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Is it possible to take 40mg of Sprycel?

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#1 SUE

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Posted 10 January 2016 - 01:39 PM

Hi All,

 

I was diagnosed in April, 2013 and started Gleevec, 400mg.  Because of very bad side effects, I took a 6 week break from Gleevec in November, 2013, and started 50mg Sprycel at the end of December.  In early February Fish went up to 6.8(from 5.6 three months earlier), but since then everything has been going down.  My PCR was .149 in May, 2014, and .015 in August.  Since November, 2014 I have been PCRU.

 

If I am still PCRU in March, I want to decrease my Sprycel dosage.  My Onc is not happy about this, but I have come to the point where I am ready to insist.  She suggested 40mg instead of 20 mg.  I am willing to go down to 40 for a while, but I don't know if I can get a 1 month prescription for 60 tablets of 20mg.  Does anyone know if it is possible to take 40mg a month without paying double?

 

Thanks very much.

 

Sue

 

 

 


Dx  April 2013, FISH 62,  BMB not enough for PCR test; put on Gleevec 400;

 August 2013, FISH 8.7;

Oct 2013, FISH 5.6

Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;

Feb, 2014 PCR  6.8

May,2014  PCR   .149

Aug, 2014 PCR    .015

Nov. 2014 PCRU

March, 2016  went down to 40mg Sprycel

Oct. 2016   stopped Sprycel for a couple weeks due to concern about shortness of breath.  Echo showed mild PAH.

Nov 1 2016  resumed Sprycel 20 mg daily 

Dec 2016  PCRU

March 2017  PCR 0.020

May 2017     PCRU

Sept  2017   PCRU

Dec    2017  PCRU

 


#2 Buzzm1

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Posted 10 January 2016 - 05:01 PM

Sue, your Onc. can write the monthly Rx for 60 Sprycel 20mg ... 


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


#3 SUE

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Posted 10 January 2016 - 05:49 PM

Thanks, Buzz.  I'll send her an email before my next appointment to see if she knows about that option.  I had mentioned my concern at my last appointment, but she didn't respond.

 

Sue


Dx  April 2013, FISH 62,  BMB not enough for PCR test; put on Gleevec 400;

 August 2013, FISH 8.7;

Oct 2013, FISH 5.6

Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;

Feb, 2014 PCR  6.8

May,2014  PCR   .149

Aug, 2014 PCR    .015

Nov. 2014 PCRU

March, 2016  went down to 40mg Sprycel

Oct. 2016   stopped Sprycel for a couple weeks due to concern about shortness of breath.  Echo showed mild PAH.

Nov 1 2016  resumed Sprycel 20 mg daily 

Dec 2016  PCRU

March 2017  PCR 0.020

May 2017     PCRU

Sept  2017   PCRU

Dec    2017  PCRU

 


#4 scuba

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Posted 10 January 2016 - 06:40 PM

Hi All,

 

I was diagnosed in April, 2013 and started Gleevec, 400mg.  Because of very bad side effects, I took a 6 week break from Gleevec in November, 2013, and started 50mg Sprycel at the end of December.  In early February Fish went up to 6.8(from 5.6 three months earlier), but since then everything has been going down.  My PCR was .149 in May, 2014, and .015 in August.  Since November, 2014 I have been PCRU.

 

If I am still PCRU in March, I want to decrease my Sprycel dosage.  My Onc is not happy about this, but I have come to the point where I am ready to insist.  She suggested 40mg instead of 20 mg.  I am willing to go down to 40 for a while, but I don't know if I can get a 1 month prescription for 60 tablets of 20mg.  Does anyone know if it is possible to take 40mg a month without paying double?

 

Thanks very much.

 

Sue

 

Our prescriptions are not priced by number of tablets, but by protocol regimen. There is very little difference between 40mg. and 20mg. in terms of cost even though there are twice as many pills in the bottle for a 40mg monthly prescription as there is for a 20mg monthly prescription. Likewise there is no discount when your dose is cut from the normally initial 100mg dose to 20mg. dose. You and your insurance company are paying for the intellectual property which created the drug. The actual cost of manufacture is pennies per pill. 

 

p.s. I am currently taking 20mg per day and am near PCRU (i.e. <0.01%). I did take 40mg one day and 20 the next for a time a couple of years ago and the prescription cost was unchanged.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#5 Red Cross Kirk

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Posted 10 January 2016 - 08:14 PM

Our prescriptions are not priced by number of tablets, but by protocol regimen. There is very little difference between 40mg. and 20mg. in terms of cost even though there are twice as many pills in the bottle for a 40mg monthly prescription as there is for a 20mg monthly prescription. Likewise there is no discount when your dose is cut from the normally initial 100mg dose to 20mg. dose. You and your insurance company are paying for the intellectual property which created the drug. The actual cost of manufacture is pennies per pill. 

 

p.s. I am currently taking 20mg per day and am near PCRU (i.e. <0.01%). I did take 40mg one day and 20 the next for a time a couple of years ago and the prescription cost was unchanged.

