of the comment period.
3. By express or overnight mail. You may send written comments to the
following
address ONLY:
Centers for Medicare & Medicaid Services,
Department of Health and Human Services,
Attention: CMS-1526-P,
Mail Stop C4-26-05,
7500 Security Boulevard,
Baltimore, MD 21244-1850.
4. By hand or courier. Alternatively, you may deliver (by hand or
courier) your written comments ONLY to the following addresses prior to the
close of the comment period:
a. For delivery in Washington, DC—
CMS-1526-P 3
Centers for Medicare & Medicaid Services,
Department of Health and Human Services,
Room 445-G, Hubert H. Humphrey Building,
200 Independence Avenue, SW.,
Washington, DC 20201
(Because access to the interior of the Hubert H. Humphrey Building is
not readily available to persons without Federal government identification,
commenters are encouraged to leave their comments in the CMS drop slots located
in the main lobby of the building. A stamp- in clock is available for persons
wishing to retain a proof of filing by stamping in and retaining an extra copy
of the comments being filed.)
b. For delivery in Baltimore, MD—
Centers for Medicare & Medicaid Services,
Department of Health and Human Services,
7500 Security Boulevard,
Baltimore, MD 21244-1850.
If you intend to deliver your comments to the Baltimore address, call
telephone number (410) 786-9994 in advance to schedule your arrival with one of
our staff members.
Comments erroneously mailed to the addresses indicated as appropriate for
hand or courier delivery may be delayed and received after the comment period.
For information on viewing public comments, see the beginning of the
“SUPPLEMENTARY INFORMATION" section.
FOR FURTHER INFORMATION CONTACT:
Michelle Cruse, (410) 786-7540, for issues related to the ESRD PPS.
CMS-1526-P 4
Stephanie Frilling, (410) 786-4507, for issues related to the ESRD PPS
wage index, home dialysis training, and the delay in payment for oral-only drugs
under the ESRD PPS.
Heidi Oumarou, (410) 786-7942, for issues related to the ESRD market
basket.
Anita Segar, (410) 786-4614, for issues related to the ESRD QIP.
Sandhya Gilkerson, (410) 786-4085, for issues related to the
clarification of the grandfathering
provision related to the 3-year MLR for DME.
Anita Greenberg (410) 786-4601, for issues related to the clarification
of the definition of routinely purchased DME.
Christopher Molling (410) 786-6399, for issues related to DMEPOS
technical amendments and corrections.
Hafsa Vahora, (410) 786-7899, for issues related to the implementation of
budget neutral fee schedules for splints and casts, and IOLs inserted in a
physician’s office.
THE CENTER FOR DISEASE SERVICES RECENT PROPOSED CUTS TO FUNDING FOR MEDICARE
DIALYSIS PATIENTS AND THE MYTH OF SISYPHUS
I was on a conference
call this week with the executives from the Dialysis Patient Citizens where we
were discussing the CMS’ proposed cuts of payments to dialysis centers and
Medicare patients. The speaker mad a very good point that as advocates we
must remain consistent. By consistent, he meant that we must be prepared
to fight against this issue not just for now, for maybe for a while. That
sometimes legislation comes about just not from adjustments made to hot button
issues, but from a persistent effort to make your point. You fight not
just because it is trendy, but you fight because it is the right thing to
do. A fight is more than one round, it is many rounds; it is not a sprint,
sometimes it is a marathon. Much like baseball, legislation is 162 games;
it is a long season. You must give your best effort, because in the long
run there is only one question that really needs to be asked: what is the
right thing to do here? It is not a political question; it is not just an
ethical question. It is a moral question. It is a lot like corporate
responsibility; you look at all sides of an issue and all the viewpoints of the
players, then you do what is best for everyone. I have asked myself this
question and the answer is very clear to me. The best thing to do for all
concerned is to protest, resist and outright fight against such severe cuts to
Medicare dialysis patients.
What does Sisyphus
have to do with cuts to dialysis centers and Medicare patients? In
Greek mythology Sisyphus was a king of Ephedra (now known as Corinth) punished
for chronic deceitfulness by being compelled to roll an immense boulder up a
hill, only to watch it roll back down, and to repeat this action forever.
The idea of course was that the rolling of this rock up to the top of a hill,
only to have it roll back down to the bottom would be punishment; an eternal
frustration for the former king. In our current climate, legislation can
be a lot like that. I don’t have to tell you that on most issuess, the
Congress of the United States is divided and deadlocked, and looks to stay that
way for a while. A French existentialist, Albert Camus, had another
viewpoint of the myth of Sisyphus. The fact that he continued against
great odds to roll that rock up and down that hill until he achieved success
seemed beautiful. To Camus, the struggle itself was to be admired; success
could come, the fight counted!
So why should you encourage your Congressperson and your Senators to fight
against these potential cuts? Remember that we only have until August
30th to object. The Center for Medicare
and Medicaid Services is the agency responsible for administering
Medicare. They were obligated to propose cuts to Medicare funding to
dialysis centers as a result of the Fiscal Cliff (The American Taxpayer Relief
Act of 2012). Most of the commentators that I read were expecting a 2% cut
at the worst. This is a 9.4% cut, almost 10% amounting to an estimated
$970 million that goes into effect January 1, 2014. We need to call this
to the attention of our legislators, because the CMS will listen to them.
Otherwise, they will assume the cuts are not harmful and implement them.
The goal here to preserve and protect the care given to dialysis patients, not
just at their centers, but for the patients that take dialysis at home as
well. We have to ensure all patients have appropriate access to quality
care.
THE NUMBERS
There are over 415,000 people with end-stage renal disease receiving dialysis
treatments 3 or more times per week to replace kidney function and 82% are
Medicare beneficiaries. There are 26 million American Adults that are
estimated to have Chronic Kidney Disease (CKD). 1 in 10 people have kidney
disease leading to kidney failure, but don’t know it. Their numbers are
expected to rise. 2,492,040 are Medicare patients who have CKD, but whose
kidneys have not yet failed. 594, 374 Americans do have irreversible kidney
failure or End-Stage-Renal-Disease (ESRD), and require either dialysis or a
kidney transplant to survive. A person like me that is on dialysis cannot
survive long without it; estimates range as low as 5-6 days. Some say you would
be lucky to live 2-3 months. Of this group, only 179,631 Americans live
with a functioning kidney transplant. 73% of all ESRD patients apply for
Medicare to keep themselves alive. The annual cost to Medicare for its ESRD
program is $28.4 billion. This amounts to $86, 316 a year Medicare spends
on each dialysis patient.
THE REASONS
The reasons we need to act are:
Dialysis centers have already under cuts for funding for their
patients; in 2011, the Centers for Medicare & Medicaid Services (CMS)
implemented a bundled payment system for dialysis services and built in a 2%
reduction in payment. The Sequester further reduced Medicare payments for
dialysis by 2% on April 1, 2013.
Continued cuts may deter providers from opening additional facilities at a
time when the number of ESRD patients continues to rapidly grow.
The bundled payment system currently does not provide a separate payment for
innovation and further cuts will leave little room for new advancements in
patient care.
Cuts may result in reduced staffing hours at facilities and a greater burden
on staff, which detracts from providing direct patient care.
In January 2013, the Medicare Payment Advisory Committee (MedPAC) finalized a
recommendation to maintain the current level of funding for dialysis in 2014.
The Chairman noted that the recommendation did not take into account
sequestration or recent changes in law, which would reduce payment below
MedPAC’s recommendation.
Given that the dialysis bundled payment system is still new, the MedPAC
Chairman stated that payment rates should be held constant in order to fully
assess the implications of the new payment system on patient care.
The effect the cuts may have on dialysis centers for all dialysis patients is
staggering. A proposal to slash reimbursements to kidney dialysis centers
in the United States could drive down monies for Fresenius Medical Care AG and
Davita Healthcare Partners Inc, two of the world’s leading providers of dialysis
services. On July 1, 2013, the day the announcement of the cuts was made
by CMS, Fresenius’ stock fell 8.7%. Fresenius receives 30% of its revenue
from the CMS. DaVita’s stock not only fell, but it has been written that
DaVita would be forced to move towards aggressive cost cutting measure including
potential closures. Fresenius operates 2100 dialysis centers in the USA.
DaVita has estimated that its 2014 revenues could be so affected by these cuts,
that it might cost them $350 million in earnings and lower its earning per share
of stock by as much as $2.00. As a result, the bundled payment for ESRD
care would be cut from $240.36 per dialysis patient to $216.95, reported
Nephrology News & Issues. Altogether, the adjustments would result in a $970
million drop in CMS dialysis payments next year.
A Fresenius spokesman said the company was assessing the 186-page document in
which the cuts were proposed.
