DOES THE PROPOSED CUTS FROM CMS TO DIALYSIS IN PATIENT CENTERS AFFECT HOME HEMO AND PERITONEAL PATIENTS? As many of you know, I have been advocating against the proposed cuts to Medicare payments to dialysis centers and in turn the affect this has in all in center patients, including both Medicare patients as well as private insurance patients. Obviously a reduction in payments to centers could result in a cutting of services, a layoff of valuable dialysis employees like techs, nurses and social workers, the possible closing of centers, and the shuffling and relocation of dialysis patients to different centers. There has also been expressed that dialysis on demand may be in jeopardy as a possible return to dialysis by committee selection. Most of my in center dialysis friends have gotten the message and are taking steps to make their objections known. Where some resistance in the dialysis community remains is with people that take dialysis at home, either home hemo or peritoneal dialysis. The general remark that is made is that since the cuts do not affect home dialysis patients, this is not our fight. I wrote the Dialysis Patient Citizens asking if these cuts affect home dialysis patients and here is the response I received: “STATEMENT FROM THE ALLIANCE FOR HOME DIALYSIS: December 3, 2012 Dear Member of Congress: As you consider solutions to address the economic challenges facing the country, the Alliance for Home Dialysis urges you to protect Medicare beneficiaries’ access to home dialysis by refraining from making any additional payment reductions to the Medicare End Stage Renal Disease (ESRD) Prospective Payment for dialysis. The Alliance for Home Dialysis is a coalition of kidney dialysis stakeholders, representing patients, clinicians, providers and industry, that have come together to promote activities and policies that will facilitate treatment choice in dialysis care while addressing systematic barriers that limit access for patients and their families to the many benefits of home dialysis. Congress has long recognized the importance of ensuring beneficiaries have access to a choice of modalities, which include peritoneal dialysis (PD) and home hemodialysis (HHD), because they offer some patients significant quality of life advantages, including clinically meaningful improvements in physical and mental health. The Alliance is concerned that reductions to the ESRD Prospective Payment System (PPS) could jeopardize Medicare beneficiaries’ access to home dialysis. (Emphasis added). The implementation of the new ESRD bundled payment—the first value-based purchasing program under Medicare—has been successful in making progress towards one of its stated goals i.e., to “encourage patient access to home dialysis” 1 and to “make home dialysis economically feasible and available to the ESRD patient population.” 2 Today, only about 10% of U.S. dialysis patients receive treatment at home. Yet, the most recent annual survey of the ten largest providers found that between 2010-2012 home patients represented about 20% of the growth in ESRD patients. This is significant given that in years prior there had been little growth in home dialysis. We are concerned that payment reductions risk reversing the progress that has been made toward increasing access to home dialysis, as facilities may not be able to invest in the development and ongoing management of home dialysis programs . Dialysis facilities were already subject to a two percent payment reduction under the new bundled payment and are facing a two percent cut through sequestration next year. Because nearly 80% of dialysis patients are Medicare beneficiaries, facilities do not have the same ability to spread costs to other payers as broadly as other Medicare providers. Most importantly, the ESRD PPS system is still in its infancy, with full implementation not taking effect until 2014. More experience with the system is necessary to understand the full impact of the program before any fundamental changes are made. (Emphasis added). 1 75 Fed. Reg. 49,030, 49,058 (Aug. 12, 2010). 