You are here

For US patients

Categories:

Hello all, for those in the US who are paying too much for Imatinib: my insurance made me pay $1400 for my latest refill of 400 mg generic Imatinib 1 month supply. This is highway robbery. I have done a bit of research and it seems that every group health insurance plan (employer provided) negotiates with a pharmacy benefit manager (PBM) to have a drug formulary. The negotiation results in a list of drugs that the insurer will pay for, and at what price. My insurance happens to pay $6800 for a month’s supply of Imatinib ($228 per tablet). At the beginning of every year I must pay up to my deductible (this is complicated so I won’t try to explain here) or they will not process my refill. After that it can be up to $150/month.

So after doing some research I found that there are alternatives such as the new Mark Cuban Cost Plus Drug Company   https://costplusdrugs.com/  Which charges me only about $50/month for my Imatinib as long as I pay myself, and not through insurance. Obviously I am much better off with this than my terrible health insurance.

(I am also going to see a different CML specialist next week to see if I can get a dose reduction! That might save some money too, and of course has many other benefits, if he determines I am eligible.)

If you are in the US, and paying too much for your prescriptions, try this new company, or at any rate do some research. It can make a huge difference! I have never found a good US version of “CMLSupport.org.uk” — if anyone knows of something, please post here. I would be happy to pass this along there.

All best to everyone.

Justine

 

I’m so glad you posted this, I was just reading about this new online company and couldn’t believe the price for generic imatinib! $47/month seems unbelievable.

I’m in Canada and hoping somehow I might be able to order or hoping that this disrupts the industry enough that we might get some more cheaper options here.

I read this as well.  That is great news.  Nilotinib does not expire (patent) until 2028 but it is still a relief that something like this exists.  Keep us posted once you get your meds and get some lab results back.  Thanks for posting.

Piano girl — I thought things were much better in Canada than in the US. Do you also pay too much?? I hope this or something like it can help you!

Update: I signed up at cost plus drugs.com (the site I posted before). It’s free to sign up. Then I asked my hematologist to send my imatinib prescription there, which he did quickly. All I had to do was order one month’s supply online, and pay the $52 with my credit card ($5 postage). It arrived a few days later in the mail! It could not be easier. They will send a reminder when it’s time to refill. I will save so much money this way, and will worry so much less. I have lost a lot of sleep over the last 5 years, wondering what I would do if I couldn’t come up with the money. What a wonderful relief!

What manufacturer produces the imatinib do they send you? Is it the same one every month?

 

Great question about the manufacturer. For several years it was Teva. In the last year or so it has changed a lot.  Dr Reddy’s and Apotex are on the label more recently but it seems to change every month. Now with the new online pharmacy my first refill was back to Teva. I don’t know why it would change so often. It doesn’t seem to make a difference in how I feel as far as side effects or labs.

Correction: Most recent refill was from Dr. Reddy’s.

My oncologist wants to change me to generic Gleevec because of development of pleural effusions with Syprcel.

So I have been researching generic Gleevec, and am concerned about the pharmacy changing the manufacturer at will.  In the US do we have any say on which manufacturer is dispensed?

I have been looking into the various manufacturers and the ingredients.  Both Dr. Reddy's and ApoTex list polyethylene glycol (PEG) as an ingredient. Most of the other manufacturers do not include PEG.  Do your research on PEG.

 

Hmmm, interesting question S Davis — I don’t know how to request a specific manufacturer of imatinib generic. After my recent experience I feel relieved to have access to it in any form. But I see your point. Unfortunately I don’t think we have any control over this. If you learn otherwise, please share what you learn! Thanks

Correction.  I think Nilotinib patent expires in 2023 for US.  That would be a big relief if it were possible to buy a months supply for under $100.00.  That changes everything regarding prescription.  Really what I hope is that this has a ripple effect in big pharma reform.  When you can get it cheaper it will cause others to compete and the end user wins.

Really depends on what you mean by better.  I think we can more easily see a doctor whenever we want and schedule medical procedures, but certainly there is backdoor deals and lack of transparency in the medical and pharmaceutical industry that causes prescription prices to balloon.  If we could get rid of the lack of transparency in pricing it would be a great system.  Hopefully this costplus pharmacy will be a catalyst in eliminating the lack of transparency.  I hope so.

Do you need to pay for nilotinib yourself in the us ? 

I thankfully do not.  This is usually covered by private, employer provided insurance.  Although I suppose this would be a possibility in the future if this costplus pharmacy brings the price down to the levels that it has for Imatinib.

stephen, I take nilotinib 150mg 2x/day. I am on Medicare and my initial cost for this drug in Jan/Feb (what I pay out of pocket) is $3,000. At that point the cost for all of my drugs is reduced drastically, but not enough as far as I am concerned! For the rest of the year I pay $404/mo for nilotinib.

$404 a month is not reasonable in my opinion so I hope that Nilotinib will find it's way onto the costplus list when the patent expires.  If it were $50 a month like what is seen for Imatinib I would say that is reasonable and would take a lot of stress away from the cost factor of TKI's.

ColoradoGuy, absolutely. I'm fortunate to be able to afford the upfront costs of these drugs. $3,000 is a big bite for most of us. We are trying to encourage Congress to spread out the initial cost over the year. From March through December I pay 5% of the retail cost of specialty and name brand drugs. All told my meds will cost about $11,000 this year. I would love to see the generic nilotinib, whatever that will be, around $50.

 

I pay 3000 first calendar year, and 80 a month after that for Imatinib 400 mg.

Even at low dosage, the cost of Sprycel, Tasigna, Bosulif, and Iclusig are exorbitant for U.S. CML patients with Medicare.

The side-effects of low dosage Imatinib are unlikely to be an issue, while the effectiveness should be comparable in most cases, so I wouldn't be surprised if some U.S. CML Medicare patients on low dosages of the above TKIs for the longterm, switch to the low dosage generic Imatinib which is almost free at this point in time.  It's at least a consideration if cost is an issue.

Imatinib (Gleevec) - Mark Cuban Cost Plus Drug Companyhttps://costplusdrugs.com › imatinib-100mg-tablet
A 30 count supply of 100mg Imatinib will cost: Your drug cost with us: $17.10. 

I heard an interview with Mark Cuban recently. He said his company is adding many more medications soon (I think he said a thousand) so we should keep checking for other TKIs.

Justine, the other TKIs will remain under U.S. patent for years to come; it is unlikely that there will be much of a price decrease, if any at all, until they come off patent.  

I believe Nilotinib comes off US patent July 4th 2023.

ColoradoGuy, although I saw the same information, that you are referring to, posted on the web, I am highly skeptical of the July 4, 2023 U.S. patent expiry for Tasigna.  I have a call into Novartis (1-888-669-6682) in an attempt to find out the U.S. patent expiry date and when a generic for Tasigna might become available in the U.S..  

If the Gleevec generic provides any indication, it can take 3-4 years, after a generic becomes available, to reach what might be considered an affordable price.  Usually reached after enough companies are manufacturing the generic.

 

India jumps on that pretty quick but even three year wait to pay $50 a month is a welcome change.

I like Trey's idea of rotating drugs so the side effects never have a chance to take hold for those of us who tend to develop all the "fun" side effects even though the drugs work very well for us. I would love to switch back to imatinib but a friend of ours looked at my liver toxicity profile and said I should never try it again. He was director of liver services at UCLA so I tend to believe him. My monthly cost for 300mg of nilotinib is $431 in the catastrophic phase on Medicare. When I was working our drugs were covered under major medical (no separate drug plan) and we had a $1,000 deductible. There is no rhyme or reason for drug costs in the US.