"Our first impression is that costs and prices have not been adequately taken
into account," said the spokesman, who declined to be named. “Proposed cuts of
this magnitude simply go too far," said Ron Kuerbitz, chairman of Kidney Care
Partners, a prominent coalition of patient advocates, manufacturers, dialysis
professionals and care providers.
"We are deeply concerned about the implications for dialysis patients and the
sustainability of the Medicare end-stage renal disease system."
Currently, across all dialysis providers, Medicare profit margins are only
3-4 percent (as estimated by the Medicare Payment Advisory Committee – MEDPAC).
Since CMS is proposing a 9.4 percent cut to the base rate for Medicare payments,
most providers will have to make considerable changes in how they operate in
order to cover the most basic costs of care. The National Kidney Foundation is
concerned that some providers may not be able to withstand cuts and will have to
close facilities and that many others may have to eliminate patient-focused
programs, services, and benefits that improve patients’ health and quality of
life.
The bottom line appears to be that the Medicare ESRD program may be
called into question in which case the people who rely on it to take dialysis
would be out in the cold. It could cause layoffs of dialysis personnel,
closing of centers, relocating of patients, and instead of life saving dialysis
on demand, we would return to rationed dialysis for the few who could afford it
and meet the requirements of some dialysis committee. (See “Who Will Die”
on You Tube for a viewpoint of what dialysis was like as recently as the
1960’s). . A nearly 10% cut, may adversely affect the quality of care provided
by the Medicare ESRD Program. In all likelihood, the proposed cut will endanger
the existence of some dialysis units—especially rural, inner-city, and smaller
clinics—making it much more difficult for people who must undergo dialysis at
least three times a week to receive their care. I take dialysis in Crown
Point, Indiana, just 5 mins from my home. If that clinic were to close for
lack of Medicare patients, even though I am a private group insurance client, I
would be forced to go 3times a week, 4 hours at time wherever they would send
me. Where would that be? Chicago? Fort Wayne?
Lafayette? South Bend? Indianapolis? What about the trusted
relationships we have built up as dialysis patients with our current nurses and
techs? They stick 2 needles in my arm every other day; they monitor the
amount of fluid they take off and the rate of speed at which they do it.
They check my blood pressure and my dry weight ever day because even the
smallest of adjustments could lead to headaches, dizziness, nausea, vomiting,
heart attacks or even death. As a dialysis patient, you truly place
yourself into the medical people’s hands. I am different that every one of
the other 40 patients at my center. The nurses and the techs, they know
about our subtle differences. They take care of us. They watch out
for us. New people in a larger center may not be able to do that; too many
patients with too little help and too little time.
If you are on PD dialysis at home, don’t feel too safe. Now if you
catheter fails at home you have HD or HD at a center to fall back on. I
wonder if this would change too. Food for thought?
ACTION YOU CAN TAKE
There are several
things that you can do that would help. First, you have to voice your
concerns to your Congressperson and Senators. All of the major
organizations that I belong to including the DPC have recommended that we
contact our politicians as they CMS might be more inclined to listen to them as
well as to us. There are several ways to do that.
If you want to go online and take action you can send a customized letter
through the DPC at this site: http://tinyurl.com/qet4zj2. It is a form
letter that you can add your personal story to.
If you prefer to call your Congressperson or Senators’ offices here is a link
for that: http://tinurl.com/n46cfrp. The DPC provide some
sample points to make and they give you the numbers.
If you want to sign a petition online, here is a link for that:
https://www.change.org/petitions/center-for-medicaid-and-medicare-services-cms-withdraw-the-proposed-cuts-to-dialysis-centers-and-esrd-patients
If you want to write a letter to your Congressperson/Senator here is a link
for names, and addresses to find them: http://whoismyrepresentative.com/
Here are some ideas for what you could include in a letter:
My name is [YOUR NAME]. I am a dialysis
patient/caregiver/spouse/relative and I live in [CITY, TOWN NAME]
I am writing to you to express my outrage over the proposed Medicare cut for
my dialysis care by over 9%
I rely on Medicare for my dialysis treatments and would not be alive today
without it
These cuts are dangerous and threaten my care. I need my dialysis
facility to be able to stay open and have enough staff
Please do what you can to change these terrible cuts to dialysis today
Make sure to tell your friends and family to do the same!
Here is a form letter:
CMS’ Proposed Cuts to the Medicare ESRD Program Put Access to Dialysis Care
at Serious Risk
As your constituent and an advocate for kidney care, I am writing to express
my very serious concern about and opposition to the Centers for Medicare and
Medicaid Services’ (CMS) proposal to cut Medicare’s end-stage renal disease
program by nearly 10 percent, or approximately $30 out of the current
reimbursement rate of $246 per dialysis session. A cut of this magnitude
would be devastating. If this proposed rule is finalized, it will have
damaging effects on people with kidney failure.
More than 400,000 Americans have irreversible kidney failure. Approximately
85 percent of these individuals rely on Medicare for their dialysis care.
As you are aware, Medicare-covered dialysis has been subject to numerous
reimbursement reductions in recent years. Additional cuts of the scope that CMS
proposes could reduce access to care or undermine quality.
I urge you to ensure that Medicare reimbursement for dialysis is sufficient
to cover the cost of care. I also urge you to emphasize this point to CMS.
James W. Myers, III
If you want to write to the CMS directly:
WHERE TO CONTACT THE CMS: You may submit comments in one of four ways (please
choose only one of the ways
listed):
1. Electronically. You may submit electronic comments on this regulation to
http://www.regulations.gov/. Follow the “Submit a
comment" instructions.
2. By regular mail. You may mail written comments to the following
address ONLY:
Centers for Medicare & Medicaid Services,
Department of Health and Human Services,
Attention: CMS-1526-P,
P.O. Box 8010,
Baltimore, MD 21244-8010.
Please allow sufficient time for mailed comments to be received before
the close of the comment period.
3. By express or overnight mail. You may send written comments to the
following
address ONLY:
Centers for Medicare & Medicaid Services,
Department of Health and Human Services,
Attention: CMS-1526-P,
Mail Stop C4-26-05,
7500 Security Boulevard,
Baltimore, MD 21244-1850.
4. By hand or courier. Alternatively, you may deliver (by hand or
courier) your written comments ONLY to the following addresses prior to the
close of the comment period:
a. For delivery in Washington, DC—
CMS-1526-P 3
Centers for Medicare & Medicaid Services,
Department of Health and Human Services,
Room 445-G, Hubert H. Humphrey Building,
200 Independence Avenue, SW.,
Washington, DC 20201
(Because access to the interior of the Hubert H. Humphrey Building is
not readily available to persons without Federal government identification,
commenters are encouraged to leave their comments in the CMS drop slots located
in the main lobby of the building. A stamp- in clock is available for persons
wishing to retain a proof of filing by stamping in and retaining an extra copy
of the comments being filed.)
b. For delivery in Baltimore, MD—
Centers for Medicare & Medicaid Services,
Department of Health and Human Services,
7500 Security Boulevard,
Baltimore, MD 21244-1850.
If you intend to deliver your comments to the Baltimore address, call
telephone number (410) 786-9994 in advance to schedule your arrival with one of
our staff members.
Comments erroneously mailed to the addresses indicated as appropriate for
hand or courier delivery may be delayed and received after the comment period.
For information on viewing public comments, see the beginning of the
“SUPPLEMENTARY INFORMATION" section.
FOR FURTHER INFORMATION CONTACT:
Michelle Cruse, (410) 786-7540, for issues related to the ESRD PPS.
CMS-1526-P 4
Stephanie Frilling, (410) 786-4507, for issues related to the ESRD PPS
wage index, home dialysis training, and the delay in payment for oral-only drugs
under the ESRD PPS.
Heidi Oumarou, (410) 786-7942, for issues related to the ESRD market
basket.
Anita Segar, (410) 786-4614, for issues related to the ESRD QIP.
Sandhya Gilkerson, (410) 786-4085, for issues related to the
clarification of the grandfathering
provision related to the 3-year MLR for DME.
Anita Greenberg (410) 786-4601, for issues related to the clarification
of the definition of routinely purchased DME.
Christopher Molling (410) 786-6399, for issues related to DMEPOS
technical amendments and corrections.
Hafsa Vahora, (410) 786-7899, for issues related to the implementation of
budget neutral fee schedules for splints and casts, and IOLs inserted in a
physician’s office.
KIDNEY STORIES: DOES THE IMMUNOSUPPRESSIVE DRUG BILL CONFLICT WITH THE RECENT BACKLASH AGAINST THE CMS SUGGESTION TO CUT FUNDING TO DIALYSIS PATIENTS?
kidneystories2013
KIDNEY STORIES: DOES THE IMMUNOSUPPRESSIVE DRUG BILL
CONFLICT WITH THE RECENT BACKLASH AGAINST THE CMS SUGGESTION TO CUT FUNDING TO
DIALYSIS PATIENTS?