2 Id . at 49,060. Congress should maintain its commitment to the approximately 400,000 Americans on kidney dialysis by preserving current payment rates and ensuring continued access to home dialysis. (Emphasis added). If you have any questions or need additional information, please contact Lindsay Punzenberger at [email protected] or 202-466-4721. For a list of organizations participating in the Alliance’s working groups, please visit our website at www.homedialysisalliance.org . Sincerely, Stephanie Silverman Director” In other word, the Home Dialysis Alliance fears these cuts like the proposed cuts by the CMS will have an effect on both their Medicare patients and programs for home dialysis, which are sponsored by dialysis centers like Fresenius and DaVita. As I am reading this response, if you, your loved one, friends or family are on home dialysis, these cuts affect you, too. Please sign and share this petition: https://www.change.org/petitions/center-for-medicaid-and-medicare-services-cms-withdraw-the-proposed-cuts-to-dialysis-centers-and-esrd-patients To write a short form letter, go here: http://www.capwiz.com/dpcitizens/issues/alert/?alertid=62734766&PROCESS=Take+Action To make a scripted call to your Congressperson/Senators, go here: http://www.capwiz.com/dpcitizens/callalert/index.tt?alertid=62762041 TAGS: home dialysis, Ning, Live Journal, Tumblr, Weebly, WordPress, Facebook, Kidney
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This is my son Jim and I having dinner earlier this week. He lives in Phoenix now so I value the time I get to spend with him. As many of you know, I am a ESRD/PKD/dialysis patient that relies on dialysis to stay alive. Polycystic Kidney Disease is an hereditary disease. In my family, I have lost a cousin, an uncle, 2 aunts and my father to PKD. PKD is the most life threatening of all of the most common life threatening genetic diseases. 600,000 of us in America are effected. There are 12.5 million children and adults world-wide affected with cysts on their kidneys that inevitably lead to kidney failure. The number of people who have PKD is greater that the combined number of people with cystic fibrosis, muscular dystrophy, hemophilia, sickle cell anemia, Down's Syndrome and Huntington's Disease. It is twice as common as MS and 20 times more common than CF. When your kidneys fail because of PKD, you have 3 choices: dialysis, transplant or death. Transplants are hard to come by and take time. I am on 3 waiting lists and the shortest time I have been quoted is 3 years and the longest is 6+. Death is what I am trying to avoid. I want to see my son grow up, progress in his career, (he works for the AZ Diamond backs in their PR department) get married, have children. I'd like to meet my grandchildren. I have to take dialysis 3x/week 4 hours a shot. I have to do this just to live. Without dialysis, I could die in as short as 3-5 days; at the outside maybe a month or two. Recently, the Center for Medical Services that runs Medicare and Medicaid in response to the cuts passed during the Fiscal Cliff, proposed cuts to dialysis centers, their services and to Medicare patients who rely on dialysis just like me to live. A 2% cut was expected. A 9.4% cut was proposed, amounting to a $970 million dollar cut. The Dialysis Patient Citizens, The National Kidney Foundation and the PKD Foundation all strongly objected. These devastating cuts would have a drastic effect on the medical care we receive at dialysis centers. These effects could include a loss of access to quality care, lead to lowering of the standard of care provided, layoffs of vital dialysis personnel like techs and nurses, cause of closure and consolidation of dialysis centers, and worse yet the rejection of Medicare dialysis patients, who make up 82% of all dialysis patients. Imagine driving several hundred miles a week to obtain life saving dialysis because the center 5 minutes from your home closed. The CMS knows these cuts are radical and dangerous. They have given members of the public until August 30th to object. All of the organizations that I belong to are urging you to contact your Congresspersons and Senators to register your objections. If we don't object the CMS will assume we don't care or the cuts are not harmful and after January 1, 2014, they will be implemented. You can use this link to send a letter: http://tinyurl.com/qet4zj2 . You can use this link to make a phone call: http://tinyurl.com/n46cfrp. You can write a letter. You can sign a petition: https://www.change.org/petitions/center-for-medicaid-and-medicare-services-cms-withdraw-the-proposed-cuts-to-dialysis-centers-and-esrd-patients. I am personally meeting with my local reps of my pols on this issue in the next two weeks. I have written a letter to the editor to my local and most large national newspapers and TV stations. I'm hitting the bloggers next (Daily Kos, Salon, Politico). I do this for my clinic mates that come in and leave everyday by ambulance, have diabetes, have lost mental acuity, are amputees, walk with walkers and canes, and just are not able to fight back or truly understand what is occurring. I do this for my son, my father, and my unborn grandchildren. Please use the links, write a letter, make a call or sign the petition. My son and I would like to keep having dinner together. TAGS: CMS, DPC, End, Facebook, Failure, Foundation, Indiana, Jim, Journal, Kidney,
