Dear Tom and Alan:
I read the article this morning (“Some good news on MS,” 6/15/17) and while that is the good news, the bad news is that Ocrevus costs something like $186,000/year without insurance.
I have a friend with primary progressive MS (multiple sclerosis) whose clinician wants her to have it but her secondary insurance (AARP) says that her primary Medicare will not pay for the drug.
There are also reports of using nanoparticles to address damage to specific sites. Progress is ongoing to treat this disease but we have to work to make the drugs or treatments accessible to people.
I lost my husband almost six years ago to a “neuromuscular disease of unknown etiology.”
I found out at that time that few neurological diseases have a good outcome. So, I am well acquainted with that helpless feeling.
Tom & Al: Thank you, Dorothy, for your letter.
Please accept our condolences for the loss of your husband. Also, thank you for sending along the email from your niece, an MD in Oregon:
Drugs are generally in 3 categories. Generic, formulary and non-formulary depending on the insurance. Some of the non-formulary drugs can be purchased for a higher copay.
Some need authorization and some are just plain not covered. When a drug comes on the market, it can take a while for insurance companies to figure out where to place it.
You can imagine that Medicare moves slowest of all. Just because it passes the FDA tests doesn’t mean it makes it onto the standard of care.
Tom: Even though we couldn’t find Ocrevus (ocrelizumab) on the formulary list for the prescription drug plans, there is a bunch of information available when we Googled “Ocrevus.”
In particular they mention Dr. S. Hauser and UCSF.
We also found a medication called Zinbryta (daclizumab) referred to specifically for those who tried at least two other medications for MS and haven’t been successful. Yet another medication that pops up is Tecfidera.
Finally, Genentech has set up a website (ocrevus.com) that goes into more detail about possible financial assistance. Calling UCSF Neurology directly is also recommended.
Al: As with Ocrevus, I looked up Zinbryta and Tecfidera on the prescription drug search site through AARP (United Health).
Tecfidera is a tier 5 drug, which means it’s the most expensive. But it is on the formulary.
Zinbryta, on the other hand, is not covered at all. They do indicate that the monthly cost could be as high as $8,000.
Last, but definitely not least, take a look at crushms.org for information on the Reid Family Vineyards annual fundraiser. This year, it’s on July 29, from 3 to 6 p.m.
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