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Medicare And Gleevec?

Gleevec Medicare

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#1 AllTheseYears

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Posted 28 January 2015 - 02:35 PM

Hello, Everyone,

 

Although I'm a 12-year CML survivor and glad to say, I'm doing well, I continue my battle against the cost of treatment.  I'm about to receive Medicare and am having trouble getting information about coverage for Gleevec.  Seems Medicare Part B no help; hard to get answers on Part D.  Anyone had any experience with this issue?  

 

Also.....just a word of encouragement to fellow CML survivors, especially the newly diagnosed.  I remember how difficult it was in the beginning.   



#2 SusanL

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Posted 28 January 2015 - 04:47 PM

I wish I could make it simple for you but it seems what   health insurance you choose to have with your medicare is different for everyone and thus makes the cost different. I live in Ca and have Kaiser as my Senior Advantage plan.  I have been on medicare for 5 yrs.  It doesn't make any difference which TKI your on, the medicare gap (donut hole) still applies unless you can show little assets and financial need.  Because the drug I am on Bosulif costs around $8,000 per mo I fall in that gap/hole in Jan with my first refill.   Kaiser charges me $2,600 for my  that refill and then $12.00 per mo for the rest of the year.  this has happened every Jan since I have been on Medicare.My understanding of medicare is that it could be $4,000.  I don't know, and don't question why I "only" pay $2,600.

    I tried to find out what it was going to costs before I retired but no one had any answers.  retired 12/31, picked up refill 1/5 and then I found out.  What fun to start the year out in a debt that I am having a harder time every year to pay off.

   I would be interested to hear what you find out.

Susan



#3 AllTheseYears

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Posted 28 January 2015 - 05:20 PM

Susan, Thank you for responding.  You seem to have stumbled upon much better Rx coverage in California than I can possibly get here in North Carolina.  I'll press on.  It's quite depressing to find that I'll be paying more for Gleevec on Medicare than I did with a private insurer pre-Medicare, even if I find a useful Part D plan. 

 

And yes, I'll post my findings. I've found the since my CML diagnosis, my most persistent nasty "side effect" has been paying for my meds!



#4 Antilogical

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Posted 28 January 2015 - 06:12 PM

In 3.5 years, hubby and I will be looking for a house or condo about 3 or 4 states south of where we live now.  I'm trying to comprehend the new terminology (e.g., Medicare Part D, donut hole) so we can prepare ourselves.  Hopefully, generic Gleevec will be a little easier on the pocket.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#5 Yougotafriend

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Posted 28 January 2015 - 06:30 PM

Hi I've only been on Gleevec now eight months but I do have Medicare part D with Humana.
When you first get a drug filled you have to pay your deductible and your copayment once you get through the copayment part which pays out about I think $2800 you get into the gap think the gap last till you get past a certain amount and then you get into catastrophic phase where you only pay 5%. I just went through that here 1 January and my total cost was $2840 for 30 day supply of Gleevec. My refill in February will cost me about $425 which I should pay through the end of the year then the cycle starts over next year.

Hope this helps this is the first time I've posted on a topic so I hope it comes out alright:)

#6 Marnie

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Posted 28 January 2015 - 07:37 PM

If one has insurance through an employer after retirement, and then one turns 65 and enrolls in medicare as well, does the insurance plan take precedence, or is one forced to use medicare for prescription drug costs?



#7 SusanL

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Posted 28 January 2015 - 09:12 PM

If you have an employer who will continue to pay for full health benefits after you retire  I don't think you would be forced to go on medicare.  I have never heard of an employer who is that generous.  I had Kaiser insurance before I retired which my employer paid for.   I continue to have Kaiser when I retired, except it is now a medicare supplemental plan. I chose Kaiser because I wanted the same providers,  My previous employer has nothing to do with it.  And, yes everything costs more with medicare and supplemental ins.  How much your co-payments are depends on which supplemental plan you choose to go along with medicare.



#8 Buzzm1

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Posted 28 January 2015 - 09:59 PM

ObamaCare just hit home.
I'm a Lockheed Martin retiree w/Medicare Advantage at Kaiser.
Along with paying $104.90/mo. for Medicare A & B, I currently pay an additional $121/mo. to Lockheed
My first Gleevec Rx for the year did cost $20 ... for a 30 day supply
After that it did cost $10/mo. for the rest of the year.
 
