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
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.
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