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Author Topic: Lifesaving kidney treatment, but only to a point  (Read 2600 times)
okarol
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« on: March 13, 2009, 11:48:50 PM »

Lifesaving kidney treatment, but only to a point
DAVID TULLER
Published: Friday, March 13, 2009 at 5:20 a.m.
Last Modified: Friday, March 13, 2009 at 4:06 p.m.

Margaret Oliver, a 47-year-old hairdresser in Venice, Calif., received a lifesaving kidney transplant in 2002. The government covered the costs under a special Medicare program for the hundreds of thousands of Americans with kidney failure who need either dialysis or a transplant.

Three years later, Medicare stopped paying for the expensive immunosuppressive drugs that Ms. Oliver needed to minimize the risk that her body would reject the organ. Because her kidney was functioning successfully at that point, she was no longer considered to be suffering from end-stage disease and so no longer qualified for the special coverage.

With the drugs costing about $800 a month, Ms. Oliver, who was self-employed, was able to buy them only sporadically, which endangered her transplanted organ. “It was horrifying," Ms. Oliver said. "I just didn’t know what to do."

Chronic kidney failure, also known as end-stage renal disease, is the only condition for which Medicare extends coverage to everyone, and not just to those who already qualify because of age or disability. The kidney program, mandated by Congress in 1973 after legislative hearings about the social and economic costs of dialysis and kidney failure, has been credited with greatly expanding access to treatment in subsequent decades.

The program also covers 80 percent of the cost of immunosuppressive drugs, but only for 36 months after a transplant for patients who do not otherwise qualify for Medicare.

This week Senator Richard J. Durbin, Democrat of Illinois, and Senator Thad Cochran, Republican of Mississippi, introduced legislation that would require Medicare to cover the drugs for the life of the transplanted kidney. A similar bill introduced in the last Congress languished in committee.

“This is one of the principal things we can do to help people keep the first transplant they get,” said John Davis, chief executive of the National Kidney Foundation.

For years, advocates for people with kidney failure have criticized the three-year limit as costly from a medical and economic perspective and as an unfair burden on patients with few resources. Although there are no exact numbers on how many patients have lost transplanted kidneys after Medicare coverage for their drugs lapsed, nephrologists and transplant surgeons routinely cite examples of such cases from their practices.

Ms. Oliver, the hairdresser, was unable to get prescription drug coverage under the recently established Medicare Part D program, since Part D does not cover those who are only in Medicare because of end-stage renal disease. She finally managed to obtain coverage through a state-sponsored program for high-risk individuals. But the many months of interrupted treatment significantly weakened her new kidney and increased the chances that she will lose it in the near future, said Dr. Stanley C. Jordan, Ms. Oliver’s surgeon and the medical director of the kidney transplant program at Cedars-Sinai Medical Center in Los Angeles.

“So far she is doing okay, but she will likely return to dialysis at some point in the next one to two years,” Dr. Jordan wrote in an e-mail message.

Transplantation is recommended people with advanced kidney failure who are healthy enough to undergo the surgery. It generally provides better long-term outcomes and a higher quality-of-life than dialysis, which can be a grueling regimen and take a serious toll on other organ systems in the body. Many patients must remain on dialysis for years while they await a suitable organ for donation.

And experts say some patients choose not to get transplants because they are worried about not being able to afford the immunosuppressive medications in the future. Because of the drug coverage limit, transplant centers also must consider patients’ ability to sustain a long-term medication regimen when deciding whether to accept them.

Patients need to take the drugs for as long as they have the transplanted kidney. While many organ recipients are able to obtain health insurance through employers or spouses, others, like Ms. Oliver, find themselves with few options in the private insurance marketplace. If they lose the kidney, they have to return to dialysis — which Medicare will cover — and return to the organ waiting list.

Moreover, there is no guarantee that a second matching kidney will be found for them or, if one is, that they will still be healthy enough to receive another transplant.

Medicare spends on average $17,000 a year for the immunosuppressive drugs for a kidney transplant recipient, compared to about $70,000 for a year of dialysis, according to the National Kidney Foundation. A transplant costs more than $100,000.

“Kidney transplantation is cost-effective versus dialysis, and the government has to pay for one or the other,” said Dr. Mark D. Stegall, surgical director of the Mayo Clinic’s kidney transplant program. “Most transplant programs try their best to help the patients, but I think there are centers that turn people down or strongly discourage people from getting transplanted if they don’t have coverage.”

http://www.goupstate.com/article/20090313/ZNYT04/903133007/1101/LIVING
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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 #1 on: March 14, 2009, 02:15:07 AM »

"Because her kidney was functioning successfully at that point, she was no longer considered to be suffering from end-stage disease and so no longer qualified for the special coverage."

