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Re: Future $$$ of Gleevec in the US

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You can always join the movement to develop a national health care

system.

G.

www.cmlsupport.com

[ ] Future $$$ of Gleevec in the US

<snip>

I am very grateful that we have Gleevec, but worry about the price of

this drug. The experts now say that CML will probably not be our

demise. So, with that being said, what is going to happen in our

future and our ability to pay for this lifesaving drug?

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,

With all due respect, I was really hoping to have a CML discussion

about this topic without it turning political.

Lynn

>

> You can always join the movement to develop a national health care

> system.

>

> G.

> www.cmlsupport.com

>

>

> [ ] Future $$$ of Gleevec in the US

> <snip>

>

> I am very grateful that we have Gleevec, but worry about the price

of

> this drug. The experts now say that CML will probably not be our

> demise. So, with that being said, what is going to happen in our

> future and our ability to pay for this lifesaving drug?

>

>

>

>

>

>

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Lynn,

If you think you can complain about rising health care costs without

bringing up the issue of national health insurance, you are being naive.

Drugs are not going to get less expensive magically on their own and

employers are not going to expand health care benefits out of some sense

of social or moral justice. To the contrary, drug prices are going up

and benefits are narrowing in scope while premium prices, copays and

deductibles are also rising. I'm not sure what you think the options

might be since you didn't propose any.

G.

www.cmlsupport.com

Re: [ ] Future $$$ of Gleevec in the US

,

With all due respect, I was really hoping to have a CML discussion

about this topic without it turning political.

Lynn

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> Has

> Novartis broke even with the cost of the initial studies, etc? Is

it

> now all pure profit for them? Will the new competition in CML

drugs,

> like BMS, eventually lower the price of Gleevec?

____________________________________

Hi Lynn,

I think Novartis broke even when the first prescription of Gleevec

was filled. They aren't looking to necessarily pay for the R & D that

went into Gleevec but as a company, they need to be able to fund

research into a myriad of other drugs which for the most part,

fail.

When they spend a few million dollars developing a drug, then find

out that it's useless and can't be marketed, they still have to be

able to pay for it, so it's drugs like Gleevec that bring in

handsome profits that allow them to fund other projects.

Unfortunately, I personally don't think that the BMS drug or other

new " competition " will lower the price much because if you look at

the price of Interferon (which really isn't cheap either), it didn't

change after Gleevec came on the market.

Take care,

Tracey

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,

I said, " With due respect " .. I'm sorry if you think I'm complaining

and being " naive " .. We have never spoken until this time.

I think you misunderstood what I was trying to get across in the

post. We all either have CML or have loved ones that are dealing

with it. The reason that I didn't want to make this a political

forum discussion is because it divides people. Not all members of

this site are from the US and I wanted to talk about it openly,

without feeling slighted or bashed. I'm not sure the US will be

anywhere close to socialzied health care in my lifetime. My main

concern was the cost of the drug, and the manufacturer dictates that-

not our government.

So many CML'ers fought to have this drug marketed. Novartis didn't

want to market it unless it would yield a profit. And.. so it has..

But, longterm, what does that mean to the patients who's coverage has

run out?

So now we hear that Novartis bought out a vaccine company for

billions of dollars recently. Is that my prescription payout that is

funding the buyout? It's all about money. It's always been about

money.

I'm glad Novartis manufactures and markets a drug to save lives, but

I think it's sad and ridiculous that it has to cost so much.

Sincerely, Lynn

-- In , " jennifer g " <jenniferg@c...> wrote:

>

> Lynn,

>

> If you think you can complain about rising health care costs without

> bringing up the issue of national health insurance, you are being

naive.

> Drugs are not going to get less expensive magically on their own and

> employers are not going to expand health care benefits out of some

sense

> of social or moral justice. To the contrary, drug prices are going

up

> and benefits are narrowing in scope while premium prices, copays and

> deductibles are also rising. I'm not sure what you think the options

> might be since you didn't propose any.

>

> G.

