Re: Orphan Diseases and USP drug formulary

[Guest guest]

Quoting Larry " I was denied Provigil which would have allowed me to continue

working.

The argument was that Provigil off label for fatigue in CMT....

When an accountant can come between a doctor and his

patient, something must change. "

Honestly Larry, were you denied the opportunity to buy Provigil or did your

insurance deny coverage. These are two different things.

First of all Provigil is $9.00 a pill because that is the price the market is

forced to bear. Not the consumer market but the insurance market. If forced

insurance reimbusement were removed from the equation Cephalon, the maker, would

reduce its prices immediately.

The insurance companies are held hostage by the laws of many states. They have

to pay $9.00 a pill for the pill if it has been approved for certain illnesses.

Chephalon and laws that require insurance coverage are the sole reason that

Provigil is so expensive.

I take Provigil. I think that it is much better than any other stimulant that I

have taken. If my insurance was not forced to cover it, I would gladly pay a

premium... though not $9.00.

Instead of creating laws that force insurance companies to pay outrageous prices

for drugs, perhaps we should be arguing for less regulation so that real market

forces become effective. Then the drug companies would be forced to charge

reasonable prices for their products or the product would not be profitable.

By the way, the profit on Provigil is obscene generating about 500 million in

sales every year. Cephalon is spending over 250 million each year to sell

convice us that we need Provigil. Further the patent on Provigil is expiring

this year, but Cephalon appearantly struck a deal with generic drug

manufacturers to allow it to sell Provigil through 2011 unchallenged, allowing

them to continue to sell the drug at $9.00 per pill.

I think that Cephalon is the real problem. I think we need to petition the

Department of Justice and the Federal Trade Commission to look into Cephalon's

unfair trade practices.

Mike

Nixon, President

Wherever Media, Inc.

(801) 318-3893

[Guest guest]

Thanks, Larry!

Ritalin is not Provigil and it's time that insurance companies recognize the

difference. Just because a medicine " fights fatigue " and is cheaper than a

different one, it doesn't make it the correct medical choice.

My mother with CMT 1A was forced to try Ritalin. It made her hyperactive where

she couldn't focus or stay on task and she couldn't sleep. Her body was in

overdrive which can't really be good for us, can it? On Provigil, she and I both

have reduced fatigue issues, better ability to concentrate and stay on task.

I couldn't ever see discontinuing it. I even told the first doctor who

prescribed it for me that he gave me my life back!

It is non-formulary and damned expensive. My insurance covers about 50% of the

cost so I only pay about $3 a pill but that's still a lot of money.

[Guest guest]

Mike,

The Department of Commerce is doing exactly that. A suit is pending,

but ignoring real market forces is short sighted. There are three

players in prescription drug pricing: the VA, Medicare and managed

care. Retail doesn't show up anywhere in the pricing equation. If

managed care was forced to cover boutique drugs they would negotiate

better pricing with the Cephalon's of the world (in full disclosure I

am a stockholder in Cephalon) to lower the cost for their members.

Also, they would have a reason to lobby Commerce Department to to

actively pursue restraint of trade finding against offending companies.

For now, the string has to be pushed through publicity and individual

state legislatures that have to power to compel insurance companies

that wish to do business in the state to cover the 25% of the

population that might be helped if controls on medication were eased.

-- Larry