Jakafi (ruxolitinib) is a relatively new drug on the market prescribed for some MPN patients who don't respond to other types of oral chemo. A recent study indicates it could be a good treatment for ET. (Right now, the FDA has approved Jakafi for myelofibrosis and polycythemia vera, two of ET's sister MPNs.).
Good as this news is, it raises concerns about the high cost drugs for rare diseases.
While the Orphan Drug Act offers companies some incentives to develop drugs like Jakafi, these meds are usually expensive. Jakafi runs about $7,000 a month, or $84,000 a year (considerably more than the median yearly income of $50K for American families). Manufacturer Incyte (partnering with Novartis) says it will provide help for those who can't afford the drug.
If your doctor mentions Jakafi as a possible medication for you now or in the future (as mine did), you might want to call your insurance company (always a barrel of laughs) to find out if Jakafi is covered. I put that question to my HMO helper person, who said that Jakafi was not yet in my policy's formulary. Translation: No.
Will the cost of Jakafi go down? Probably not right away. Manufacturers get to hold on to their patents for 20 years, which means there won't be a cheaper generic version until 2030. And given the small number of patients for whom the drug is approved, there won't be any volume business that will drive down the drug cost.
Meantime, hydroxyurea (trade names Hydrea and Droxia) still seems to be the go-to drug for ET, though there are others. The Leukemia and Lymphoma Society's fact sheet (in the links at right) can give you more info about these older drugs. GoodRx.com is a handy Web site that can help you search for meds in different pharmacies in your area to determine costs.
I'm not panning or promoting any drugs here, but many of us in managed care do have to be vigilant about drug costs. Anybody with experience with oral chemo for ET? Please report in!
Be well.
What about Anagrelide? Could Jakafi replace a cheap drug like Anagrelide if approved for ET?
ReplyDeleteYes, as I understand it, Jakafi is an alternative to both Hydrea and Agrylin. Do check with your doc about whether this drug would be right for you. I have heard that some doctors are prescribing it off-label in the States for ET already. Not sure if drug cost assistance programs cover off-label use, though, and many insurance companies won't. Very expensive out of pocket!
ReplyDeleteI was denied the first go round for the Jakafi, had no real understanding how expensive it is! We are currently in appeal with the insurance company but I do not tolerate Hydroxy well.
ReplyDeleteBest of luck with the Jakafi quest. There are some links at right that take you to sites designed to help people better afford their meds.
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