Funding for Ruxolitinib

[Heather270240]

I have ET JAK2 and been on HU for 4 years which has given me serious side effects the latest severe breathing problems. As an alternative medication my haematologist has recommended Ruxolitinib which she said unfortunately she is unable to fund. Perhaps those of you in the UK and are on this medication could tell me please who funds it. Many thanks.

[skipperL]

I am prescribed it by my NHS hospital. I gather it is extremely expensive

SkipperL

[hunter5582]

See costs below. The drug formularies prefer medications that cost $1.42/tab to those that can cost $229.31/tab - $458.97/tab. Just for one more comparison, the other option, Pegasys, costs $4470.68/month. So to roughly compare daily costs, 1 day of Pegasys costs $149.02.

This decision is about saving the healthcare system money. The well being of the patient is only one factor in the decision. Prescribers often have to advocate within the system to access more expensive medication. This can take a lot of time and effort, even when the more expensive medication is clearly in the patient's best interests. Some systems make this harder than others. There is wide variance here in the USA based on which insurance program you are on. Those in the UK have spoken about differences based on what hospital they are based in. I expect the same thing is true in the Canadian and other nationalized systems.

What is true in all healthcare systems is that assertive patients receive higher quality care. Passive patients do not. You have to be willing to push, work the system of care, and never give up. It can be an uphill battle, but one worth fighting, I hope you are able to access the medication that is in your best interests.

Cost From ePocrates

Jakafi

Manufacturer: Incyte Corp.

DEA/FDA: Rx

Approximate Retail Price

from goodrx.com/Jakafi

oral tablet:

5 mg (60 ea): $18,742.70

10 mg (60 ea): $27,538.10

15 mg (60 ea): $15,381.20

20 mg (60 ea): $13,758.60

25 mg (60 ea): $14,308.00

Hydrea

Manufacturer: Bristol-Myers Squibb Co.

DEA/FDA: Rx

Approximate Retail Price

from goodrx.com/Hydrea

oral capsule:

500 mg (60 ea): $111.99

Generic hydroxyurea

Manufacturer: generic

DEA/FDA: Rx

Approximate Retail Price

from goodrx.com/hydroxyurea

oral capsule:

500 mg (60 ea): $85.99

Pegasys

Manufacturer: Genentech, Inc.

DEA/FDA: Rx

Approximate Retail Price

from goodrx.com/Pegasys

solution for injection:

180 mcg/mL (4 vial, 1 mL): $7,675.89

solution for injection:

135 mcg/0.5 mL (1 box, 4 pre-filled syringe autoinjector): $4,470.68

180 mcg/0.5 mL (1 box, 4 pre-filled syringe autoinjector): $4,470.68

solution for injection:

180 mcg/0.5 mL (1 box, 4 pre-filled syringes with needles): $4,808.99

[Heather270240 in reply to hunter5582]

Many thanks for your in depth reply Hunter. I have a telephone appointment with Professor Harrison on Tuesday AM so I will hopefully know which meds she will recommend Pegasys or Ruxolitinib. Whichever it is Guys St Thomas's will have to fund because the health authority in Maidstone Kent won't. If you remember I have had to come off HU because of severe side effects. Since 9 March I have only been on Aspirin so I will be very glad when it is sorted.

[hunter5582 in reply to Heather270240]

I do recall that we are both in the numbers of people who cannot tolerate HU. The good news is that you were a "good patient." You tried the cheap med first. It did not work for you. That helps to justify the more expensive meds. Hopefully approval for your chosen med will be forthcoming.

[Inca in reply to hunter5582]

It certainly is expensive Hunter.I was on Hydrea for 9 yrs maybe moreI forget the exact date,before it turned on me & I became very ill.

I was hospitalised & put onto Jakavi after lots of blood tests etc.I am English,living & treated in France...fortunately we had decided to be on the French Health System as the UK Health & Pensions ministry had refused to pay my health care as we are here most of the time.

Regardless that we had paid into the system all our working lives !

Since Brexit we are now living in Fr totally.

Your posts are very informative, you must spend a lot of time studying.Best to you.

[ainslie in reply to Heather270240]

It is possible to get Rux in UK on compassionate grounds, I am on it for PV , your Haem can apply if you have failed on the other meds available , Clair Harrison will know all about how to do that or she can advise your local haem. If you havnt tried Pegasys it might be wise to try that first as its more widely used for ET than Rux and for some there may be some disease modification Around 20%+ cant tolerate it and it can take a while to kick in for some but its widely used in the US for ET and many do very well on it, start low dose ie 45mcg and build up slowly if needed

[Alexbits in reply to hunter5582]

these prices are insane, I pay 120 EUR for 180mcg Pegasys prefilled syringe (without autoinjector). It’s retail price.

[hunter5582 in reply to Alexbits]

That is about what I would pay for it too ($100.00 for a 1 month supply of prefilled syringes). My insurance would cover the rest. I expect it works the same with the NHS. The difference in cost is why it can be so hard to access Pegasys in so many systems, particularly for older patients. Ultimately it really does cost that much.

[HazeBlue]

If in Uk it’ll be NHS

[Heather270240]

Many thanks everyone for your replies. I have asked my Haemo to refer me to Dr Claire Harrison for a second opinion. I have a telephone appointment with her on Tuesday morning. I am hoping for a positive result.

[skodaguy]

Hi Heather. Like you I got pneumonitis on HU and had to stop it after 3 weeks treatment. I went to NICE with Prof Harrison to get rux accepted by the NHS for treating myelofibrosis. I have been taking rux since Nov 14 though it was initially funded by Novartis. Has your local health board declined to fund it because you have ET not MF? To my mind it seems they are splitting hairs as rux has been accepted for other MPN's such as PV. I hope your call to Prof Harrison results in them changing their mind. Good luck.

[Heather270240 in reply to skodaguy]

Hi Skodaguy. My Haematologist here in Maidstone Kent wrote in a report to my GP after speaking with me on the phone that it was unlikely that I would be able to obtain funding. She said hopefully Dr Harrison would be more successful. She, my haematologist, agreed that Ruxolitinib was the best medication for me but she can't supply it hence the reason why I am being referred to Dr Harrison.

[Heather270240 in reply to skodaguy]

I forgot to ask how long it took to get approval from the date you saw Dr Harrison. Did you take any meds between stopping HU and Ruxolitinib being agreed?

[skodaguy in reply to Heather270240]

It took around 4 month's for Novartis to agree to supply me and I started it the first Fri Nov 2014 but after NICE approved it the switch was pretty seamless. I did try interferon which just made me itch more and also a combination of thalidomide and dextramethasone but that was ineffective

[Pte82]

Heather, my wife switched from HU for ET, after many years because of side effects, to Anagrelide which had fewer. Her platelets remained near a million until, with the oncologists approval, she used 50 mg of red palm tocotrienol twice a day resulting in a gradual decline in platelets and adjustments in her medication leading to a normal platelet range. Check with your Doctor if red palm tocotrienol could be used until an approved medication is prescribed.

[Heather270240]

Many thanks for info. Will enquire but never heard of it.

[Wyebird]

Sorry to hear you need to change meds. Has your heamo refereed you to Prof H.?

[Heather270240 in reply to Wyebird]

Yes. I have a telephone appointment next Tuesday morning.

[Wyebird]

She is a really lovely person. Hope all goes well

[ts75]

What about anagrelide?

[Heather270240]

My haemo has said it's not appropriate for me because it causes palpitations which I already have with another medication I take. Many thanks for your suggestion though.