> www.cmlsupport.com

>

> Re: [ ] Future $$$ of Gleevec in the US

>

>

>

> ,

>

> With all due respect, I was really hoping to have a CML discussion

> about this topic without it turning political.

>

> Lynn

>

>

>

>

>

>

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Lynn,

A discussion about a national health plan (note that I have not stated

my position on it or made it political; rather it's a health policy

issue) is inevitable when you're talking about health care costs. And

you aren't comparing apples to apples when you try to relate drug prices

in the US to drug prices in other countries. Different health care

systems! (Also, didn't your original email specify that you *were*

talking about the cost in the US, as your subject line indicates?)

I've been taking Gleevec now since it was in clinical trials, so believe

me, I can understand the expense and sympathize with you. I have high

premiums, copays and deductibles. What I'm saying is that,

unfortunately, there aren't any good options -- and that's precisely why

people like you and me are worried about health care costs. There is not

a lot you can do about them!

Seriously, what do you expect? That Novartis is going to drop the price

of a blockbluster drug? Remember that Gleevec isn't used just for CML.

It's also used for GIST, and it's used in countless ways " off label " --

that is, in uses other than what it is FDA approved for, because US

doctors are legally allowed to prescribe a drug for any condition,

whether it's FDA approved for it or not. So just think of the millions

of people who have a condition that appears hopeless, and they see a

drug that has worked so well in several conditions -- they're going to

want it for their condition. So even with the advent of other CML drugs,

Novartis isn't about to lower the price of a drug raking in hundreds of

millions of dollars.

Also, drug companies can come up with numerous legal schemes to extend

patents. And we all saw how hard Novartis fought against the " little

mouse that roared " in India or wherever it was that did try to

manufacture a generic. So don't believe that's going to happen any time

soon, particularly in the US.

So what are the options?

Now, if you want to consider bouncing from job to job to always get new

benefits, and start fresh with your lifetime limits, you could try that.

If you max out your benefits through one employer, quit and go to

another employer. Well, obviously that's not practical, and it's frought

with significant risks -- the new employer may change or cancel its

benefits, you may face extended waiting periods or pre-existing

condition clauses, you could be laid off, etc. Is that an option you

want to pursue?

You can quit spending your money on unneeded items, like movies, makeup,

nice clothing, cable TV, magazines, books, bottled water, Internet,

etc., and earmark it for health insurance, but who wants to live like

that? Do you?

You can open a health care flexible spending account, if your employer

offers one, but it's simply your own money going into the account and

you get a tax break. Or if you qualify, you can check into health

savings accounts, but again, it's your own money funding it. Will that

work for you?

When you say " it's all about money " for drug companies, you hit the nail

on the head. So what do you expect to happen? What solutions are you

suggesting? Novartis agreed to pursue the drug eventually because it

began to realize that it may have broader applications than CML, and

that has panned out.

Really, I would like to hear what ideas you have. Lobbying Novartis to

lower its cost? Sorry, but that's not going to happen. There are many

drugs out there more expensive than Gleevec, and those manufacturers are

not lowing the costs, either.

If you really want an education about drug companies and drug

development, I highly suggest that you read these two books:

1. The $800 million pill: The truth behind the cost of new drugs, by

Merrill Goozner

2. Overdosed America: The broken promise of American medicine, by

Abramson, M.D.

If you rely on Vasella's book, " Magic Cancer Bullet, " for your

information about drug companies or drug development, you'll only be

further disillusioned!

As I said, Lynn, I can completely sympathize. I face the same issues.

But I don't see you or anyone else making any, particularly realistic,

suggestions.

G.

www.cmlsupport.com

Re: [ ] Future $$$ of Gleevec in the US

I think you misunderstood what I was trying to get across in the

post. We all either have CML or have loved ones that are dealing

with it. The reason that I didn't want to make this a political

forum discussion is because it divides people. Not all members of

this site are from the US and I wanted to talk about it openly,

without feeling slighted or bashed. I'm not sure the US will be

anywhere close to socialzied health care in my lifetime. My main

concern was the cost of the drug, and the manufacturer dictates that-

not our government.