DOES THE IMMUNOSUPPRESSIVE DRUG BILL CONFLICT WITH THE RECENT BACKLASH
AGAINST THE CMS SUGGESTION TO CUT FUNDING TO DIALYSIS PATIENTS?
When a patient’s
kidneys fail, he has 3 choices; (1) dialysis; (2) a preemptive transplant; or
(3) death. Although there is little question that a transplant results in
the best lifestyle for a patient, more often than not, dialysis is the initial
course chosen. This occurs because there is a shortage of available
kidneys and donors. Over 90% of us with End Stage Renal Disease end up
starting our initial course of treatment on dialysis. http://www.bidmc.org/Centers-and-Departments/Departments/Transplant-Institute/Kidney/The-Benefits-of-Transplant-versus-Dialysis.aspx.
According to the NKF, 26 Million Americans have Chronic Kidney Disease.
415,013 ESRD patients receive dialysis at least 3 times per week to replace
kidney function. See flyer from NKF called “Kidney Disease by the
Numbers.” www.kidney.org/advocacy/…/KIDNEY_DISEASE_BY_THE_NUMBERS.
Pdf.
Recently, a question was raised to me if the National Kidney Foundation
prefers preserving the dialysis system over transplants. As the Advocate
for the State of Indiana for the NKF, I would say this is incorrect.
The NKF has proposed
the End the Wait program, a bold, progressive proposal to universally lessen the
wait for a transplanted kidney across the U.S. to less than a year. http://www.kidney.org/transplantation/endthewait/index.cfm.
The proposed initiative is part of a much larger legislative & social plan
called the 2013-2018 Strategic Plan for the direction the NKF wants to take with
legislation, education, awareness, prevention and treatment. https://www.kidney.org/about/strategic_plan/2013/.
Part of both of those initiatives is legislation called “The Comprehensive
Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2013,”
(S.323 and H.R.1428).
This bill addresses
the issue concerning Kidney transplant recipients who are eligible for Medicare
due to irreversible kidney failure, but who are not Medicare-aged or
Medicare-disabled, lose their Medicare three years after the transplant. This
legislation would continue access to Medicare indefinitely, but would cover
anti-rejection medications only. All other Medicare would end after three years
for kidney recipients, as under current law. https://secure2.convio.net/nkf/site/Advocacy?cmd=display&page=UserAction&id=115.
The Medicare End Stage Renal Disease (ESRD) program pays for
dialysis or transplantation for over 600,000 kidney disease patients every year,
regardless of age, and has saved millions of lives in the four decades since its
enactment. After a transplant, recipients must take immunosuppressive
drugs every day for the life of the transplant; failure to do so significantly
increases the risk of organ rejection. Kidney recipients, who qualify for
Medicare based on their ESRD rather than on age or other disability, lose
Medicare coverage 36 months after the transplant. However, if they remain
on dialysis, they have lifetime Medicare eligibility. Transplant
recipients often have difficulty finding other coverage for their
immunosuppressive drugs after Medicare coverage ends.
Medicare spends an
average of $86,316 per year for an individual who is on dialysis and $124,643
during the first year of a kidney transplant. However, after the year of
transplant, the cost is much lower at $24,612 for an individual with a
functioning kidney transplant. If the transplant fails, the patient
returns to dialysis or receives another transplant, each covered again by
Medicare. Notice that on a per year average, per patient, we are talking about
almost a $60, 000.00/year difference. ($83, 316 - $24, 612= $58, 704). https://nkfadvocacy.wordpress.com/immunosuppressive-drug-coverage/.
Extending immunosuppressive coverage beyond the 36-month post-transplant
limit would improve outcomes and enable more kidney patients who lack adequate
insurance to consider transplantation. Most transplant recipients also
have a higher quality of life, and are more likely to return to work than
dialysis patients.
This is particularly necessary legislation when you consider that the average
lifespan of a transplanted kidney from a living donor kidney functions, on
average, 12 to 20 years (144 months to 240 months), and a deceased donor kidney
from 8 to 12 years(96 months to 144 months). - See more at: http://www.bidmc.org/Centers-and-Departments/Departments/Transplant-Institute/Kidney/The-Benefits-of-Transplant-versus-Dialysis.aspx#sthash.wRrhXYBV.dpuf.
It becomes even more striking when you take into account that the average
life expectancy of a dialysis patient is five and six years. http://www.kidneyfund.org/kidney-health/kidney-basics/common-questions.html.
Further complicating the issue, according to the NKF, of the 415,013 Americans
currently on dialysis, as of March, 2013, 95,474 are awaiting a kidney
transplant. Last year, 16,485 Americans received a kidney
transplant. Every 10 minutes, someone is added to the transplant list,
totaling about 3,000 each month. Every day, 19 people on the list die
awaiting a transplant. Last year, 4,903 patients died while waiting
for a kidney transplant. http://www.kidney.org/news/newsroom/factsheets/Organ-Donation-and-Transplantation-Stats.cfm.
As you can see, transplants and helping people pay for anti-rejection
medications are a legislative priority, but by no means have they forsaken those
of us on dialysis.
Proof of the NKF’s support of dialysis patients was shown earlier this
week. On Monday July 1, the Centers for Medicare & Medicaid Services
(CMS) released the annual proposed rule to update Medicare payment to dialysis
providers beginning January 1, 2014 and to modify the Quality Incentive Program
(QIP), which reduces reimbursement to providers if they don’t meet specified
quality measures. What is most notable about this year’s proposed payment rule
(also known as the End-stage Renal Disease Prospective Payment System – ESRD
PPS) is that in response to legislation passed by Congress, CMS proposed to cut
payment to dialysis providers by 9.4 percent. https://nkfadvocacy.wordpress.com/2013/07/03/medicare-proposes-deep-cuts-for-dialysis/#more-684.
The American Taxpayer Relief Act (ATRA)(The Fiscal Cliff) of 2012 required
CMS to reduce the payment rate based on the decline in the use of injectable
drugs (and their oral equivalents), most notably, erythropoietin stimulating
agents (ESA). While ATRA required CMS to reduce the payment rate it did not
specify the amount of the reduction, but instead to factor in the decline in the
use of these drugs and the current price of the drugs. The National Kidney
Foundation (NKF) understands CMS is required by law to reduce the payment
rate. However, NKF is concerned about the impact that this large of a cut
may have on patient care across the
country.
According to the NKF, Currently, across all dialysis providers, Medicare
profit margins are only 3-4 percent (as estimated by the Medicare Payment
Advisory Committee – MEDPAC). Since CMS is proposing a 9.4 percent cut to the
base rate for Medicare payments, most providers will have to make considerable
changes in how they operate in order to cover the most basic costs of care. NKF
is concerned that some providers may not be able to withstand cuts and will have
to close facilities and that many others may have to eliminate patient-focused
programs, services, and benefits that improve patients’ health and quality of
life. Rather than wait and see how dialysis facilities respond to the cuts, we
hope that Congress and CMS will engage in a meaningful dialogue with dialysis
providers, patient groups, professionals, and others involved in caring for
patients to identify ways to reduce the proposed cuts while still complying with
the law. https://nkfadvocacy.wordpress.com/2013/07/03/medicare-proposes-deep-cuts-for-dialysis/#more-684.
Also included in this
proposed rule are a number of changes to the Medicare ESRD Quality Incentive
Program (QIP) that if finalized would impact Medicare payments in 2016. The QIP
is a provider penalty program that has been in place since 2012. Dialysis
facilities can receive a 0-2 percent reduction in Medicare payments for not
meeting the specified quality measures. Each year CMS makes changes to the
program to add, remove, or revise quality measures based on new standards of
care, or the availability of new data. CMS is proposing to include five new
measures that facilities will start being measured on in 2014.
These include:
◾The percentage of in-center and home dialysis patients with hypercalcemia (a
serum calcium level above 10.2%)
◾The percentage of hemodialysis (including home) patients with a bloodstream
infection
◾The percentage of dialysis patients that the facility states have been
educated and advised on the risks, benefits and options for anemia treatment
◾A requirement to report on iron therapy for all pediatric patients
◾A requirement to report certain health related conditions that each dialysis
patient has. These conditions include heart disease, hypertension, diabetes,
drug and alcohol dependence, tobacco use as well as others.
If finalized, these five measures will be in addition to the six that are
currently being measured. http://www.dialysisreports.org/ESRDMeasures.aspx.