Live, Medicare, Myers, NCS, National, Ning, PKD, Renal, Stage, Stories, Tumblr, University, Weebly, WordPress, a, awareness, blood, centers, chronic, cuts, diabetic, dialysis, disease, donate, donation, donor, find, for, fundraiser, kidney, life, list, living, my, organ, polycystic, recipient, save, seeking, share, sharing, spare, transfusion, transplant Does High Creatinine Level Mean Kidney Failure As of February 18, 2013 at 2:48 PM, there are 117,131 HOW TO WRITE A GOOD KIDNEY STORY-SHORT VERSION 1. Put the following in your About Section 2. Name 3. Where you are from (just City and State) people need to know this, the closer to you the easier to donate 4. Why you started this page 5. Ask them to push the Like Button, that way they get your updates 6. The nature of your illness and reason for your kidney failure 7. Any other illnesses that complicate your issues 8. Are you on a transplant list, if so the name and city, state of the transplant center(s) some people are listed at more than 1 9. Name, address, t/p# and email for your transplant coordinator 10. Your blood type (needs to match your donor) 11. Your personal reasons why this is important to you (family, school, freedom, your children, want your life back) 12. Anything else you want to include 13. Once you do that, every time you see a doctor or there is a change in your circumstances, update your page. 14. Try to post something every day 15. If you need help let me know. Send me an email or text me online. I help you write it or if you give me the info, I can write it with your permission. Let me know what happens. If you don't have all of these things yet that is OK. Answer what you can and say for example that you are seeking a good transplant center in your area. Your nephrologist can point you in the right direction. Hope that helps. All my best, Jim from Kidney Stories. https://www.facebook.com/KidneyStories My name is Jim Myers.
I have a page on FB I call Kidney Stories. I also have a website here where you can tell your story. Tell us if you have a Kidney Story to tell. Are you suffering from kidney disease? Is it your spouse, friend, or significant other? Are you a caregiver, medical professional, advocate? Are you on dialysis, on a waiting list, having a transplant soon, had your transplant? We want to hear your Kidney Story. Feel free to post it under the Stories Section of this website or blog about it right here. We want to help share your story to raise awareness for kidney donation, for educational purposes, to vent, to allow us to know what life for your is like. If you are looking for that living donor, been on dialysis, been transplanted, or are looking for a new transplant, we would like to hear your story. Success stories are a favorite! We know your Kidney Story does not stop with a transplant and there are in and outs to be shared. We help one, we help all. We want EVERYONE to tell their Kidney Story! http://www.app.com/article/20130302/NJNEWS/303020114/Sharing-caring http://www.app.com/videonetwork/2199931398001/A-kidney-donor-s-story Sharing, caring Diverse leaders join forces to get word out on need for, benefits of kidney donations LAKEWOOD — After reading a Facebook post from a friend about the miseries of dialysis, Sharon Langert knew her life was about to change. Leah Topas, 43, of Lakewood was suffering from a disease that caused scarring on both kidneys and put her on dialysis to remove impurities from her blood. Langert, a 44-year-old mother and social-media blogger who is married to Township Committeeman Steven Langert, decided to donate a kidney to her friend. But Topas had just found a match through Renewal, an organization that helps match kidney donors and recipients. She urged Langert to call Renewal if she still wanted to donate a kidney, because of the great need in the wider community. Topas had surgery in August 2011. Recipients far outnumber kidney donors. Most patients end up on dialysis, waiting for a kidney transplant, said Rabbi Menachem Friedman, program director of Renewal, a Brooklyn-based Orthodox-inspired organization with an office in Lakewood. Searching for donors The