So many CML'ers fought to have this drug marketed. Novartis didn't

want to market it unless it would yield a profit. And.. so it has..

But, longterm, what does that mean to the patients who's coverage has

run out?

So now we hear that Novartis bought out a vaccine company for

billions of dollars recently. Is that my prescription payout that is

funding the buyout? It's all about money. It's always been about

money.

I'm glad Novartis manufactures and markets a drug to save lives, but

I think it's sad and ridiculous that it has to cost so much.

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Hi ,

Money!! No matter what form of medical insurance, money is the

driving force. Many countries have a national heath plan and the

amount of personal tax collected seems to have a direct effect on

how well the plan works. We are in dire need of something that is

fair and equitable to all, but how it is financed is the big

unknown. Lets try to come up with some solutions and then push for

reform.

M

>

> Lynn,

>

> If you think you can complain about rising health care costs

without

> bringing up the issue of national health insurance, you are being

naive.

> Drugs are not going to get less expensive magically on their own

and

> employers are not going to expand health care benefits out of some

sense

> of social or moral justice. To the contrary, drug prices are going

up

> and benefits are narrowing in scope while premium prices, copays

and

> deductibles are also rising. I'm not sure what you think the

options

> might be since you didn't propose any.

>

> G.

> www.cmlsupport.com

>

> Re: [ ] Future $$$ of Gleevec in the US

>

>

>

> ,

>

> With all due respect, I was really hoping to have a CML discussion

> about this topic without it turning political.

>

> Lynn

>

>

>

>

>

>

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At 08:54 PM 11/6/05 +0000, you wrote:

>Money!! No matter what form of medical insurance, money is the

>driving force. Many countries have a national heath plan and the

>amount of personal tax collected seems to have a direct effect on

>how well the plan works. We are in dire need of something that is

>fair and equitable to all, but how it is financed is the big

>unknown. Lets try to come up with some solutions and then push for

>reform.

Hi and others,

This is where who we vote for and who we bother to write to counts...

at least for something. Health care costs will be the #1 issue in all

upcoming elections.....health care is a political topic.

If someone is more political and wants to offer any suggestions for

pushing for health care reform, which should benefit all of us, I would

welcome it to the list.

C.

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Hi,

I don't think that this discussion needs to or should become political.

The last time we got into a political discussion (Rob's list) the group

came apart because of politics. Lynn has asked some questions that are

not political and could be answered without getting into trouble.

Drugs are not priced by the cost of their development or manufaturing

costs. In Gleevec's case the price was established by setting it close

to the price of Interferon Alpha, the existing drug for CML at the time.

It is well known that the actual cost of producing a drug like Gleevec

is only pennies per capsule.

Novartis did not spend any money developing Gleevec. The compound came

as part of the package when they merged with Ciba Geigy. So to price the

development cost of Gleevec you would have to come up with some fancy

mathematics which would take into account the cost of purchasing Ciba

Geigy and pro rating the value of the compounds that came with the

company.

You can't isolate Gleevec and try to come up with development cost and

say that they have already made their development money back and can

therefore lower the cost of the drug.

As for the futur with generic Gleevec, we really don't know what will

happen. We do know that a generic version of Gleevec is produced in

India and the cost is 1/10 that of Gleevec. That company also makes a

profit at that price.

When BMS gets to market, my guess is that it will be priced in the

Gleevec price range.

If people want to have a political discussion, I would suggest doing it

via the on line chat. This could happen on the Tuesday evening chat or

at any other time. Talking politics or religion on the main list always

seems to get us into trouble no matter how careful we try to be. At

least this way you know beforehand and have only yourself to blame if

others rub you the wrong way.

Let me know.

Zavie

[ ] Re: Future $$$ of Gleevec in the US

> Has

> Novartis broke even with the cost of the initial studies, etc? Is

it

> now all pure profit for them? Will the new competition in CML

drugs,

> like BMS, eventually lower the price of Gleevec?