The NKF reminds us that given the proposed 9.4 percent cut to dialysis
payments in 2014, we note that for many facilities implementing strategies to
achieve some of these quality measures may be particularly challenging. However,
NKF believes quality measurement is an important way to drive improvement in the
quality of care patients receive. As we continue to review the proposed
regulation, we will consider the impact of the proposed changes to dialysis
payment and to the QIP on patient care and provide recommendations to CMS before
the agency issues a final rule. As we prepare these recommendations we will call
on many of our patient and professional volunteers to weigh in as the experts.
Comments are due to CMS August 30, 2013 and we will be sure to share with your
our final comment letter and activities around this proposed rule. https://nkfadvocacy.wordpress.com/2013/07/03/medicare-proposes-deep-cuts-for-dialysis/#more-684.
The National Kidney fund has long been ardent supporters of dialysis
patients. This includes advocating for the protection of dialysis patient
access and the quality of care dialysis patients receive in dialysis
centers. (Flyer, “Protect Dialysis Patient Access and Quality of Care,”
from the National Kidney Foundation distributed at Advocacy on the Hill, March,
2013). As the NKF notes, Over 415,000 people with end-stage renal disease
receive dialysis treatments 3 or more times per week to replace kidney function
and 82% are Medicare beneficiaries. Some cuts to dialysis center funding
have already taken place:
In 2011, the Centers for Medicare & Medicaid Services (CMS) implemented a
bundled payment system for dialysis services and built in a 2% reduction in
payment.
Sequestration will further reduce Medicare payments for dialysis by 2% on
April 1, 2013.
These cuts on top of the proposed cuts suggested by the CMS may have the
following results:
• Continued cuts may deter
providers from opening additional facilities at a time when the number of ESRD
patients continues to rapidly grow.
• The bundled payment system
currently does not provide a separate payment for innovation and further cuts
will leave little room for new advancements in patient care.
• Cuts may result in reduced
staffing hours at facilities and a greater burden on staff, which detracts from
providing direct patient care.
• In January 2013, the
Medicare Payment Advisory Committee (MedPAC) finalized a recommendation to
maintain the current level of funding for dialysis in 2014. The Chairman noted
that the recommendation did not take into account sequestration or recent
changes in law, which would reduce payment below MedPAC’s recommendation.
• Given that the dialysis
bundled payment system is still new, the MedPAC Chairman stated that payment
rates should be held constant in order to fully assess the implications of the
new payment system on patient care.
(Flyer, “Protect Dialysis Patient Access and Quality of Care,” from the
National Kidney Foundation distributed at Advocacy on the Hill, March,
2013).
The flyer concludes with the following statement: “[The] NKF requests
Congress protect patient access to quality dialysis care, by ensuring no further
cuts to payment are made.”
The original question
for this blog was does the NKF favor dialysis patients over transplants or
transplant patients over dialysis patients? At the WDC Advocacy on the
Hill Event in March, I was taught to advocate for both the extension of
anti-rejection drugs for transplant patients for the rest of their lives as
opposed to 36 months and to protect and preserve funding for dialysis centers
and patients. It is a very consistent position with the fact that more
people whose kidneys fail initially end up on dialysis, and get transplanted
kidneys at a later date. They have a new, broad vision lowering the time
on a transplant list universally in the USA to 1 years’ time within in the next
decade. http://www.kidney.org/transplantation/endthewait/index.cfm;
http://www.kidney.org/transplantation/endthewait/etw_recommendations.cfm.
They have a broad, progressive plan for both dialysis patients and
transplanted patients that they are in the process of advocating and
implementing. (2013-2018 Strategic Plan). https://www.kidney.org/about/strategic_plan/2013/.
I can only conclude that the NKF is saying that so many people end up on
dialysis (what is the rate about 90 %) while awaiting a transplant, that in
order to improve the transplant conversion rate and extend life, we have to make
sure that dialysis patients don’t die while they are waiting. I see these
things as congruent, not conflicting. As your advocate, I am currently on
dialysis and on 2, possibly 3 waiting lists for a transplanted kidney. The
numbers I have cited in this blog are all from the NKF concerning the number of
people on dialysis (415,013); the number of people awaiting a transplant (95,
474 as of 3/8/2013); the number of people who received a transplant last year
(16, 485); the cost per year, per person for dialysis ($86, 316); the cost per
person, per year for anti-rejection meds for a transplanted patient after the
first year ($24, 612). The NKF clearly does not favor dialysis over
transplantation; on the contrary they recognize that dialysis may very well come
first and transplantation second. A number of my fellow advocates from
other states were transplanted kidney patients. The NKF sponsored all of
us equally. It is very clear that transplantation leads to a better
lifestyle. As an Advocate, I celebrate all of my transplanted
friends. I too hope someday to be given the gift of life. We are all
on the same side of the rope, pulling in the same direction. Kidney
disease is a killer. Dialysis and transplantation are our only real
alternatives to maintain life.
KIDNEY STORIES: DOES THE IMMUNOSUPPRESSIVE DRUG BILL
CONFLICT WITH THE RECENT BACKLASH AGAINST THE CMS SUGGESTION TO CUT FUNDING TO
DIALYSIS PATIENTS?
DOES THE IMMUNOSUPPRESSIVE DRUG BILL CONFLICT WITH THE RECENT BACKLASH
AGAINST THE CMS SUGGESTION TO CUT FUNDING TO DIALYSIS PATIENTS?
When a patient’s
kidneys fail, he has 3 choices; (1) dialysis; (2) a preemptive transplant; or
(3) death. Although there is little question that a transplant results in
the best lifestyle for a patient, more often than not, dialysis is the initial
course chosen. This occurs because there is a shortage of available
kidneys and donors. Over 90% of us with End Stage Renal Disease end up
starting our initial course of treatment on dialysis. http://www.bidmc.org/Centers-and-Departments/Departments/Transplant-Institute/Kidney/The-Benefits-of-Transplant-versus-Dialysis.aspx.
According to the NKF, 26 Million Americans have Chronic Kidney Disease.
415,013 ESRD patients receive dialysis at least 3 times per week to replace
kidney function. See flyer from NKF called “Kidney Disease by the
Numbers.” www.kidney.org/advocacy/…/KIDNEY_DISEASE_BY_THE_NUMBERS.
Pdf.
Recently, a question was raised to me if the National Kidney Foundation
prefers preserving the dialysis system over transplants. As the Advocate
for the State of Indiana for the NKF, I would say this is incorrect.
The NKF has proposed
the End the Wait program, a bold, progressive proposal to universally lessen the
wait for a transplanted kidney across the U.S. to less than a year. http://www.kidney.org/transplantation/endthewait/index.cfm.
The proposed initiative is part of a much larger legislative & social plan
called the 2013-2018 Strategic Plan for the direction the NKF wants to take with
legislation, education, awareness, prevention and treatment. https://www.kidney.org/about/strategic_plan/2013/.
Part of both of those initiatives is legislation called “The Comprehensive
Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2013,”
(S.323 and H.R.1428).
This bill addresses
the issue concerning Kidney transplant recipients who are eligible for Medicare
due to irreversible kidney failure, but who are not Medicare-aged or
Medicare-disabled, lose their Medicare three years after the transplant. This
legislation would continue access to Medicare indefinitely, but would cover
anti-rejection medications only. All other Medicare would end after three years
for kidney recipients, as under current law. https://secure2.convio.net/nkf/site/Advocacy?cmd=display&page=UserAction&id=115.
The Medicare End Stage Renal Disease (ESRD) program pays for
dialysis or transplantation for over 600,000 kidney disease patients every year,
regardless of age, and has saved millions of lives in the four decades since its
enactment. After a transplant, recipients must take immunosuppressive
drugs every day for the life of the transplant; failure to do so significantly
increases the risk of organ rejection. Kidney recipients, who qualify for
Medicare based on their ESRD rather than on age or other disability, lose
Medicare coverage 36 months after the transplant. However, if they remain
on dialysis, they have lifetime Medicare eligibility. Transplant
recipients often have difficulty finding other coverage for their
immunosuppressive drugs after Medicare coverage ends.
Medicare spends an
average of $86,316 per year for an individual who is on dialysis and $124,643
during the first year of a kidney transplant. However, after the year of
transplant, the cost is much lower at $24,612 for an individual with a
functioning kidney transplant. If the transplant fails, the patient
returns to dialysis or receives another transplant, each covered again by
Medicare. Notice that on a per year average, per patient, we are talking about
almost a $60, 000.00/year difference. ($83, 316 - $24, 612= $58, 704). https://nkfadvocacy.wordpress.com/immunosuppressive-drug-coverage/.
Extending immunosuppressive coverage beyond the 36-month post-transplant
limit would improve outcomes and enable more kidney patients who lack adequate
insurance to consider transplantation. Most transplant recipients also
have a higher quality of life, and are more likely to return to work than
dialysis patients.
