Shocking Price of Jakafi

[dogsandhorses]

So I am in the USA. I have ET diagnosed in 2018. Have taken Hydroxyurea since then. I have been having lots of side effects from Hydrea, so my Dr. suggested a possible change to Jakafi. When I called my mail order pharmacy to price it, I was told that for a 90 day supply it would be $20,857, of which I would have to pay 33% or $6,882! How many people can do that? How are so many people on this site able to take it? Is it cheaper in the UK? Seems like lots of people on here are from the UK based on how they phrase things. Would it be cheaper if I asked about Ruxolitinib?

[Otterfield]

In the UK we have the National Health Service. The costs are covered by our taxes so we don't have to worry about the cost of different medicines. I'm sorry that in the US you have to rely on private insurance and even pay up front for part of it yourselves. How on earth do people on low incomes access healthcare? I hope you work something out and are able to get the best medication for yourself. Jakavi is the brand name for Ruxolitinib.

[EPguy]

I'm in USA, still pre-medicare. With private insurance it depends heavily on the details, higher cost insurance gets better coverage(no surprise). I pay zero with insurance and the "coupon" from the company. On medicare it depends a lot on which sort of supplemental coverage one has. I will learn plenty re Rux (Jakafi) next year if I'm still on it.

Have you contacted the pharmacy or Incyte on assistance programs? (below)

incytecares.com/oncology-he...

There is also a work around that is not approved, pill splitting. Neither we nor Drs can recommend it, but it has been done. If your dose is less than 25mg it could help since every size pill is the same cost. I asked the company why it's not approved, they just said it was never tested, not that it was known to be harmful. Of course they have no incentive to test it. So no Dr is likely to Rx this way. Best I can tell it has no coating based on the ingredients and that I can taste it all the way down. Pharmacy person agreed it appears not to have any.

If I end up having to pay like that I would look even deeper into the splitting issue. But to confirm, this practice is not approved.

[EssexDolly]

Ah we have the NHS in the UK and whilst it’s not perfect it does mean in Scotland you don’t pay at all for prescriptions and in England you pay £9.65 each item or you can pay £111.60 a year and then you don’t pay any more however many prescriptions you have. Also, if you have a cancer diagnosis (amongst other things), you don’t pay for any prescription.

[Otterfield in reply to EssexDolly]

Also, once you are over 60, prescriptions are free. Cost has to be considered by consultants and GPs as I think they now have to manage their own budgets, but for patients, care doesn't depend on one's ability to pay.

[Anag]

Hi,

I checked the prices for Jakafi in Austria. On insurance, one pays €6,60 for 56 - 10mg tablets, otherwise, just under €4,000.

Our government med. insurance is thankfully still very strong.

[GarciaB]

I have a two month supply I no longer need. It was part of a pre transplant clinical trial. Wish I could pass it on

[sbs_patient]

I'm on a Medicare Advantage plan that includes prescriptions, and I've been taking Jakafi since August 2022. In the US, each Medicare drug plan has a formulary that assigns its approved drugs to tiers. Jakafi is usually in Tier 5, called by my plan the "specialty tier". The charge for such medications is 33% of whatever price is negotiated by the insurer. A box of Jakafi (60 pills) has a list price of ~$18K, but the pharmacy benefit manager negotiates a somewhat lower price. This applies to the "initial coverage stage". There is also a "coverage gap stage", in which your cost is 25%, and finally there is a "catastrophic coverage stage" in which you pay something like 5%. Basically, you have to pay something like $7K (but this also includes some plan payments) before entering the last stage. In 2023, I am taking one 10 mg pill per day, and after paying about $3400 in the earlier stages, I should be paying $427 monthly for the last 10 months of the year, This comes to something like $7500 for the year. It would be more if I were taking two pills a day, as is commonly prescribed. Please note that Biden's Medicare drug bill from last year will eliminate all catastrophic-stage payments, which would cut the cost considerably. This is a significant change for the better, but of course, that's assuming that Jakafi will remain on next year's formulary!!

Clearly, the drug-cost situation in Europe is not comparable to what we see in the US. The political obstacles to any sort of significant change in this direction look insuperable.

