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Author Topic: Ask your Representative to Extend Immunosuppressive Drug Coverage  (Read 7123 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: April 30, 2009, 05:27:28 PM »

Build Support in the House of Representatives to Extend Immunosuppressive Drug Coverage
Ask your Representative to Extend Immunosuppressive Drug Coverage    

Take Action! http://capwiz.com/kidney/issues/alert/?alertid=13252856&queueid=[capwiz:queue_id]
 
Help us help people with kidney transplants!  Ask your Representative to co-sponsor HR 1458, legislation that would extend Medicare coverage of  immunosuppressive drugs beyond the first 36 month after transplant.  This legislation is one of the key provisions in the NKF End the Wait! Campaign.  The bill will help transplant recipients maintain their kidney function, and will allow others to consider a transplant because they know the expensive drugs they need will be available without a time limitation. 

Organ transplant recipients must take immunosuppressive drugs for the life of the transplant to help prevent the body from rejecting the organ.  Currently, Medicare pays for most kidney transplants but covers drugs for only 36 months post-transplant as part of the Medicare ESRD benefit. After that, kidney recipients must pay for immunosuppressive drugs through private insurance, public or pharmaceutical programs or pay out-of-pocket.  (Medicare covers drugs without a time limit if the patient qualifies because of age or disability status.) 

Immunosuppressive drugs are expensive, but the alternative is even more costly.  Medicare spends an average of  $17,000 annually per transplant patient.  If the kidney transplant fails, the person returns to dialysis at which point, Medicare spends an average of $71,000 per year on a dialysis patient.  And quality of life often suffers too. 
 
Please take a moment to write your Representative today and ask him or her to co-sponsor HR 1458.  Share your story, or the story of a loved one, about the experience with immunosuppressive drug coverage.  Thank you!

« Last Edit: April 30, 2009, 05:34:45 PM by okarol » Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Zach
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"Still crazy after all these years."

« Reply #1 on: April 30, 2009, 09:02:21 PM »

 :2thumbsup;
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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."
Bill Peckham
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« Reply #2 on: May 01, 2009, 11:44:25 AM »

And the cost of those who don't pursue a transplant because of the 3 year limit
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
paul.karen
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« Reply #3 on: May 01, 2009, 11:52:10 AM »

 :thumbup;
Done and thx.

last time you put one of these up for Organ donation month i could reply to both dems and repubs.  This time i could only reply to one of them.

last month after i emailed my congressman (thx to you) i noticed he was running commercials all month.  I realize it wasnt due to me.  But 9it made me feel good to see the commercials.
Thx for all you do again Karol.........
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
rookiegirl
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« Reply #4 on: May 01, 2009, 07:41:49 PM »

I sent my 2 weeks ago and received a reply email back from my Congressman's office stating they have received my email and will review.  I wonder if I should do it again.  Just because its that IMPORTANT.

RG
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2000-Diagnosed IGA Nephropathy
2002-1st biopsy (complications)
2004-2nd biopsy
10/03/07-Tenckhoff Catheter Placement
10/22/07-Started Peritoneal Dialysis
03/2008-Transplant team meeting
04/2008-Transplant workup
05/2008-Active Transplant list
3/20/09-Cadaver Kidney Transplant
4/07/09-Tenckhoff Catheter removed
4/20/09-New kidney biopsy
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #5 on: June 18, 2009, 11:03:55 AM »

Just got this email:

Dear Mrs. Franks:

 

Thank you for contacting me to express your support for the "Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2009." I appreciate hearing from you and welcome the opportunity to respond.

 

On March 10, 2009, Senator Richard Durbin (D-IL) introduced the "Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act" (S. 565). This bill would provide continued coverage for immunosuppressive drugs for beneficiaries under the Medicare program that have received a kidney transplant, and whose coverage would otherwise expire. This bill has been referred to the Senate Committee on Finance, of which I am not a member. Please know that I will keep your support in mind should this legislation come before me in the Senate.

 

Again, thank you for contacting me. If you have any further comments or questions, please feel free to contact my Washington, D.C. office at (202) 224-3841. Best regards.

Sincerely yours, Dianne Feinstein
        United States Senator

Further information about my position on issues of concern to California and the Nation are available at my website http://feinstein.senate.gov/public/. You can also receive electronic e-mail updates by subscribing to my e-mail list at http://feinstein.senate.gov/public/index.cfm?FuseAction=ENewsletterSignup.Signup.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
rookiegirl
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« Reply #6 on: June 18, 2009, 01:54:40 PM »

I received 2 days ago a letter from the office of Richard Burr stating he too is for the extention of immunosuppressive drug coverage.
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2000-Diagnosed IGA Nephropathy
2002-1st biopsy (complications)
2004-2nd biopsy
10/03/07-Tenckhoff Catheter Placement
10/22/07-Started Peritoneal Dialysis
03/2008-Transplant team meeting
04/2008-Transplant workup
05/2008-Active Transplant list
3/20/09-Cadaver Kidney Transplant
4/07/09-Tenckhoff Catheter removed
4/20/09-New kidney biopsy
peleroja
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I have 16 hats, all the same style!

« Reply #7 on: June 19, 2009, 09:26:45 AM »

I did this a while back, and just got an email from Laura Richardson.  In no way did she address the issue for which I had written.  All she talked about was health insurance for everyone.  This is from her email:

"You will be pleased to learn that I will be re-introducing my healthcare bill, "Equal Rights for Health Care, Title 42."  As a fundamental right, all Americans should have equal access to healthcare."

Maybe if we just keep bombarding them with emails and letters something will be done.
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TiffanyJean
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« Reply #8 on: June 20, 2009, 04:39:59 PM »

Sent a letter to both the Reps! plus sent an email to all our family and friends who have been supporting us to help support us and all kidney patients by sending a letter to their reps too!!

Tiffanyjean
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"Just think people have no problem having only one kidney, so we have to ask, why
did God give us two kidneys?  Perhaps it is so you would have an extra one to
donate and save a life!"
                        - Dr. Stuart Greenstein, Kidney Transplant Surgeon,
                        Professor of Surgery, Montefiore Medical Center, Bronx, NY   
                        Source of quote:   www.ourjerusalem.com
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