This is particularly necessary legislation when you consider that the average
lifespan of a transplanted kidney from a living donor kidney functions, on
average, 12 to 20 years (144 months to 240 months), and a deceased donor kidney
from 8 to 12 years(96 months to 144 months). - See more at: http://www.bidmc.org/Centers-and-Departments/Departments/Transplant-Institute/Kidney/The-Benefits-of-Transplant-versus-Dialysis.aspx#sthash.wRrhXYBV.dpuf.
It becomes even more striking when you take into account that the average
life expectancy of a dialysis patient is five and six years. http://www.kidneyfund.org/kidney-health/kidney-basics/common-questions.html.
Further complicating the issue, according to the NKF, of the 415,013 Americans
currently on dialysis, as of March, 2013, 95,474 are awaiting a kidney
transplant. Last year, 16,485 Americans received a kidney
transplant. Every 10 minutes, someone is added to the transplant list,
totaling about 3,000 each month. Every day, 19 people on the list die
awaiting a transplant. Last year, 4,903 patients died while waiting
for a kidney transplant. http://www.kidney.org/news/newsroom/factsheets/Organ-Donation-and-Transplantation-Stats.cfm.
As you can see, transplants and helping people pay for anti-rejection
medications are a legislative priority, but by no means have they forsaken those
of us on dialysis.
Proof of the NKF’s support of dialysis patients was shown earlier this
week. On Monday July 1, the Centers for Medicare & Medicaid Services
(CMS) released the annual proposed rule to update Medicare payment to dialysis
providers beginning January 1, 2014 and to modify the Quality Incentive Program
(QIP), which reduces reimbursement to providers if they don’t meet specified
quality measures. What is most notable about this year’s proposed payment rule
(also known as the End-stage Renal Disease Prospective Payment System – ESRD
PPS) is that in response to legislation passed by Congress, CMS proposed to cut
payment to dialysis providers by 9.4 percent. https://nkfadvocacy.wordpress.com/2013/07/03/medicare-proposes-deep-cuts-for-dialysis/#more-684.
The American Taxpayer Relief Act (ATRA)(The Fiscal Cliff) of 2012 required
CMS to reduce the payment rate based on the decline in the use of injectable
drugs (and their oral equivalents), most notably, erythropoietin stimulating
agents (ESA). While ATRA required CMS to reduce the payment rate it did not
specify the amount of the reduction, but instead to factor in the decline in the
use of these drugs and the current price of the drugs. The National Kidney
Foundation (NKF) understands CMS is required by law to reduce the payment
rate. However, NKF is concerned about the impact that this large of a cut
may have on patient care across the
country.
According to the NKF, Currently, across all dialysis providers, Medicare
profit margins are only 3-4 percent (as estimated by the Medicare Payment
Advisory Committee – MEDPAC). Since CMS is proposing a 9.4 percent cut to the
base rate for Medicare payments, most providers will have to make considerable
changes in how they operate in order to cover the most basic costs of care. NKF
is concerned that some providers may not be able to withstand cuts and will have
to close facilities and that many others may have to eliminate patient-focused
programs, services, and benefits that improve patients’ health and quality of
life. Rather than wait and see how dialysis facilities respond to the cuts, we
hope that Congress and CMS will engage in a meaningful dialogue with dialysis
providers, patient groups, professionals, and others involved in caring for
patients to identify ways to reduce the proposed cuts while still complying with
the law. https://nkfadvocacy.wordpress.com/2013/07/03/medicare-proposes-deep-cuts-for-dialysis/#more-684.
Also included in this
proposed rule are a number of changes to the Medicare ESRD Quality Incentive
Program (QIP) that if finalized would impact Medicare payments in 2016. The QIP
is a provider penalty program that has been in place since 2012. Dialysis
facilities can receive a 0-2 percent reduction in Medicare payments for not
meeting the specified quality measures. Each year CMS makes changes to the
program to add, remove, or revise quality measures based on new standards of
care, or the availability of new data. CMS is proposing to include five new
measures that facilities will start being measured on in 2014.
These include:
◾The percentage of in-center and home dialysis patients with hypercalcemia (a
serum calcium level above 10.2%)
◾The percentage of hemodialysis (including home) patients with a bloodstream
infection
◾The percentage of dialysis patients that the facility states have been
educated and advised on the risks, benefits and options for anemia treatment
◾A requirement to report on iron therapy for all pediatric patients
◾A requirement to report certain health related conditions that each dialysis
patient has. These conditions include heart disease, hypertension, diabetes,
drug and alcohol dependence, tobacco use as well as others.
If finalized, these five measures will be in addition to the six that are
currently being measured. http://www.dialysisreports.org/ESRDMeasures.aspx.
The NKF reminds us that given the proposed 9.4 percent cut to dialysis
payments in 2014, we note that for many facilities implementing strategies to
achieve some of these quality measures may be particularly challenging. However,
NKF believes quality measurement is an important way to drive improvement in the
quality of care patients receive. As we continue to review the proposed
regulation, we will consider the impact of the proposed changes to dialysis
payment and to the QIP on patient care and provide recommendations to CMS before
the agency issues a final rule. As we prepare these recommendations we will call
on many of our patient and professional volunteers to weigh in as the experts.
Comments are due to CMS August 30, 2013 and we will be sure to share with your
our final comment letter and activities around this proposed rule. https://nkfadvocacy.wordpress.com/2013/07/03/medicare-proposes-deep-cuts-for-dialysis/#more-684.
The National Kidney fund has long been ardent supporters of dialysis
patients. This includes advocating for the protection of dialysis patient
access and the quality of care dialysis patients receive in dialysis
centers. (Flyer, “Protect Dialysis Patient Access and Quality of Care,”
from the National Kidney Foundation distributed at Advocacy on the Hill, March,
2013). As the NKF notes, Over 415,000 people with end-stage renal disease
receive dialysis treatments 3 or more times per week to replace kidney function
and 82% are Medicare beneficiaries. Some cuts to dialysis center funding
have already taken place:
In 2011, the Centers for Medicare & Medicaid Services (CMS) implemented a
bundled payment system for dialysis services and built in a 2% reduction in
payment.
Sequestration will further reduce Medicare payments for dialysis by 2% on
April 1, 2013.
These cuts on top of the proposed cuts suggested by the CMS may have the
following results:
• Continued cuts may deter
providers from opening additional facilities at a time when the number of ESRD
patients continues to rapidly grow.
• The bundled payment system
currently does not provide a separate payment for innovation and further cuts
will leave little room for new advancements in patient care.
• Cuts may result in reduced
staffing hours at facilities and a greater burden on staff, which detracts from
providing direct patient care.
• In January 2013, the
Medicare Payment Advisory Committee (MedPAC) finalized a recommendation to
maintain the current level of funding for dialysis in 2014. The Chairman noted
that the recommendation did not take into account sequestration or recent
changes in law, which would reduce payment below MedPAC’s recommendation.
• Given that the dialysis
bundled payment system is still new, the MedPAC Chairman stated that payment
rates should be held constant in order to fully assess the implications of the
new payment system on patient care.
(Flyer, “Protect Dialysis Patient Access and Quality of Care,” from the
National Kidney Foundation distributed at Advocacy on the Hill, March,
2013).
The flyer concludes with the following statement: “[The] NKF requests
Congress protect patient access to quality dialysis care, by ensuring no further
cuts to payment are made.”
The original question
for this blog was does the NKF favor dialysis patients over transplants or
transplant patients over dialysis patients? At the WDC Advocacy on the
Hill Event in March, I was taught to advocate for both the extension of
anti-rejection drugs for transplant patients for the rest of their lives as
opposed to 36 months and to protect and preserve funding for dialysis centers
and patients. It is a very consistent position with the fact that more
people whose kidneys fail initially end up on dialysis, and get transplanted
kidneys at a later date. They have a new, broad vision lowering the time
on a transplant list universally in the USA to 1 years’ time within in the next
decade. http://www.kidney.org/transplantation/endthewait/index.cfm;
http://www.kidney.org/transplantation/endthewait/etw_recommendations.cfm.
They have a broad, progressive plan for both dialysis patients and
transplanted patients that they are in the process of advocating and
implementing. (2013-2018 Strategic Plan). https://www.kidney.org/about/strategic_plan/2013/.