Ok, this is where I need to get on my soap box and say something.  Kidney transplant is a *treatment*, not a *cure*, right?  Because those with transplanted kidneys are not using the organs they were born with, so that means that the above statement is NOT true because "her" kidney(s) is/are still not functioning!   The kidney that was donated is functioning, and that is only because she takes the medication!!!  Who makes up this stuff?  Especially when said patient will end up with kidney failure *again* after not taking the needed medication!!!  And no one *wants* to take the medicine, they do it because they have to if they want to stay off of dialysis!!!  :urcrazy;

The fact that my country does this routinely to both ESRD patients and their donors, whether living or deceased, is a serious disgrace and a slap in the face to those who donate.  With the way the economy is going these days, no kidney transplant patient can rely on having good insurance coverage to help pay for their medication, nor can they be guaranteed a good income to pay for them.  The fact that we treat life and those who donate it with such little regard is disgusting!  Let's hope our law makers can finally come together to put an end to this incredibly shameful "policy" and actually do something that makes sense and promotes what again??? Oh, that's right!  LIFE!!!  And, for those who donate, both living and dead, let's do our best to preserve their incredibly kind and priceless gifts to those who need them.  Anything less makes us one horribly ugly, careless, calous country.  And I for one do not want to live in that country.  Just my  :twocents;

KarenInWA
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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!
Rerun
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« Reply #2 on: March 14, 2009, 07:37:32 AM »

I think of when I got my transplant in 1987.  Hmmmm no help with drugs at all.  There wasn't the 3 year freebie.  People were so thankful.  OMG when they said they would help with drugs for 3 years people had thought the doors of heaven were opened.  All they wanted was to be able to get a good job and then they would not need help.

Give a mouse a cookie.........

It is not up to tax payers to keep us going.  You need to help yourself if you are going to sign on to get a life saving organ.  Who pays for heart transplant drugs?  Who pays for liver transplant drugs?  NOT Medicare!

I had my transplant and I worked the 17 years that it was functioning plus 9months that it wasn't.  I hate being in the social security and disability pool, but if I get a transplant all that stops 12 months (NOT 3 years) after my transplant.  OK so my drugs are free for 3 years but where will I live and what will I eat.   If I win the lottery or some agency would guarantee me a job with full benefits then I might shoot for another transplant.

Don't bite the hand that feeds you (Medicare) go to the Pharmaceutical Companies and have them lower the prices of these "LIFE SAVING" drugs.  Why do they get to eat the FAT Cow?  That is extorsion!  Making struggling transplant patients scrape up every dime they own to buy a pill.

It is not Medicare's fault.  They have done NOTHING but help renal patients. 

                                          :rant;

OH and now we want Medicare to pay for dialysis 7 days a week.  ENOUGH ALREADY!

Maybe we could put some earmarks in this bill that would pay my light bill and my fittness club membership!!!!!
« Last Edit: March 14, 2009, 07:40:28 AM by Rerun » Logged

Zach
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« Reply #3 on: March 14, 2009, 08:13:21 AM »


OH and now we want Medicare to pay for dialysis 7 days a week.  ENOUGH ALREADY!


Your point is well taken.

However, the petition is for every other day, not seven days a week.
Let's stay with the facts.

 :-*
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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."
Rerun
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« Reply #4 on: March 14, 2009, 08:21:14 AM »

Sorry I'm jumping the gun!  7 days a week plus health fitness club tokens will be next.

I'm a visionary to a fault.    :)
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Zach
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« Reply #5 on: March 14, 2009, 08:23:00 AM »


 health fitness club tokens will be next.


Private insurance is already doing this.

8)
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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."
Rerun
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« Reply #6 on: March 14, 2009, 08:32:01 AM »

I'm sorry....... for those who "don't" have private health insurance. 

                           :waving;
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RichardMEL
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« Reply #7 on: March 15, 2009, 01:55:05 AM »

I'm really loath to comment on another country's policies but I would just make this comment...

It seems a tad short sighted to me to allow 3 years of benefits then nothing. Why do I say that? Because if you lose the transplant due to not having meds then you'll wind up back on dialysis and need the state to support you again, provide meds and costly dialysis treatment to support you - not to mention taking a D spot away from someone else who hasn't had a transplant - and if that transplant could have been working fine with meds then that seems like a lose lose situation.