Just received notice that Lockheed Martin is dumping their retiree Medicare coverage
forcing me to sign up through OneExchange for Medicare coverage.
 
I know this is going to cost money, and complicate matters.
I really don't need this ... 

For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#9 tadly

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Posted 29 January 2015 - 12:37 AM

In response to Marnie's question...My wife and I are heading into retirement this year.  After retirement, the employer will still be paying it's share of our health insurance premium, and we will be paying the retiree share.  We are also required to go on Medicare hospitalization and medical services (Parts A & B ) and can lose our employer's retiree  insurance if we don't keep up Medicare .  Medicare will be treated as our primary insurance and coordinates with our retiree insurance.  Our PPO plan will reduce our costs compared to if we had Medicare alone.  For a higher premium we will be getting prescription coverage (Part D) included from the same insurer as our retiree PPO medical plan.

 

I think Medicare prescription coverage (Part D), is only provided by private insurers. Just be sure when you retire and you pick or have drug insurance one way or another.  Get this information from your employer about the options. Hope this helps.  It's a vitally important detail that's not simple to figure out. 

 

It upsets me and worries me when retirees get medical benefits reduced.  I know it happened with thousands of GM employees (I used to be in the UAW union) well before Obamacare.



#10 Marnie

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Posted 29 January 2015 - 07:18 AM

I'm on husband's insurance.  When he retired last year, he was able to stay on their plan entirely, though now we pay the premium.  I jumped to his insurance a few years ago when my employer made changes that impacted me negatively.   At this point, there have been no changes to my husband's plan, but he doesn't yet qualify for Medicare, so I wasn't sure of the implications.  Thanks for the info.

 

Marnie



#11 AllTheseYears

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Posted 29 January 2015 - 12:41 PM

Interesting conversation about Medicare and Gleevec.  Bussm1:  I, too, am getting the message that I'm going to be out a lot of money to get Gleevec....even when (if?) it turns generic.  Like you, I just don't need the headache either, but here it is. I can't help but worry what might happen if Gleevec stops working for me and I'm forced to take an even more expensive, brand drug.  



#12 Buzzm1

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Posted 29 January 2015 - 02:12 PM

AllTheseYears, I called The Kaiser business office, to see about staying with them, and asked about their drug coverage, and the lady said 15 for generics, and 45-95 for brand names ... I was thinking dollars .. but soon realized she was referring to % ... gasp

 

the nightmare begins


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#13 chriskuo

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Posted 30 January 2015 - 04:42 AM

Buzzm1,

You may have a misunderstanding of what Obamacare changed. It did not change your retiree plan.

It did change the donut hole. The donut hole will decrease to 0 over the next 5 years; that is good news for us.
Also Gleevec is expected to go generic sometime next year, although there are a lot of questions about the cost and version of the drug.

#14 Buzzm1

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Posted 30 January 2015 - 12:13 PM

chriskuo,

 

Obamacare did change my retiree plan, In that my former 35 year employer, Lockheed Martin, has chosen to dump their excellent retiree medical plan, forcing retirees,  which includes me, to insure through a medical exchange (Obamacare).

 

Donut hole? what donut hole? there was no donut hole cost .. Lockheed Martin retirees were covered thru the donut hole ... there was no added cost for Gleevec, or any TKI, for that matter.  We didn't need to subscribe to Medicare D.

 

My copays for Gleevec totaled $130 for the entire year, and it has been that way for the last 5 years, even though the price of Gleevec went from $3900/mo in Oct., 2009, for a 30 day 400mg Rx, to just shy of $10,000/mo. now.

 

We are well aware that Gleevec will go generic next year, and that the donut hole will go to zero in 5 years.

 

Regardless, the  cost of drugs, to me, especially Gleevec, generic, or not, is going to skyrocket, and that's the bottom line.

 

The fear of Obamacare was that employers would dump their existing medical coverages and force employees to insure through exchanges.  For me, it just hit home.  But, it's really a boom for health insurers.

 

Buzz

 

fixing healthcare, first things first http://bit.ly/176OIxM


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#15 chriskuo

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Posted 31 January 2015 - 02:46 AM

Buzz,

 

Your anger at Lockheed Martin is understandable. but your assignment of blame to Obamacare is not.  It is true that many employers are making their retiree medical employee plans less attractive.  My former employer did something similar to prescriptions and my cost for TKIs jumped dramatically in 2013.

I am now paying more than $3,000 per year compared to about $500 per year.