I can only conclude that the NKF is saying that so many people end up on
dialysis (what is the rate about 90 %) while awaiting a transplant, that in
order to improve the transplant conversion rate and extend life, we have to make
sure that dialysis patients don’t die while they are waiting. I see these
things as congruent, not conflicting. As your advocate, I am currently on
dialysis and on 2, possibly 3 waiting lists for a transplanted kidney. The
numbers I have cited in this blog are all from the NKF concerning the number of
people on dialysis (415,013); the number of people awaiting a transplant (95,
474 as of 3/8/2013); the number of people who received a transplant last year
(16, 485); the cost per year, per person for dialysis ($86, 316); the cost per
person, per year for anti-rejection meds for a transplanted patient after the
first year ($24, 612). The NKF clearly does not favor dialysis over
transplantation; on the contrary they recognize that dialysis may very well come
first and transplantation second. A number of my fellow advocates from
other states were transplanted kidney patients. The NKF sponsored all of
us equally. It is very clear that transplantation leads to a better
lifestyle. As an Advocate, I celebrate all of my transplanted
friends. I too hope someday to be given the gift of life. We are all
on the same side of the rope, pulling in the same direction. Kidney
disease is a killer. Dialysis and transplantation are our only real
alternatives to maintain life.
ADVOCACY
Have a cause, position, legal or political argument to make that effects the kidney community? Post it here!
KIDNEY STORIES: PROTEST THE CUT TO FUNDING FOR DIALYSIS CENTERS & PATIENTS
Medicare Proposes Deep Cuts for Dialysis
Posted on July 3, 2013 by nkf _advocacy
On Monday July 1, the Centers for
Medicare & Medicaid Services (CMS) released the annual proposed rule to
update Medicare payment to dialysis providers beginning January 1, 2014 and to
modify the Quality Incentive Program (QIP), which reduces reimbursement to
providers if they don’t meet specified quality measures. What is most notable
about this year’s proposed payment rule (also known as the End-stage Renal
Disease Prospective Payment System – ESRD PPS) is that in response to
legislation passed by Congress, CMS proposed to cut payment to dialysis
providers by 9.4 percent.
The American Taxpayer Relief Act (ATRA)
of 2012 required CMS to reduce the payment rate based on the decline in the use
of injectable drugs (and their oral equivalents), most notably, erythropoietin
stimulating agents (ESA). While ATRA required CMS to reduce the payment rate it
did not specify the amount of the reduction, but instead to factor in the
decline in the use of these drugs and the current price of the drugs. The
National Kidney Foundation (NKF) understands CMS is required by law to reduce
the payment rate. However, NKF is concerned about the impact that this large of
a cut may have on patient care across the country.
Currently, across all dialysis
providers, Medicare profit margins are only 3-4 percent (as estimated by the
Medicare Payment Advisory Committee – MEDPAC). Since CMS is proposing a 9.4
percent cut to the base rate for Medicare payments, most providers will have to
make considerable changes in how they operate in order to cover the most basic
costs of care. NKF is concerned that some providers may not be able to withstand
cuts and will have to close facilities and that many others may have to
eliminate patient-focused programs, services, and benefits that improve
patients’ health and quality of life. Rather than wait and see how dialysis
facilities respond to the cuts, we hope that Congress and CMS will engage in a
meaningful dialogue with dialysis providers, patient groups, professionals, and
others involved in caring for patients to identify ways to reduce the proposed
cuts while still complying with the law.
Also included in this proposed rule are
a number of changes to the Medicare ESRD Quality Incentive Program (QIP) that if
finalized would impact Medicare payments in 2016. The QIP is a provider penalty
program that has been in place since 2012. Dialysis facilities can receive a 0-2
percent reduction in Medicare payments for not meeting the specified quality
measures. Each year CMS makes changes to the program to add, remove, or revise
quality measures based on new standards of care, or the availability of new
data. CMS is proposing to include five new measures that facilities will start
being measured on in 2014.
These include:
◾The
percentage of in-center and home dialysis patients with hypercalcemia (a serum
calcium level above 10.2%)
◾The
percentage of hemodialysis (including home) patients with a bloodstream
infection
◾The
percentage of dialysis patients that the facility states have been educated and
advised on the risks, benefits and options for anemia
treatment
◾A
requirement to report on iron therapy for all pediatric
patients
◾A
requirement to report certain health related conditions that each dialysis
patient has. These conditions include heart disease, hypertension, diabetes,
drug and alcohol dependence, tobacco use as well as
others.
If finalized, these five measures will
be in addition to the six that are currently being
measured.
Given the proposed 9.4 percent cut to
dialysis payments in 2014, we note that for many facilities implementing
strategies to achieve some of these quality measures may be particularly
challenging. However, NKF believes quality measurement is an important way to
drive improvement in the quality of care patients receive. As we continue to
review the proposed regulation, we will consider the impact of the proposed
changes to dialysis payment and to the QIP on patient care and provide
recommendations to CMS before the agency issues a final rule. As we prepare
these recommendations we will call on many of our patient and professional
volunteers to weigh in as the experts. Comments are due to CMS August 30, 2013
and we will be sure to share with your our final comment letter and activities
around this proposed rule.
HERE
IS A LINK TO PROTEST THE MEDICARE CUTS TO DIALYSIS CENTERS, ALL YOU HAVE TO DO
IS FOLLOW THE LINK AND FILL IN THE INFO. TAKES 5 MINS! ACT
NOW!!!!!!
https://www.votervoice.net/KCP/Campaigns/32857/Respond
HERE
IS A PETITION TO PROTEST THE MEDICARE CUTS TO DIALYSIS CENTERS, PLEASE SIGN AND
SHARE!!!!
https://www.change.org/petitions/center-for-medicaid-and-medicare-services-cms-withdraw-the-proposed-cuts-to-dialysis-centers-and-esrd-patients?utm_campaign=share_button_action_box&utm_medium=facebook&utm_source=share_petition
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KIDNEY STORIES: DIALYSIS PATIENT CITIZENS WEBINAR: PRESENTING THE LEGISLATIVE AGENDA FOR AMERICAN SOCIETY OF NEPHOLOGY
KIDNEY STORIES: THIS IS A RECORDING OF A WEBINAR WITH DIALYSIS PATIENT CITIZENS ON ADVOCATING FOR KIDNEY AWARENESS ON SOCIAL MEDIA. DONE ON 4/11/2013. CHECK IT OUT, IT'S PRETTY COOL.
KIDNEY STORIES: BELOW IS A FILE OF A RECORDING FROM THE DPC WEBINAR ON HOW TO THROW AN EVENT
seminar_from_dpc_about_how_to_throw_an_event.mp3 | |
File Size: | 79652 kb |
File Type: | mp3 |
KIDNEY STORIES: THE RISING NEED FOR LIVING DONORS
Breaking
away from ‘the machine’: The rising need for living kidney
donors
Sandra Driscoll undergoes dialysis on March
8 at the Broadway location of Northwest Kidney Centers. A self-described “news
junkie,” Driscoll often catches up on the evening news, “The Daily Show” and
“The Colbert Report” during the four-hour process. Photo courtesy of Sandra
Driscoll
By
Sheridan Smalley
Three times a week, for four-hour shifts, Queen Anne resident Sandra Driscoll
heads to what she jokingly calls her “part-time job”: undergoing dialysis at her
local treatment center.
At 62, Driscoll is one of 95,459 individuals in the United States on the
waiting list for a kidney transplant — 1,570 in Washington state alone,
according to data from the Organ Procurement and Transplantation Network, which
is operated by the United Network for Organ Sharing.
“If I think about it a lot, it’s both scary and sobering,” Driscoll said,
“but I don’t walk around thinking about it like that all the time.”
With March 14 designated World Kidney Day and April as National Donate Life
Month, the need for donors is as great as ever. For patients like Driscoll with
complete kidney failure, a transplant is often the best option. But even for
those who qualify, there are simply too few donors, and patients and experts
alike stress the shortage of living donors in particular.
“There is a serious need,” said Paige Kayihan, independent donor advocate for
the University of Washington Living Kidney Donation program.
According to statistics released by the Organ Procurement and Transplantation
Network, in 2012, there were just 13,041 kidney donors nationwide. More than
half of these donors (7,421) were deceased. In Washington state, the number of
donors was just 285 — 60 percent of whom were deceased.
“It’s important for people like Sandra to get out there and tell their story
and find a living donor if they can, because there’s not enough deceased donor
kidneys to go around,” said Linda Sellers, public-relations manager of Northwest
Kidney Centers, the nonprofit dialysis provider that serves Driscoll.
Rare donations
The long-term prospects are much better for recipients who have a living
rather than deceased donor. According to Organ Procurement and Transplantation
Network data, survival percentages are consistently higher for those receiving
live-donor kidney transplants. The latest five-year survival rate — defined as
the number of individuals functioning and alive — for recipients who had a
deceased donor is 66.6 percent, vs. 79.8 percent for those who underwent a
living-donor transplant.
Of the living donors who do come forward, Kayihan said, the high majority
designates the recipient to whom they wish to donate. But for those like
Driscoll, who are unable to find a match among family or friends, the ideal is
to find an anonymous living donor, or “non-directed” donor. Such individuals are
difficult to come by.
