Re: Pricing of Gleevec - very long post (sorry)

[Guest guest]

It about the same here In Nova Scotia, my insurance is

first pay

of 80%, after the initial 100 per family deductable.

Then the Province will pay the rest which is about

$700 per month at 400 mil a day. Now I have to pay a

deductable to the Province of 740

dollars.. this is called co-pay. But my regualar

insurance with dental medical and private room and

coverage for away (like in the US)this covers the wife

as well. cost me about 80 per month.Which all boils

down to around 1700 or 1800 a year. I feel lucky at

that.. For I have friends in the USA who are in a fix

due to all their medications. not necessary Gleevec

but all other drugs.. Where my wife is from people

from the mid-west states come across the border and

fill their drugs once a month so I am told they have a

special tour bus..just called drug run...

So I feel lucky to be covered and if Gleevec is

supplied to people who cannot afford it by the company

and we pay a bit higher then I say its worth the

extra. We are all in this leaky rowboat together...

SkipD

--- Cheryl-Anne Simoneau

<cheryl.simoneau@...> wrote:

> Hello Everyone,

>

> The price of Gleevec is always an interesting topic

> to discuss and has been

> a bit of a nightmare for me these past few months.

> Let me give you some

> background: Here in the Province of Quebec in

> Canada, the maximum anyone

> will pay for Gleevec is $800.00 per year (the cost

> of Gleevec is about

> $37,000 based on my current pharmacy cost),

> regardless of your income. The

> provincial government has allowed Gleevec to be

> placed in a special category

> of drugs. My private plan covers 100% of the cost

> of my drugs. If you have

> a plan that only covers a portion of your drug

> costs, then the Government

> subsidizes the rest. If you do not have a drug plan

> you are fully

> subsidized. However, my drug plan is maxed out, so

> I no longer get dental

> and eye care coverage. So, that means that 100% of

> my health plan is

> dedicated to paying for Gleevec. This also means

> though, that since the

> government is subsidizing the cost of this drug they

> can place certain

> requirements as far as pricing is concerned. From

> my perspective, I think

> the plan here in Quebec is fairly good and is

> definitely a step in the right

> direction. My feeling is that any patient with a

> catastrophic disease (and

> this disease can certainly be in this category)

> should not be so severely

> penalized with healthcare costs, after all it is not

> like we chose to get

> this disease in the first place.

>

> But back to my nightmare. In October I went to have

> my prescription filled.

> The pharmacist advised me (and painfully so, we are

> good friends) that the

> cost of this already expensive drug had just

> recently been increased. I

> said, impossible, this category of drug cannot have

> a price increase

> according to the provincial formulary laws. So, the

> investigation into the

> price increase was launched (by me of course). I

> work in the healthcare

> industry.. Anyway, I found out the drug distributor

> was putting an increase

> on the drug. Why? because Gleevec was not available

> at their warehouse in

> Quebec (which the law clearly states it should be,

> but that is another

> story). The importance of this is that Novartis has

> implemented a price

> increase on Gleevec of 3% for patients in Ontario

> and 4% for patients in the

> rest of Canada (except Quebec). So, the drug

> distributor, probably wanting

> to get in on the action passed along the 4% drug

> increase to my pharmacy,

> who was obliged to pass it along to me - or try to

> anyway. I have been

> holding off telling everyone about this as the blame

> is flying all around.

> I spoke with the VP of the drug distributor who

> absolutely deny this. They

> (the drug distributor and Novartis agrees) want me

> to report the name of my

> pharmacist, which I am not going to do as he is a

> small independent family

> owned business. Eventually I paid my usual price

> for Gleevec.

>

> In the meantime, back in the early part of

> September, Novartis approached me

> to participate as an editor on a CML patient

> magazine. Actually it was the

> communications company who contacted me. According

> to a marketing survey,

> patients surveyed said they would like to have a

> magazine and website that

> would provide good information for patients. So, I

> agreed to review the

> contents from the patients perspective. I didn't

> really give much thought

> to any of it.

>

> UNTIL I HEARD ABOUT THE PRICE INCREASE! I wish I had

> much more finesse in

> dealing with issues like this, but I do not. I am

> really disturbed by this.

> I am very sure that if patients were surveyed and

> asked what they want they

> would have said no to a magazine if they would have

> known that the price of

> the drug would be increased. Additionally I have

> heard that adherence

> (replaces the word compliance) is a big concern

> these days. Novartis would

> like to make sure that everyone takes their

> prescribed amount of Gleevec.

> To that extent, they have sent letters out to

> pharmacists and of course they

> are also working very close with our doctors. If

> Novartis is really that

> concerned about keeping us all " adherent " to the

> drug then they certainly

> should have provided our doctors with the

> appropriate methods for

> determining drug serum levels. This would help

> patients who are getting too

> much in their system or not enough. Additionally, I

> cannot understand how a

> price increase would help with " adherence " .

