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.