“It’s rare, but very hugely heartwarming,” Sellers said. “Donating a kidney
is always unusual, so a smaller subset is people who are willing to give a
kidney without knowing who is going to get it.”
George Taniwaki, 53, is one such living, non-directed donor. In 2010, he
donated one of his kidneys through the University of Washington Medical Center,
inspired to do so after reading a 2007 article detailing the growing trend
toward non-directed donors.
“I said, ‘Oh, I can do that,’ ” Taniwaki said.
The process for a non-directed donor, Kayihan said, begins with a series of
medical and psychological tests to determine whether the individual is both
physically and emotionally healthy enough to donate. Receiving approval can take
months. Financial costs to the donor are typically transportation expenses and
lost wages for time off work, with the recipient’s insurance typically covering
all other medical costs.
“It’s a major decision,” Kayihan said. “People have to be very comfortable
with it.”
Once a donor is approved, medical-center representatives search for a match,
generally a patient from their center who is listed on the national registry.
According to the National Kidney Foundation, this list is prioritized mainly by
the amount of time a candidate has been waiting, as well as other factors such
as blood type and immune-system activity.
After a match is found, the actual surgery typically requires a two- to
four-night stay in the hospital, as well as a four- to six-week recovery period.
Although the procedure can frequently be done laparoscopically, Kayihan
emphasized that it is indeed a major surgery. She and Taniwaki agreed that this
fact, combined with lack of awareness, likely accounts for the low number of
non-directed living donors.
“Outcomes are good,” Kayihan said, “but there are risks.”
Following the procedure, there are opportunities for non-anonymous
communication between donor and recipient if both parties agree. In Taniwaki’s
case, like many others, he does not know who received his kidney. Over two years
after surgery, he said he feels “fine” and does not regret his decision, a
common reaction of living donors; according to the National Kidney Foundation,
studies have reported that less than 1 percent of living donors regret their
choice.
“I’m very happy with it, and I would do it again,” Taniwaki said, “but, you
know, I only have one kidney left so I can’t.”
‘Extraordinary gifts’
If Driscoll is able to find a donor, it will not be her first transplant. In
her mid-20s, she was diagnosed with Type I diabetes, a disease that eventually
led directly to the failure of her kidneys and pancreas, as well as substantial
vision loss in 1992. That time, Driscoll luckily waited only about five weeks
before receiving the call that a compatible donor was found.
“It was the happiest day I can remember,” Driscoll said. “I’ve had some great
days — don’t get me wrong — but it was pretty extraordinary.”
At age 41, Driscoll, thus, underwent her first kidney and pancreas
transplant, receiving organs from a deceased donor. That “extraordinary gift,”
she said, allowed her to lead a fulfilling law career and contribute as a
volunteer for numerous local organizations.
But donated organs do not last forever, Driscoll said. After 17 years, her
pancreas failed, followed by her kidney two years later, in 2011. This time, the
average waiting period for someone with Driscoll’s blood type (O) is four to
five years, of which she has been waiting about 16 months.
“The waiting time 21 years ago was a lot less, dramatically less,” Driscoll
explained. “There’s just a substantially higher demand and, yet, not a dramatic
increase in donors.”
According to Sellers, chronic kidney disease is up 30 percent in the last
decade. The main cause, Sellers said, is typically diabetes, as well as high
blood pressure, with the obesity epidemic a contributing factor to the rise.
The donor shortage puts the waiting time for a kidney at up to about five
years in King County, Sellers said. For those who wait, dialysis is the only
treatment option, which can be performed either at a center or at home. The
process essentially mimics kidney function and, although not painful, Driscoll
said, leaves her feeling exhausted.
“It’s literally that machine that keeps you alive,” Driscoll said, who
credits the support of family and friends for her ability to still enjoy
life.
The gift of life
The condition of patients who receive dialysis varies entirely by the
individual, Sellers said. Some are able to thrive; others are more sick and
frail. All are expected to follow a strict diet and regimen of immunosuppressant
drugs, as well as severely limit their fluid intake.
For Driscoll, the greatest change is in her level of energy, which causes a
lack of spontaneity.
“I think I just do less of things,” Driscoll explained. “You make do with
wherever you are at the moment, so I still get out and do the things I like. I
just don’t do it as much and, once in a while, have to cancel.”
When talking about the future, however, Driscoll shines with optimism. If she
were to receive a transplant, she plans on getting back into volunteering and
mostly just hopes to “feel good again.”
“I think I can just get back to being really active, and hanging out more
with family and friends, and traveling, and just not waking up in the morning
tired. And I can eat,” she said, with a laugh.
“They call it the gift of life, and that’s what it is, literally, is giving
me life again. I mean I’m alive now and doing things, but again, it’s because of
the wondrous machine. To get the kidney means I don’t have to rely on that
machine to remain alive, and that’s extraordinary, that’s absolutely
extraordinary.”
For those interested in becoming a non-directed donor or learning more
about the process, contact the UW Living Kidney Donation program at (206)
598-3627 or visit www.uwmedicine.org/kidney.
http://www.queenannenews.com/main.asp?SectionID=26&SubSectionID=337&ArticleID=33955.
away from ‘the machine’: The rising need for living kidney
donors
Sandra Driscoll undergoes dialysis on March
8 at the Broadway location of Northwest Kidney Centers. A self-described “news
junkie,” Driscoll often catches up on the evening news, “The Daily Show” and
“The Colbert Report” during the four-hour process. Photo courtesy of Sandra
Driscoll
By
Sheridan Smalley
Three times a week, for four-hour shifts, Queen Anne resident Sandra Driscoll
heads to what she jokingly calls her “part-time job”: undergoing dialysis at her
local treatment center.
At 62, Driscoll is one of 95,459 individuals in the United States on the
waiting list for a kidney transplant — 1,570 in Washington state alone,
according to data from the Organ Procurement and Transplantation Network, which
is operated by the United Network for Organ Sharing.
“If I think about it a lot, it’s both scary and sobering,” Driscoll said,
“but I don’t walk around thinking about it like that all the time.”
With March 14 designated World Kidney Day and April as National Donate Life
Month, the need for donors is as great as ever. For patients like Driscoll with
complete kidney failure, a transplant is often the best option. But even for
those who qualify, there are simply too few donors, and patients and experts
alike stress the shortage of living donors in particular.
“There is a serious need,” said Paige Kayihan, independent donor advocate for
the University of Washington Living Kidney Donation program.
According to statistics released by the Organ Procurement and Transplantation
Network, in 2012, there were just 13,041 kidney donors nationwide. More than
half of these donors (7,421) were deceased. In Washington state, the number of
donors was just 285 — 60 percent of whom were deceased.
“It’s important for people like Sandra to get out there and tell their story
and find a living donor if they can, because there’s not enough deceased donor
kidneys to go around,” said Linda Sellers, public-relations manager of Northwest
Kidney Centers, the nonprofit dialysis provider that serves Driscoll.
Rare donations
The long-term prospects are much better for recipients who have a living
rather than deceased donor. According to Organ Procurement and Transplantation
Network data, survival percentages are consistently higher for those receiving
live-donor kidney transplants. The latest five-year survival rate — defined as
the number of individuals functioning and alive — for recipients who had a
deceased donor is 66.6 percent, vs. 79.8 percent for those who underwent a
living-donor transplant.
Of the living donors who do come forward, Kayihan said, the high majority
designates the recipient to whom they wish to donate. But for those like
Driscoll, who are unable to find a match among family or friends, the ideal is
to find an anonymous living donor, or “non-directed” donor. Such individuals are
difficult to come by.
“It’s rare, but very hugely heartwarming,” Sellers said. “Donating a kidney
is always unusual, so a smaller subset is people who are willing to give a
kidney without knowing who is going to get it.”
George Taniwaki, 53, is one such living, non-directed donor. In 2010, he
donated one of his kidneys through the University of Washington Medical Center,
inspired to do so after reading a 2007 article detailing the growing trend
toward non-directed donors.
“I said, ‘Oh, I can do that,’ ” Taniwaki said.
The process for a non-directed donor, Kayihan said, begins with a series of
medical and psychological tests to determine whether the individual is both
physically and emotionally healthy enough to donate. Receiving approval can take
months. Financial costs to the donor are typically transportation expenses and
lost wages for time off work, with the recipient’s insurance typically covering
all other medical costs.
“It’s a major decision,” Kayihan said. “People have to be very comfortable
with it.”
Once a donor is approved, medical-center representatives search for a match,
generally a patient from their center who is listed on the national registry.
According to the National Kidney Foundation, this list is prioritized mainly by
the amount of time a candidate has been waiting, as well as other factors such
as blood type and immune-system activity.
After a match is found, the actual surgery typically requires a two- to
four-night stay in the hospital, as well as a four- to six-week recovery period.