Stephen

[EPguy in reply to sbs_patient]

sbs_patient:

It's working well on 1/day? Rux is short acting so in concept it needs frequent dosing. But so much of real practice is less precise than they make it seem.

Agree the new Medicare rules will make all this easy. If I had/have to pay the big bucks myself it's a huge incentive for pill splitting as some members are already doing. It's not approved this way and can't be recommended, but as I've posted, there seems to be no rational basis for the limitation.

Incyte just had an FDA rejection for a new long lasting formula. Likely they will get it approved in due course, it's officially indicated for 1/day.

[sbs_patient in reply to EPguy]

So far, it's been working fine. I have a tele-visit scheduled for next month with my MPN specialist, and I will ask for her thoughts on dosing. I'd read about Incyte's proposal of a slow-release version of Jakafi, though I hadn't heard that it had been turned down by FDA. I agree that in the end, pharma companies seem to get whatever they want from FDA (and Congress!).

[ETket]

That sounds so expensive! As has been mentioned elsewhere, we are lucky enough to have the NHS in the UK and so I do not have to pay for any of the drugs I take for ET.

[Island-Lady]

I am so sorry you are having trouble with the cost. I am also in the US. When I switched from hydroxyurea because of bad reactions, I choose interferon. I don’t know whether or not this is an option for you, or what your exact diagnosis is, but what I did find was that when I was initially given the price for my medication they gave me an insanely high price. I later called them back and asked them to please research this further. After a few days of researching, they called me back to say that if I injected the Pegasys dose myself, there would be zero charge as opposed to thousands of dollars if I had it injected in the office. Certainly an easy choice for me. Perhaps, if you do some further research, it would be possible that there would be some specifics that would enable you to get a lower price. Just a thought.

I wish you the very best.

[Barney50]

I am 73, female, PV JAK2 positive, diagnosed Nov, 2019 at 69. First on venesection then 2 mo. on HU - could not tolerate. Have been on Jakafi almost 3 years. I have responded well and my MPN specialist monitors my dosing very closely. I started on 10mg 2x daily for approximately 6 mo. then dropped to 5mg2x daily for 13 months. Dosing has stayed between these levels for the past 14 mo. Numbers are all good except WBC which has been consistently 10 - 11. I have a secondary CLL clone but do not have the active disease. Saying this to give background. The cost of Jakafi was a little over $16,500 for 60 5mg tabs in 2020. The 60 10 mg were $23,400. Now, I am on 10 mg AM and 5mg PM which is $28,755. My Medicare plan pays 80% of course but I go catastrophic the first month. My pharmacy, somehow, gets the reminder covered/written off so I have very little out of pocket - less than $800 per year. I was fortunate to get a good drug plan and my premium is only $14.40 per month. I am under regular Medicare - not an advantage plan. To say I am thankful for this coverage is an understatement.

[Meatloaf9 in reply to Barney50]

Hi Barney, I am also 73 and PV. I have a medicare part D drug plan from Wellcare, may I ask what medicare drug plan you have and did you have a hard time getting Jakafi approved??

Thanks and best to you.

[Barney50 in reply to Meatloaf9]

I am under WellCare coverage also - my premium is still $14.40. My last EOB (April, 2023) shows another price hike - $30,305.61 monthly for 90 5mg tablets. Medicare paid $28,790.33. The rest was handled through my pharmacy. I am located in Virginia. I didn’t have any issue getting Jakafi approved because I have stage 1 myelofibrosis. Having a bone marrow and bone biopsy done made approval much easier.

[Nightowl01]

Hiya, I am a Brit retired to Spain 16 yrs ago and diagnosed with Myelofibrosis in 2011. I was put on Rux about 4 or 5 yrs ago and have had no problem with it. I had googled it at the time (as I do with all my meds because of the language barrier) and noticed the cost in the UK was about £3,500 per month but the NHS had approved its use because the results were so high - 98%. At the end of my next appointment my translator had told my Haemo that I was surprised to have been prescribed such an expensive drug (free to me on Spanish NHS) and he replied that "If that's what the patient needs then that's what the patient gets". Well done Spanish NHS!

[dogsandhorses in reply to Nightowl01]

Wow, lucky!