My experience with Gleevec differs.  The pharmacy sends me 15 - 400 mg tablets every 30 days and charge the insurance company half of what 30 tablets used to be billed at.  At least that's what the paperwork that comes in the package says.  I suppose it might be different if they were sending 60 - 100 mg tablets?  My $100 copay is still the same of course.


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%


#6 Buzzm1

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Posted 10 January 2016 - 08:34 PM

My experience with Gleevec differs.  The pharmacy sends me 15 - 400 mg tablets every 30 days and charge the insurance company half of what 30 tablets used to be billed at.  At least that's what the paperwork that comes in the package says.  I suppose it might be different if they were sending 60 - 100 mg tablets?  My $100 copay is still the same of course.

Gleevec is priced per pill.  100mg pills cost roughly 27.6% ($100 each) of what the 400mg tablet cost ($362 each).


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


#7 SUE

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Posted 10 January 2016 - 10:50 PM

Scuba,

 

Did you notice any difference in side effects when you were alternating between 40mg and 20mg compared to when you were taking just 20mg?


Dx  April 2013, FISH 62,  BMB not enough for PCR test; put on Gleevec 400;

 August 2013, FISH 8.7;

Oct 2013, FISH 5.6

Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;

Feb, 2014 PCR  6.8

May,2014  PCR   .149

Aug, 2014 PCR    .015

Nov. 2014 PCRU

March, 2016  went down to 40mg Sprycel

Oct. 2016   stopped Sprycel for a couple weeks due to concern about shortness of breath.  Echo showed mild PAH.

Nov 1 2016  resumed Sprycel 20 mg daily 

Dec 2016  PCRU

March 2017  PCR 0.020

May 2017     PCRU

Sept  2017   PCRU

Dec    2017  PCRU

 


#8 Buzzm1

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Posted 11 January 2016 - 02:12 AM

After a minimum of two years of PCRU, while on TKI treatment, stopping may be contemplated.
 
NOTE: Dosage reduction before stopping TKI treatment may help moderate withdrawal effects.
 
the average odds of successfully stopping are basically 50/50 and while there are no absolute guarantees, TKI response, duration of PCRU, length of time on TKI's, and age, do appear to add to your odds of remaining TKI-free Stop Study Compilation
 
After stopping, if you are going to relapse (relapse is defined as losing MMR), the odds are very high that you will do so within the first four months (more than 80% of relapses occur within the first 4 months), >95% of relapses occur within the first six months).
 
A percentage of people stopping TKIs lose PCRU, but don't lose MMR.
As an example: STIM2 http://bit.ly/1IbwZuh2011
treated only with imatinib; DMR of at least 2 years duration
76 of 124 (61%) remained treatment free ... However 41 experienced a BCR-ABL RQ-PCR fluctuation without clear molecular relapse. In this so-called-fluctuation group of patients, 7 were found positive once, 6 twice, 12 patients between 3 and 5 times, 10 patients between 6 and 10 times and 6 patients more than 10 times, confirming that BCR-ABL reappearance does not mean automatically clinical relapse (loss of MMR).
 
If you relapse, lose MMR, go back on TKI half-dosage, possibly less, and you will almost certainly regain PCRU within a few months.  If it took you a longer than average time to reach PCRU initially, it may again take you a little longer to regain PCRU.
 
If you don't relapse in four months, the odds of remaining PCRU indefinitely climb rapidly, especially after six months.
 
ASH-Report #1: Stopping CML treatment for therapy-free remission http://bit.ly/25qpGrd

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 scuba

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Posted 11 January 2016 - 10:19 AM

Scuba,

 

Did you notice any difference in side effects when you were alternating between 40mg and 20mg compared to when you were taking just 20mg?

 

No side effects on 20. After taking 40mg, I had a minor headache for a day or two which faded. I took 20 one day/ 40 the next for only a 3 month period (one PCR to the next).


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#10 scuba

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Posted 11 January 2016 - 10:22 AM

My experience with Gleevec differs.  The pharmacy sends me 15 - 400 mg tablets every 30 days and charge the insurance company half of what 30 tablets used to be billed at.  At least that's what the paperwork that comes in the package says.  I suppose it might be different if they were sending 60 - 100 mg tablets?  My $100 copay is still the same of course.

 

Interesting - that's not my experience at all. At diagnosis, I started with Gleevec 400mg. - but had to reduce dose to 300mg. at the beginning. The price charged to the Insurance company was within a few dollars. When I switched to Sprycel 70mg as the starting dose, its price was only a few dollars higher than when I was put on 20mg.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#11 chriskuo

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Posted 12 January 2016 - 02:35 AM

You really don't know what the insurance company pays the drug company.  Those deals are usually considered proprietary information.