____________________________________

Hi Lynn,

I think Novartis broke even when the first prescription of Gleevec

was filled. They aren't looking to necessarily pay for the R & D that

went into Gleevec but as a company, they need to be able to fund

research into a myriad of other drugs which for the most part,

fail.

When they spend a few million dollars developing a drug, then find

out that it's useless and can't be marketed, they still have to be

able to pay for it, so it's drugs like Gleevec that bring in

handsome profits that allow them to fund other projects.

Unfortunately, I personally don't think that the BMS drug or other

new " competition " will lower the price much because if you look at

the price of Interferon (which really isn't cheap either), it didn't

change after Gleevec came on the market.

Take care,

Tracey

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Hi Zavie,

Many thanks to you and all the others who addressed my concerns. I

was not aware of the merger of Novartis with Ciba Geigy. That fact

alone was very enlightening.

For those of you who don't know me, I'm a busy wife and mother to a

young family, so I do not have the time, or energy to devote my life

to CML. It already has enough of me. I am one of the unlucky ones

that has side effects, so many days wipe me out. I am not working and

not sure I will ever be able to.

I live a very simple life, with a very strict budget. ,

many/most of those items you listed, I already live without. I'm

sure others do as well. It is a huge challenge. I'm trying to keep

my family debt free, aside from our home. That aspect alone is a

huge undertaking. I suppose that is my " job. " I don't want my

family to be ruined and devastated in the future when our insurance

stops paying when the money runs out. This will not only affect

myself but my children's futures as well. If we, as patients, need to

stay on this drug for a lifetime, then the cost of this drug needs to

be addressed now.

Was Alpha-Interferon's price set high because it is difficult to

manufacture? (You see I know nothing about pharmaceuticals).

Luckily, I was dx-d after Gleevec came to market, but I am aware of

what other cml'ers went through. I don't think people could have

been on Interferon long term. They would have died first or wanted

to die if they knew they were going to be on the stuff for 30 plus

years!

Has anybody ever asked the Top CML Doctors or Researchers what their

feelings are about the price of Gleevec? If they are suggesting that

our disease is similar other Chronic diseases such as Diabetes, why

is the cost still so high? Are there other Chronic disease drugs out

there that are the same or higher than Gleevec?

Boy, I guess we all picked a champagne taste disease on a beer

budget!

I think some sort of letter writing campaign is in order, starting

with Novartis.

One more thing.... I would like to think that morality still exists

in this world-even if you are running a pharmaceutical company,

Vasella.

Sincerely,

Lynn

> > Has

> > Novartis broke even with the cost of the initial studies, etc?

Is

> it

> > now all pure profit for them? Will the new competition in CML

> drugs,

> > like BMS, eventually lower the price of Gleevec?

> ____________________________________

>

> Hi Lynn,

>

> I think Novartis broke even when the first prescription of Gleevec

> was filled. They aren't looking to necessarily pay for the R & D

that

> went into Gleevec but as a company, they need to be able to fund

> research into a myriad of other drugs which for the most part,

> fail.

>

> When they spend a few million dollars developing a drug, then find

> out that it's useless and can't be marketed, they still have to be

> able to pay for it, so it's drugs like Gleevec that bring in

> handsome profits that allow them to fund other projects.

>

> Unfortunately, I personally don't think that the BMS drug or other

> new " competition " will lower the price much because if you look at

> the price of Interferon (which really isn't cheap either), it

didn't

> change after Gleevec came on the market.

>

> Take care,

> Tracey

>

>

>

>

>

>

>

>

>

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> Boy, I guess we all picked a champagne taste disease on a beer

> budget!

_______________________________

LOL! I never heard this expresion before. Thanks for the laugh Lynn.

Tracey

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I know that Novartis will work with people that are having trouble affording

Gleevec. I believe they don't want anyone to go without it if at all

possible. If the cost is a problem, try contacting them

in Florida

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