Although the procedure can frequently be done laparoscopically, Kayihan
emphasized that it is indeed a major surgery. She and Taniwaki agreed that this
fact, combined with lack of awareness, likely accounts for the low number of
non-directed living donors.
“Outcomes are good,” Kayihan said, “but there are risks.”
Following the procedure, there are opportunities for non-anonymous
communication between donor and recipient if both parties agree. In Taniwaki’s
case, like many others, he does not know who received his kidney. Over two years
after surgery, he said he feels “fine” and does not regret his decision, a
common reaction of living donors; according to the National Kidney Foundation,
studies have reported that less than 1 percent of living donors regret their
choice.
“I’m very happy with it, and I would do it again,” Taniwaki said, “but, you
know, I only have one kidney left so I can’t.”
‘Extraordinary gifts’
If Driscoll is able to find a donor, it will not be her first transplant. In
her mid-20s, she was diagnosed with Type I diabetes, a disease that eventually
led directly to the failure of her kidneys and pancreas, as well as substantial
vision loss in 1992. That time, Driscoll luckily waited only about five weeks
before receiving the call that a compatible donor was found.
“It was the happiest day I can remember,” Driscoll said. “I’ve had some great
days — don’t get me wrong — but it was pretty extraordinary.”
At age 41, Driscoll, thus, underwent her first kidney and pancreas
transplant, receiving organs from a deceased donor. That “extraordinary gift,”
she said, allowed her to lead a fulfilling law career and contribute as a
volunteer for numerous local organizations.
But donated organs do not last forever, Driscoll said. After 17 years, her
pancreas failed, followed by her kidney two years later, in 2011. This time, the
average waiting period for someone with Driscoll’s blood type (O) is four to
five years, of which she has been waiting about 16 months.
“The waiting time 21 years ago was a lot less, dramatically less,” Driscoll
explained. “There’s just a substantially higher demand and, yet, not a dramatic
increase in donors.”
According to Sellers, chronic kidney disease is up 30 percent in the last
decade. The main cause, Sellers said, is typically diabetes, as well as high
blood pressure, with the obesity epidemic a contributing factor to the rise.
The donor shortage puts the waiting time for a kidney at up to about five
years in King County, Sellers said. For those who wait, dialysis is the only
treatment option, which can be performed either at a center or at home. The
process essentially mimics kidney function and, although not painful, Driscoll
said, leaves her feeling exhausted.
“It’s literally that machine that keeps you alive,” Driscoll said, who
credits the support of family and friends for her ability to still enjoy
life.
The gift of life
The condition of patients who receive dialysis varies entirely by the
individual, Sellers said. Some are able to thrive; others are more sick and
frail. All are expected to follow a strict diet and regimen of immunosuppressant
drugs, as well as severely limit their fluid intake.
For Driscoll, the greatest change is in her level of energy, which causes a
lack of spontaneity.
“I think I just do less of things,” Driscoll explained. “You make do with
wherever you are at the moment, so I still get out and do the things I like. I
just don’t do it as much and, once in a while, have to cancel.”
When talking about the future, however, Driscoll shines with optimism. If she
were to receive a transplant, she plans on getting back into volunteering and
mostly just hopes to “feel good again.”
“I think I can just get back to being really active, and hanging out more
with family and friends, and traveling, and just not waking up in the morning
tired. And I can eat,” she said, with a laugh.
“They call it the gift of life, and that’s what it is, literally, is giving
me life again. I mean I’m alive now and doing things, but again, it’s because of
the wondrous machine. To get the kidney means I don’t have to rely on that
machine to remain alive, and that’s extraordinary, that’s absolutely
extraordinary.”
For those interested in becoming a non-directed donor or learning more
about the process, contact the UW Living Kidney Donation program at (206)
598-3627 or visit www.uwmedicine.org/kidney.
http://www.queenannenews.com/main.asp?SectionID=26&SubSectionID=337&ArticleID=33955.
TAGS: the rising need for living donors, Ning, Live Journal, Tumblr, Weebly,
WordPress, Facebook, Kidney Stories, Jim Myers, kidney, dialysis, blood,
transfusion, donor, recipient, seeking, awareness, National Kidney Foundation,
Indiana University, sharing, kidney disease, End Stage Renal Failure, polycystic
kidney disease, chronic kidney disease, kidney for, diabetic, save my life,
living kidney donor, organ donation, find a kidney for, NCS, share a spare,
transplant list, fundraiser, donate life,
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transfusion, donor, recipient, seeking, awareness, National Kidney Foundation,
Indiana University, sharing, kidney disease, End Stage Renal Failure, polycystic
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KIDNEY STORIES: KIDNEY DISEASE BY THE NUMBERS
KIDNEY DISEASE BY THE NUMBERS
FROM THE NATIONAL KIDNEY DISEASE
FOUNDATION
·
26
MILLION ADULTS AR ESTIMATED TO HAVE CHRONIC KIDNEY DISEASE(CKD); MOST DON’T KNOW
THEY HAVE IT BECAUSE EARLY SIGNS ARE OFTEN
MISSED
·
2,492,040
MEDICARE PATIENTS ARE ESTIMATED TO HAVE CKD, BUT NOT KIDNEY
FAILURE
·
594,
374 AMERICANS HAVE IRREVERSIBLE KIDNEY FAILURE OR END STAGE RENAL DISEASE (ESRD)
AND REQUIRE DIALYSIS OR A KIDNEY TRANSPLANT TO
SURVIVE
·
415,013
ESRD PATIENTS RECEIVE DIALYSIS 3 TIMES PER WEEK TO REPLACE KIDNEY FUNCTION
(USUALLY 4 HOURS AT A TIME, MY ADDITION)
·
179,
631 AMERICANS LIVE WITH A FUNCTIONING KIDNEY
TRANSPLANT
·
87,460
PERSONS WITH ESRD DIE ANNUALLY
·
16,485
AMERICANS RECEIVED A KIDNEY TRANSPLANT IN 2012
·
95,474
AMERICANS WERE ON THE KIDNEY TRANSPLANT WAITING LIST AS OF MARCH 8,
2013
·
OF
ESRD PATIENTS, 40% HAD A PRIMARY DIAGNOSIS OF DIABETES, THE LEADING CAUSE OF
ESRD
FROM THE NATIONAL KIDNEY DISEASE
FOUNDATION
·
26
MILLION ADULTS AR ESTIMATED TO HAVE CHRONIC KIDNEY DISEASE(CKD); MOST DON’T KNOW
THEY HAVE IT BECAUSE EARLY SIGNS ARE OFTEN
MISSED
·
2,492,040
MEDICARE PATIENTS ARE ESTIMATED TO HAVE CKD, BUT NOT KIDNEY
FAILURE
·
594,
374 AMERICANS HAVE IRREVERSIBLE KIDNEY FAILURE OR END STAGE RENAL DISEASE (ESRD)
AND REQUIRE DIALYSIS OR A KIDNEY TRANSPLANT TO
SURVIVE
·
415,013
ESRD PATIENTS RECEIVE DIALYSIS 3 TIMES PER WEEK TO REPLACE KIDNEY FUNCTION
(USUALLY 4 HOURS AT A TIME, MY ADDITION)
·
179,
631 AMERICANS LIVE WITH A FUNCTIONING KIDNEY
TRANSPLANT
·
87,460
PERSONS WITH ESRD DIE ANNUALLY
·
16,485
AMERICANS RECEIVED A KIDNEY TRANSPLANT IN 2012
·
95,474
AMERICANS WERE ON THE KIDNEY TRANSPLANT WAITING LIST AS OF MARCH 8,
2013
·
OF
ESRD PATIENTS, 40% HAD A PRIMARY DIAGNOSIS OF DIABETES, THE LEADING CAUSE OF
ESRD
TAGS: kidney disease by the numbers, Ning, Live Journal, Tumblr, Weebly, WordPress,
Facebook, Kidney Stories, Jim Myers, kidney, dialysis, blood, transfusion,
donor, recipient, seeking, awareness, National Kidney Foundation, Indiana
University, sharing, kidney disease, End Stage Renal Failure, polycystic kidney
disease, chronic kidney disease, kidney for, diabetic, save my life, living
kidney donor, organ donation, find a kidney for, NCS, share a spare, transplant
list, fundraiser, donate life,
Facebook, Kidney Stories, Jim Myers, kidney, dialysis, blood, transfusion,
donor, recipient, seeking, awareness, National Kidney Foundation, Indiana
University, sharing, kidney disease, End Stage Renal Failure, polycystic kidney
disease, chronic kidney disease, kidney for, diabetic, save my life, living
kidney donor, organ donation, find a kidney for, NCS, share a spare, transplant
list, fundraiser, donate life,