The amount shown in the paperwork is no more reliable than a car dealer's invoice and maybe less so.  What you know if how the drug is placed on your company's formulary, which determines the amount of the copay.  If you are getting an expensive branded drug on tier 2, the insurance company has probably cut a better deal with that manufacturer than with competing drugs.

 

if you are in catastrophic phase coverage under Medicare Part D and you are paying the maximum 5% copay, you have a rough idea of the cost to that plan.



#12 Red Cross Kirk

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Posted 12 January 2016 - 11:12 AM

You really don't know what the insurance company pays the drug company.  Those deals are usually considered proprietary information.

The amount shown in the paperwork is no more reliable than a car dealer's invoice and maybe less so.  What you know if how the drug is placed on your company's formulary, which determines the amount of the copay.  If you are getting an expensive branded drug on tier 2, the insurance company has probably cut a better deal with that manufacturer than with competing drugs.

 

if you are in catastrophic phase coverage under Medicare Part D and you are paying the maximum 5% copay, you have a rough idea of the cost to that plan.

So are you saying that the explanation of benefits reports that the insurance company provides aren't accurate?  Below is an excerpt of the year end report. Does anyone know how much profit the pharmacy makes on expensive drugs like TKIs?

 

 

Date Filled - Prescription ID - Claim ID - Drug Name - Qty - Charge Amount - Allowed Amount - Deductible Amount - Copay Amount -  Coinsurance Amount - PacificSource Payment  - Paid Date
1/22/2015 000000001399885 154035028200 GLEEVEC 30 $9,339.53 $9,339.53 $0.00 $75.00 $0.00 $9,264.53 1/24/2015
2/23/2015 000000001488467 154060032500 GLEEVEC 30 $9,339.53 $9,339.53 $0.00 $75.00 $0.00 $9,264.53 2/25/2015
3/18/2015 000000006463080 154079913800 AMOXICILLIN 20 $4.41 $4.41 $0.00 $4.41 $0.00 $0.00 3/20/2015
3/30/2015 000000001488467 154089230600 GLEEVEC 30 $9,339.53 $9,339.53 $0.00 $75.00 $0.00 $9,264.53 4/1/2015
5/14/2015 000000001488467 154132724800 GLEEVEC 30 $9,339.53 $9,339.53 $0.00 $100.00 $0.00 $9,239.53 5/16/2015
6/29/2015 000000001488467 154167344000 GLEEVEC 30 $9,339.53 $9,339.53 $0.00 $100.00 $0.00 $9,239.53 7/1/2015
8/17/2015 000000001488467 154315845500 GLEEVEC 30 $10,264.15 $10,264.15 $0.00 $100.00 $0.00 $10,164.15 9/4/2015
11/2/2015 000000002291051 154411082800 GLEEVEC 30 $10,264.15 $10,264.15 $0.00 $100.00 $0.00 $10,164.15 11/4/2015
12/29/2015 000000002380011 154474255300 GLEEVEC 15 $5,132.07 $5,132.07 $0.00 $100.00 $0.00 $5,032.07 12/31/2015
Prescription
Count: 9 $72,362.43 $72,362.43 $0.00 $729.41 $0.00 $71,633.02


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%


#13 Buzzm1

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Posted 12 January 2016 - 02:28 PM

I'm on Medicare; people on Medicare tend to be charged higher prices on drugs, so the amount that I was charged is higher than what Red Cross Kirk (RCK) paid, but other than that, the pricing of Gleevec by pill/tablet correlates with his pricing and Medicare pricing, including the Novartis Gleevec 10% price increase in August.  

 

In December, 2015 I paid $6,000 for Gleevec 60x100mg (6,000mg).

In December, 2015 RCK paid $5,132 for Gleevec 15x400mg (6,000mg)

 

If RCK filled a Gleevec 60x100mg Rx, he would be charged around $5,430 (there's a premium charged on 100mg pills) 


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


#14 chriskuo

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Posted 12 January 2016 - 05:47 PM

If you are looking at a commercial/employer plan, the indicated drug cost may not be reflective of the true net cost, because of the discounts and rebates that surround the pharmacy benefits structure.  The rules for such plans are not as strict as for Medicare plans.

Large employers and PBMs can get substantial discounts and rebates (which may be after the fact).   The negotiated price may get the drug on a lower tier in the formulary, but does not directly increase the amount the patient or government pays.

 

On Medicare drug plans, the price charged by the drug manufacturer affects the amount paid by the government and by the patient.

Therefore, the government rules around transparency of drug pricing in that market are much stricter.  Also, this is related to the reason why drug manufacturers do not offer copay assistance to patients with Medicare drug plans.

 

Most of the revenue and profit on TKI sales goes to the manufacturer.  However, it is a very good business for PBMs.

Novartis has been selling more than $2 billion of Gleevec in the US annually.  With its R&D long since recovered, much of that falls to the bottom line.



#15 Red Cross Kirk

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Posted 12 January 2016 - 11:53 PM

Hopefully the drug companies are putting some of those profits back into research on new therapies like ABL001.


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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