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Author Topic: AFTER 3 YEARS, MEDICARE PROGRAM STOPS PAYING FOR ANTI-REJECTION MEDICATION  (Read 6681 times)
okarol
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« on: December 01, 2008, 06:11:34 PM »


Duncan transplant patient loses drug benefit
AFTER 3 YEARS, MEDICARE PROGRAM STOPS PAYING FOR ANTI-REJECTION MEDICATION
 
BY WENDY K. KLEINMAN
Published: November 30, 2008

All a Duncan man knows about his organ donor is what they had in common: They were about the same age and were outdoorsmen. The Arizona man died following a motorcycle crash; his kidney and pancreas now belong to Mike Reddin.

But in August, three years after his double-transplant, Reddin, 46, was dropped from a special Medicare program that covered the cost of his anti-rejection drugs. The Basco Leather Goods mechanic now can’t afford the drugs he needs to hold onto his health.

Wondering why
Medicare’s policy is to cover people with chronic kidney failure, regardless of age. It pays for dialysis, transplants and even some medical expenses that aren’t related to kidney problems.

Although End Stage Renal Disease Medicare will pay for dialysis indefinitely, the federal health insurance program stops paying for post-transplant drugs after three years.

Patients in most cases must take the drugs the rest of their lives to keep transplanted organs, which their bodies view as foreign objects.

Reddin knew his three-year mark was approaching, but didn’t realize just how much he would have to pay because he never saw a bill from the time he went on dialysis in 2003 until a few months ago.

"Six hundred dollars out of me and my wife’s paycheck, that’s a big chunk,” Reddin said.

The $600 is after his employer pays a portion and he uses manufacturer’s coupons.

There are no generics for the three Prograf and six Myforic pills he has to take every day.

Reddin relies on his parents to pay for the drugs.

"It’s embarrassing,” Reddin said. "And it makes you wonder why. I mean, I pay thousands of dollars worth of taxes out of my paycheck — and I know every American does — and it’s not just kidney people, it’s people with cancer, heart problems, diabetes — all this medicine is high.”

There are assistance programs available, but Reddin is not eligible for them because he works.

"It looks like if you’re working you get punished. ... I’m hoping somewhere out there’s assistance, but it’s not looking good,” he said.

"It’s been hard,” said his wife, Delisa.

"There’s things that we’re not able to do for our kids. ... We have one that’s trying to work hisself through college. ... We’d love to go send him to college but financially we’re not able to.”

Don’t plan ‘too far ahead’
There is a drop in survival for transplant patients after three years because some patients can’t afford the drugs, said Dr. Jose Elamm, a transplant nephrologist at Integris Baptist Hospital, where Reddin goes for checkups. Some patients ration their supply, he said.

That accounts, in part, for what Elamm said is a "significant number” of people on a waiting list for another transplant.

About 3,000 transplanted kidneys fail every year and an estimated 12 percent of those are due to noncompliance associated with drug costs, said Troy Zimmerman, a vice president with the National Kidney Foundation.

Reddin was diagnosed with diabetes at age 5.

He should live at least another decade if he continues taking the anti-rejection drugs.

The average life expectancy of a diabetic on dialysis is three years, Elamm said. But the average life of an organ from a living donor is 15 years, and the recipient can live longer back on dialysis.

The Arizona donor’s body was kept alive until the transplant.

"I take everything day-by-day now,” Reddin said. "You don’t want to plan too far ahead.”

http://newsok.com/duncan-transplant-patient-loses-drug-benefit/article/3326307
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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
jbeany
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« Reply #1 on: December 01, 2008, 08:06:07 PM »

$600 a month with insurance.  Crap, just shoot me now and get it over with. . .

But honestly, didn't he know it was going to be this  expensive before hand?  Shouldn't they have made sure he knew that at his transplant hospital before the 3 yrs was up?  What the heck do they financial coordinators for if not to warn people about this?
« Last Edit: December 01, 2008, 08:09:03 PM by jbeany » Logged

"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

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« Reply #2 on: December 01, 2008, 09:14:26 PM »

This is why I'm not going to be listed on the transplant list.  I would be kicked off Social Security Disability in 12 months and be living on the streets for 2 more years when Medicare cuts me off of my medication.  THEN I'd be back on dialysis and back on Social Security.

