Mayzent's price declared too high

[agate]

The US group, Institute for Clinical and Economic Review (ICER), has found that the price of the new MS drug Mayzent (siponimod) is out of line with its benefit. The price tag of $88,561 strikes them as being too steep for a drug that isn't doing a thing for those with SPMS that is no longer active.

This is a Reuters press release entitled "US Group Says Novartis MS Drug Price Out of Line with Benefit":

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[Lazarus]

Wow! Hard to know what to think.
I was confused to find that they called progressing secondary MS with no ....damn I forgot. Will go back and read again!

Found it.
“The FDA concluded oral Mayzent was not shown to be effective in forms of MS where relapses have stopped but the disease continues to progress, also known as non-active SPMS.”

Isn’t that strange...the disease continues to progress but is labeled non-active.

[agate]

It looks to me as if the drug companies have been a bit "funny" about their classification scheme. For years we were told that MS might be RRMS, PPMS, SPMS or (more rarely) PRMS (progressive relapsing MS) and that the MS drugs were almost entirely for RRMS only. Exceptions--"off-label use"--were commonly being made as we know.

Then they started saying they had drugs "for progressive MS." But--oops!--it turns out that they didn't really mean SPMS. They meant PPMS and progressive MS where relapses were still occurring.

Very recently they've been describing the whole matter differently. Now there is "active secondary progressive MS" (still having relapses, or what used to be called PRMS) but there's also "inactive secondary progressive MS" (not having relapses but steadily progressing).

[Cherie]

Steadily progressing with no MRI changes in 3-5 years. Inactive progressive. This is what we heard at the Consortium this year. They are advocating spinal taps now in all forms of mS to see if oligoclonal bands (O-bands) are present. If present in ANY form of MS, the drugs can be prescribed but if not, they may not prescribe and if the do, it can be priced out of range of the user to obtain. Siponimod is the only drug on the market for active progressing (SPMS) of MS specifically. All of the drugs...even the older safer ones have gone from $9000/year to $70,000/year or more. This escalation in pricing began with Tysabri which came on the market at $4700/month versus the $1000/month of the 4 injectables so all the current (then ) meds raised their cost so as to be competitive. Now that we have Lemtrada and Ocrevus in the mix the prices have escalated yet again. These are NOT the prices the insurance companies pay but they are the prices those of us on Medicare pay the copays on at 40% of the RETAIL cost of the drug.

[Lazarus]

Steadily progressing with no MRI changes in 3-5 years. Inactive progressive. This is what we heard at the Consortium this year. They are advocating spinal taps now in all forms of mS to see if oligoclonal bands (O-bands) are present. If present in ANY form of MS, the drugs can be prescribed but if not, they may not prescribe and if the do, it can be priced out of range of the user to obtain. Siponimod is the only drug on the market for active progressing (SPMS) of MS specifically. All of the drugs...even the older safer ones have gone from $9000/year to $70,000/year or more. This escalation in pricing began with Tysabri which came on the market at $4700/month versus the $1000/month of the 4 injectables so all the current (then ) meds raised their cost so as to be competitive. Now that we have Lemtrada and Ocrevus in the mix the prices have escalated yet again. These are NOT the prices the insurance companies pay but they are the prices those of us on Medicare pay the copays on at 40% of the RETAIL cost of the drug.

Wonderful information. Thanks. Off to sell peas at the farmers market!