14 replies to this topic

[SUE]

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

 

 

 

[Buzzm1]

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

[SUE]

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

[scuba]

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.

[Red Cross Kirk]

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.

[Buzzm1]

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).

[SUE]

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?

[Buzzm1]

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

[scuba]

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).

[scuba]

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.

[chriskuo]

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.

[Red Cross Kirk]

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

[Buzzm1]

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) 

[chriskuo]

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.

[Red Cross Kirk]

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