Pricing of Gleevec - very long post (sorry)

[Guest guest]

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