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Author Topic: Kidney Patients & Physicians Team-Up for Hill Day Visits  (Read 3911 times)
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"Still crazy after all these years."

« on: June 20, 2012, 12:46:08 PM »

Kidney Patients & Physicians Team-Up for Hill Day Visits

Tampa, FL, June 12, 2012 – On Monday, June 11, the American Association of Kidney Patients (AAKP) partnered with the Renal Physicians Association (RPA) for joint Hill Day Visits. AAKP patient volunteers and nephrologists with RPA met with staff members of the House of Representatives and the U.S. Senate to raise awareness of kidney disease.

An estimated 26 million Americans suffer from chronic kidney disease, including more than 400,000 individuals who suffer from complete renal failure. The most common cause of kidney disease is diabetes and hypertension. Without dialysis or a kidney transplant, patients suffering from kidney failure will not survive. Since transplant organs are in short supply, most patients must undergo dialysis treatment, a process that substitutes for healthy kidneys by mechanically filtering body wastes and excess fluids from the bloodstream, 3-4 times per week.

AAKP patient volunteers discussed three key issues with congressional staff members:

 ... Medicare coverage of immunosuppressive drugs for the life of a transplanted kidney - currently many kidney transplant recipients lose their Medicare coverage 36 months after receiving a transplant. In some cases these individuals are then unable to afford the cost of anti-rejection medications. AAKP Medicare coverage of immunosuppressive drugs for the life of the kidney is will protect the long term interest of the American taxpayers through greater cost savings while simultaneously improving health outcomes kidney transplant recipients and lowering the incidents of organ rejections.

 ... Unintended consequences of erythropoietin stimulating agent (ESA) policy changes – recent data shows the rate of blood transfusions (an alternate treatment for anemia) among kidney patients has increased significantly since the introduction of the revised label and Centers for Medicare and Medicaid Services (CMS) policy changes. Blood transfusions can jeopardize candidates for transplants from receiving a new kidney. AAKP strongly adheres to the principle that a physician and patient must be permitted to formulate a care plan best suited for that patient.

 ... Provide appropriate coverage for intensive dialysis therapies – more frequent dialysis has been shown to improve blood pressure, lead to fewer hospitalizations, lessen nutritional restrictions and increase overall quality of life.

“I believe our visits were well received,” stated AAKP Executive Director Karen Ryals. “Congressional staff members heard directly from the individuals who are affected by these policies and the impact these policies have on their lives. We are also encouraged that more House and Senate Members will sign on to S. 1454 and H.R. 2969, the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patient Act of 2011. And we’re encouraged that more House members will join the Congressional Kidney Caucus.”

AAKP is hosting its 2nd Annual National Public Policy Summit at The Carter Center in Atlanta, GA, August 10th, 2012 in conjunction with the AAKP Annual Meeting which takes place August 9-11 at the Grand Hyatt Atlanta in Buckhead. This is a non-partisan event. AAKP aims to more fully engage kidney patients, and those who may someday become kidney patients, in the formulation of national policy decisions that impact their lives. For more information about the AAKP Annual Patient Meeting, visit www.aakp.org or call 1-800-749-2257.

AAKP is the voluntary, patient organization, which for more than 40 years, has been dedicated to improving the lives of fellow kidney patients and their families by helping them deal with the physical, emotional and social impact of kidney disease. The programs offered by AAKP inform and inspire patients and their families to better understand their condition, adjust more readily to their circumstances, and assume more normal, productive lives in their communities.

Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
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« Reply #1 on: December 22, 2012, 07:02:01 AM »

Had a transplant 40 years ago and now have cancer stage IV. Financial devastation because the 36 month law does not believe I have End Stage Renal Disease... AGAIN. How much more END STAGE is my renal disease government?

God Bless Papadel
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