 

However, the cutbacks to retiree medical plans have ABSOLUTELY NOTHING to do with Obamacare.  Focus your attention on your former employer.  Obamacare has been favorable to retirees by closing the donut hole over the coming years.  Many employers, including mine, still cover the donut hole themselves.  The catastrophic coverage in Medicare Part D has not changed.  What has changed is that employers have dropped commercial coverage for Medicare Part D.

 

I spent many hours and days researching this.  In fact, my former employer and insurance company made many mistakes in the changeover to Medicare Part D.  I repeat, this change had NOTHING to do with Obamacare.  This board should be a place where we can get facts, not polictical invective.



#16 Buzzm1

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Posted 31 January 2015 - 09:53 AM

Chriskuo,
 
In response to your political invective.
 
Who is to say that without the advent of Obamacare, that Lockheed, or any other company, would be so quick to dump their employer-based medical plans?
 
Lockheed was preceded by GE, in dumping their retirees' medical plan. http://bit.ly/16aVOoV
 
Ten times more Americans than first estimated will lose employer-based health insurance under Obamacare: CBO http://bit.ly/18D9Ws1

For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#17 AllTheseYears

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Posted 31 January 2015 - 11:37 AM

Correct, Obamacare did not change retirement health plans.  If your company dumped you, it was a decision independent of Obamacare. However, your firm might have seen a good opportunity to turn the screws when Obamacare was approved. I, too, spent a great deal of time researching Obamacare, including reading the ENTIRE law online.  There was a lot of misinformation and fear tactics deliberately disseminated out there...and that continues today. 

 

As for me, my company "dumped" me during the recession of 2008 (my job was eliminated) and I was left without insurance at all. My work record was close to 33 years and I am well educated.  No private insurance carrier would offer me coverage, although I had paid for it during that 33 years, since I had pre-existing CML.  If not for Obamacare, I literally would have died because I could not have paid for medical care and certainly not for Gleevec. 



#18 chriskuo

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Posted 31 January 2015 - 01:06 PM

Obamacare did NOT negatively effect retiree health care. Employers have been cutting back on health care, particularly for retirees, since BEFORE ObamaCare.

That is FACT, not political. What is political is that Americans let politicians manipulate them into accepting a health care system that causes serious issues for many people. One big issue is that, unlike other countries, American politicians prohibit Medicare from negotiating prices with drug manufacturers.

Many people on this board are getting TKIs at very reasonable prices, regardless of the list price. However, there are still people without insurance who have challenges getting the drugs. Also, although Medicare Part D has catastrophic coverage capped at 5%, that can be substantial for TKIs. In addition, many people have to pay for the donut hole themselves, which is many thousands of dollars. Fortunately, the donut hole will be phased out completely by 2020.

Before you let anti-Obamacare rants influence your opinions, please understand the facts.

#19 Gail's

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Posted 01 February 2015 - 05:55 PM

Not going to get into the debate over obamacare because I think the anger should be aimed at the pharmaceutical companies and insurance companies. I have been a health care provider for more than 20 years but it took me very little time behind the scenes to realize those are the two biggest money makers related to health care.
My question is if anyone knows if the company producing gleevec would help pay your copayment for those who are on Medicare or private insurance.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#20 Red Cross Kirk

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Posted 01 February 2015 - 07:29 PM

If your income is less than 500% of the federal poverty guidelines, then the LLS has a copay assistance program that will help with pharmacy copays.  Here's the maximum amount per year that they can help with:

 

  • Chronic lymphocytic leukemia - assistance is available up to $2,500 (for applicants approved on or after 1/1/14)
  • Chronic myeloid leukemia - assistance is available up to $7,500 (for applicants approved on or after 10/1/14)
  • Lymphoma (Hodgkin and non-Hodgkin) - assistance is available up to $2,500 (for applicants approved on or after 1/1/14)
  • Mantle cell lymphoma - assistance is available up to $5,000 (for applicants approved on or after 12/13/13)
  • Myelodysplastic syndromes - assistance is available up to $5,000
  • Myeloma - assistance is available up to $10,000

I don't know what kind of help Novartis gives to those who can't afford Gleevec.


Kirk

 

9/25/2012  p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012  3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013  0.914%, 0.434%, 0.412%
10/2013  0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014  0.174%, 0.088%, 0.064%

2015  0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%

2016  0.041%, 0.039%, 0.025%

2017  0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%

2018  0.233%






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