introduction pamphlet for the organization discusses the special needs of the Orthodox Jewish community that go beyond “the actual referral of physicians and facilities.” While keeping traditions in place, the organization uses modern means to accomplish its goal of finding kidney donors. Renewal uses social media, newspaper, magazine and Internet ads and email lists of religious organizations to educate and localize the donor search, said Friedman, of Lakewood. Several hospitals in the tri-state area do kidney transplants. Information is available from the National Kidney Foundation or through Renewal. People feel comfortable to talk about illness within their own community, Friedman said. He said he believes that is part of Renewal’s success rate. During the past six years, Renewal successfully matched more than 190 kidney donors with recipients, predominantly in the Orthodox community. Cuban-born Pastor Glenn Wilson of the Restoration Family Worship Center in Howell said he hopes the black and Latino communities in the area can benefit from education about kidney donation. The Lakewood resident’s knowledge of kidney disease is personal. Kidney stones prevented Wilson from donating to his son, Robert, 29, who was near death and on dialysis, facing a six-year wait for a kidney. Robert’s younger brother, Glenn Jr., 25, donated instead. After reading an Asbury Park Press story about Wilson’s family ordeal with kidney disease and after seeing his wife’s sacrifice, Committeeman Langert led a recognition ceremony at the Feb. 7 Township Committee meeting, in which 16 donors, including Wilson Jr. and Sharon Langert, were honored, along with Renewal. After learning of Renewal at the township meeting, Wilson hopes to use the Renewal model. Friedman and Wilson met Wednesday and now are teaming up. “We have two kidneys, and medically we could live with one,” Wilson said. “When one person in your family is ill, the whole family is ill.” Like birds of a feather, people suffering from a disease gravitate to each other. Wilson said he knows of many large families who have a member on dialysis, but have little knowledge about kidney donation. He believes fear from misguided religious beliefs and a lack of education prevents them helping each other. He wants to help the highest impacted population of kidney failure. There are no costs passed on to a donor for testing or surgery, Wilson said. Insurance, including Medicare, pays all donor costs, Wilson said. Many people do not know that, he said. Friedman added: “Kidney failure is like a slow, long death.” “We chose to focus on the donor,” because it is harder to find donors than recipients, Friedman said. “We are not looking to push people to donate. We are looking to educate and inspire. People need to relate to someone that they trust.” Though Sharon Langert was tested by Renewal to donate, it took several months before they called and told her about 34-year-old Orly Tyler, a Brooklyn mother in need of a kidney. Langert knew it was time. “I could empathize with that. I am a mother,” Sharon Langert said. “I really felt I was meant to do it,” she said. “The night before, my husband said I could change my mind. And I knew that I couldn’t, because this kidney was no longer mine. I was meant to nurture it in my body to help someone else.” Two weeks after the surgery, she was caring for her family, shopping and working on her fashion blog. “It was amazing that I could do that,” Langert said. Lois Sutton, 58, of Tinton Falls said it was bittersweet, learning her 19-year-old son, Albert, was a perfect match for her sick 58-year-old husband, Sam, who needed a kidney and was on dialysis for a month. Only one family member, the couple’s son who was studying in Israel, tested as a good match. “Dialysis was a horror,” Lois Sutton said. And yet, Albert “is my baby.” The family turned to Renewal, which helped the young man independently from his father. The surgery was done in July, with a good outcome. “My heart went up and down. I don’t think I have thoroughly processed this yet,” she said. Steven C. Rubin, 68, lives in Ocean Township and is a municipal prosecutor in Monmouth County. Every night his wife, who is a nurse, starts his 10-hour dialysis. It is not easy to conceal the disease and the quality of life lost to being hooked to a machine every night, he said. Rubin learned about Renewal and is hopeful of finding a possible match. “I am amazed by the number of people who are in the position I am in,” he said. |
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