>

> You cannot imagine the amount of flak I am taking on

> this as I have been

> having discussion with lots of people and it has not

> been all very nice.

>

> Anyway, I am not saying that profits are sinful,

> after all this is a

> capitalist society we live in. I just find it very

> disturbing to know that

> we are going through hardships with this disease in

> paying and accessing

> this drug, while the drug company spends money

> marketing to us and

> " educating " us. Furthermore, I am not sure that

> this disease category

> should be handled so " commercially " . Even though I

> work in marketing in the

> health care industry I find it inappropriate to

> conduct any " marketing "

> activities to patients like us or patients with

> other life threatening

> diseases for that matter. We are a captive

> audience, unfortunately. I

> think it is adding insult to injury to market to us.

> Do we actually need a

> drug company telling us and reminding us that we

> have a life threatening

> disease? If any drug company is so intent on

> spending our drug money (well

> we pay for it from our drug plans or tax dollars,

> don't we) then they should

> put it back into research so that we can find a cure

> that we will be able to

> afford.

>

> With all this being said, the meetings next weekend

> of the CML Society are

> open to everyone. Neither the doctors, nor Suzan

> and I are being paid

> anything (as has always been the case) for

> organizing and conducting these

> meetings. The easy part in organizing these meetings

> has been working with

> Dr. Pierre Laneuville and Dr. Jeff Lipton. I really

> enjoyed meeting Dr.

> Druker and many other doctors as ASH. We are very

> fortunate to have doctors

> like this.

>

> If anyone has any thoughts or comments on this, I

> would gladly welcome them.

>

> Peace,

> Cheryl-Anne

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

At 12:46 PM 1/22/06 -0500, you wrote:

> If Novartis is really that

>concerned about keeping us all " adherent " to the drug then they certainly

>should have provided our doctors with the appropriate methods for

>determining drug serum levels. This would help patients who are getting too

>much in their system or not enough. Additionally, I cannot understand how a

>price increase would help with " adherence " .

>

>You cannot imagine the amount of flak I am taking on this as I have been

>having discussion with lots of people and it has not been all very nice.

HI Cheryl-Anne,

I am wondering if Novartis is starting to see the writing on the wall. When

Gleevec was approved, they had a monopoly.....it was this drug or

interferon....yah, right!! Now, there are 2 new drugs on the doorstep, with

approval of BMS expected within 6 months or so. Also, we know they read

Jerry's diary and list .....and how many people are raving about how much

better they feel on BMS then they did on Gleevec. People will have the

option of switching drugs when BMS is approved, even just for quality of

life issues. Dr. Druker told me that he thought that most people on 800mg

of Gleevec would feel better on BMS. He basically said that theoretically

BMS should have more side effects (well, to the blood anyway because it is

more potent)......but have less side effects over-all because the dose is

so much lower........so less drug in your system to cause side effects.

IE.....you might take 100mg BMS (which I am not doing)........vs 400 - 600

or 800mg of Gleevec. Maybe Novartis's concern is not that we are being

compliant........but in selling the most drug!! so of course, they want us

to take the full Rx'd dose. Novartis will have a 2nd generation drug

(AMN107) but it won't be on the market as soon as BMS......Dr. Druker

thinks these 2 drugs are really comparable, so if BMS gets the market

first.....where will that leave AMN and Novartis???

Myself....and I have not really been reporting my BMS journey to this

list....I have been on BMS (100mg once a day) for about 9 weeks. I have not

had any problem with dropping blood counts and going off drug.......mainly

because I was only 35% ph+ at the start of my BMS trial. I did have some GI

issues........and quite a bit of discomfort (the bone, joint, muscle pain

that some initially have with Gleevec but I never did) and some peripheral

neuropathy (numbness in toes/feet.....this is an uncommon side effect but

has been seen.........and I seem to have it controlled by a supplement

suggested by my naturopath and approved by OHSU).

The improvements for me on BMS:

no puffy eyelids in the AM, no watery eyes, no eye bleeds (yet);

my vocal cord edema and raspy voice from Gleevec is clearing;

I think I have less fatigue....it was hard to tell at first because I was

resting because I was so sore;

the pills are a snap to take....with even just a small meal.....and no

stomach upset or acid reflux (a big problem for me on Gleevec, and I was

taking it twice a day);

What we are really looking for with me is a better cytogenetic

response.....that is the main reason for switching drugs...........but the

soreness is getting less and I seem to have the neuropathy controlled at a

low level..........so overall this drug is seeming easier to take and fewer

side effects.

That's my 2-cents,

We need to remember that as patients we are consumers and we have buying

power....at least we will when we have other drug choices!! Let us know if

there is some way that we can help you in any way with the 'things' you

take on for all of us.

Best to you,

C.