Down here I know they will subsidise the drugs for life under exactly that thought - it is cheaper to support the transplanted patient with their drugs than supporting them on Dialysis and potentially with that support they can return to work, become a taxpayer etc- surely a win/win situation. Even if they can't return to work they would be less of a drain on the health system with a supported and functioning kidney transplant rather than going back on dialysis.

Just back to the US policy... I absolutely agree that if someone gets a tx and is thus, in theory, able to get back to the workforce and thus get insurance then yes, they should pay that way and not be supported by the state. Absolutely. However what if they are poor, can't get back to work(for any number of reasons) or what? I still believe they should be assisted with their drugs to support the transplant. It seems silly to me to just grant someone a gift that could last years and potentially let it go to waste after a few because they are unable to get private insurance.

That's my two cents anyway.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
okarol
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« Reply #8 on: March 16, 2009, 11:33:26 AM »


Agreed Richard. I hope this discontinuation of medication benefits ends. We've been pushing for it for a long time, but nothing happens very quickly.
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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
Rerun
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« Reply #9 on: March 16, 2009, 11:44:56 AM »

The answer is on the Drug Companies door.  They charge a huge amount because if we want to live we will pay.  Medicare has been very nice in helping us out.

I have no idea how the poor heart transplant and lung transplant people survive as they get no help from Medicare.
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okarol
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« Reply #10 on: March 16, 2009, 12:31:44 PM »

Rerun,
All transplants are covered EXCEPT for kidney transplant patients.

January 1, 2002 - Section 113 of the BIPA (Benefits Improvement) Act of 2000 removes Medicare time limits for covering immunosuppressive drug costs for heart transplant recipients. If your benefits for anti-rejection drugs ran out in the past, you can now get them again. This does not apply to such drugs used for end-stage kidney disease.

from www.kidney.org/transplantation/donorFamilies/pdf/statement.pdf
Expanded Medicare Coverage for Transplant Recipients
The Beneficiary Improvements and Protection Act (BIPA, or Public Law 106-554) provides a
significant enhancement in Medicare coverage for immunosuppressive (anti-rejection) medications
needed by transplant recipients.
What kinds of transplants does this include?
Medicare pays for some heart, lung, and liver transplants if the recipients are aged 65 or disabled.
Heart, lung, and liver transplant recipients whose transplant was covered by Medicare will be eligible
for indefinite drug coverage, as well as kidney transplant recipients who meet age or disability
requirements.
Who is not covered by the enhanced benefit?
Anyone who is entitled to Medicare based solely on the diagnosis of ESRD.
How many people will this extension affect?
According to estimates from the Institute of Medicine, more than 34,000 people will have extended
coverage in 2001, growing to more than 44,500 people in 2004.
What about kidney transplant recipients whose Medicare entitlement is based solely on ESRD?
These people will continue to receive drug coverage for 36 months after their transplant.
When does the coverage go into effect?
The effective date of the coverage is December 21, 2000 when it was signed by President Clinton.
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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
pelagia
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« Reply #11 on: March 16, 2009, 06:45:37 PM »

I thought heart, lung, liver (and other?) transplants are covered by US Medicare only if the recipient is over age 65 or disabled, whereas kidney transplants are covered for all that don't have private insurance.  Or maybe it is decided on a state by state basis.  And, isn't it true that all transplant recipients (kidney, liver, lung, heart) who are over 65 or disabled are eligible for drug coverage?  If you get a kidney transplant and then reach 65, aren't your immunosuppressives covered if you signed up for Medicare (part B?) at the beginning?  If you get a liver transplant at age 45 and you are not disabled, are your immunosuppressives covered by Medicare?  I didn't think so.

 
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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
okarol
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« Reply #12 on: March 16, 2009, 08:58:25 PM »

I thought heart, lung, liver (and other?) transplants are covered by US Medicare only if the recipient is over age 65 or disabled, whereas kidney transplants are covered for all that don't have private insurance.  Or maybe it is decided on a state by state basis.  And, isn't it true that all transplant recipients (kidney, liver, lung, heart) who are over 65 or disabled are eligible for drug coverage?  If you get a kidney transplant and then reach 65, aren't your immunosuppressives covered if you signed up for Medicare (part B?) at the beginning?  If you get a liver transplant at age 45 and you are not disabled, are your immunosuppressives covered by Medicare?  I didn't think so.

There's no clear deadline for when "disability" ends for a heart, lung or liver patient. So the doctors have leeway.
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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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