I guess if I would be confident enough to know I would get a great job with full benefits it would be different.

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okarol
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« Reply #3 on: December 01, 2008, 09:34:38 PM »


Yes, people know they can kicked off at 36 months, but the goal is to be employed by a company that has a health plan. This article says the employer helps pay for part of the medication cost, but it does not say he has health insurance or a prescription plan. That sort of confuses me.
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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
KarenInWA
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« Reply #4 on: December 01, 2008, 09:41:55 PM »

This whole thing just really pisses me off.  I'm the kind of person who likes to get the most bang for the buck, so to speak.  As a tax paying U.S. citizen, nothing angers me more than to know that after we (tax payers) spend a lot of money on someone's transplant surgery, we then stop paying for the needed medicine after a measley 3 years???  Why?  If someone is getting a $250,000 or more surgery, I WANT them to reap the benefits of it FOR AS LONG AS POSSIBLE!!! And, as we all know, in the case of kidney transplant, they're just going to end up on expensive dialysis treatment again, which will cost us what, 2, 3, or 4 times more than the medication?  Do those who make laws know how to do math?  Who in charge thinks this is an okay and sustainable good idea?  And then the whole thing of punishing those who work.  Don't give those who are trying to make it in this world any help, make them quit their job (and being a tax paying citizen) so they have to go on Social Security and THEN we'll help them!  Social Security should be there for those who truly cannot hold down a job, not for the ones who can work and want to work, but have to go on it just to get their needed medications paid for!  And, another thing about not paying for those medications for longer than 3 years - do we really want to add to the long list of people who need transplanted organs???  And I'm not just talking kindeys here, I'm talking all of them.  Why wouldn't that be our top priority to make sure that we have as few repeat patients as possible.  WHY IS MY COUNTRY SO G'DAMN BACKWARDS????  Wouldn't it be more cost effective and efficient to pay for the medications for as long as possible, and using our limited supplies of kidneys for more patients?  Also, if I were someone who donated my kidney to someone, I'd be really disappointed if it failed after 3 or 4 years due to this sick, careless, barbaric policy.  Whoever signed this in to law should be ASHAMED.  Don't give me their names, I'm liable to hunt them down and expose them!

KarenInWA

Mad as hell and not going to take it anymore!




Edited: Fixed format errors - okarol/admin
« Last Edit: December 02, 2008, 08:04:41 PM by okarol » Logged

1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Chris
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« Reply #5 on: December 01, 2008, 09:53:41 PM »

Darn it, I entered a reply and it didn't post and I thought I wrote something good for once.

He shouldn't be shocked one bit if he paid attention to the Medicarebook sent out each year and there is an additional book covering dialysis and transplant. Medicare has a billing company that sends out statements of what the charges were and what Medicare paid.

I agree with jbeany about the hospital. Either the hospital messed up bad on discussing this issue or he didn't pay attention. My center made sure I had some sort of way to get meds after my transplant before I was listed at their hospital.

Since he is diabetic, he may have complications from diabetes that could qualify him for disability and Medicare Part D. Something he needs to look into.

With this story, there is not enough information. To me thisstory says that this man was either to stupid, trying to get 15 minutes of fame and have people do the leg work for him, or that there was an agenda to show how Medicare works post transplant.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Run8
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« Reply #6 on: December 02, 2008, 06:39:12 PM »

I don't know what drugs i will be on for a transplant, but i took some of the meds listed and I could not find them anywhere on my insurance coverage.
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pelagia
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« Reply #7 on: December 02, 2008, 07:16:07 PM »

Karol, didn't you post something earlier this year about attempts to change the legislation?  KareninWa - this is the sort of thing you should tell your elected reps!
« Last Edit: December 03, 2008, 03:31:06 AM by pelagia » Logged

As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
Run8
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« Reply #8 on: December 02, 2008, 07:26:00 PM »

I meant to say looked not took
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okarol
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« Reply #9 on: December 02, 2008, 08:02:37 PM »

Karol, didn't you post something earlier this year about attempts to change the legislation?  KareninWa - this is the sort of thing you should tell you elected reps!

Yes, it's in the Advocacy section http://ihatedialysis.com/forum/index.php?topic=8829.0 Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2007 (Introduced in House)
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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
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