102 replies to this topic

[Dom]

Did anyone else notice that the cost of imatinib just got much higher.  My 100's are now $4,800 (compared to just $1,000 last month).  And the cost of the 400's will show a similar 400% jump.  All of which is reflected in my medicare costs.

 

I put a great deal of effort to (1) figure out the cost of my medicare part D, and (2) change my lifestyle to fit it.  Now everything goes kablooey.

 

How does this happen?  They were making a huge profit at the old cost, now it jumps up!  And I don't trust that this is the end of it.  I suspect we will be seeing prices of $12,000 again, just like the bad old days before it went generic.

[AllTheseYears]

Dom,

 

This news regarding Gleevec cost I find very distressing.  I've been taking Gleevec since it was introduced (hence my User Name) and have felt exploited since the first price hike ages ago. The price hikes keep on coming, even with generic obviously.  The huge profits began early on with the justification from Novartis being that it offers a product that has high demand (since it keeps people from dying) and so justifies rising profits. It's just business, only in America of course.

 

I'm retired and now on Medicare and, like you, I've worked my finances around the huge Part D copays to obtain my treatment. This news truly is distressing.  (Before I was on Medicare, I also lived in a state without oral parity so my copays on regular insurance were high.) I'm fed up with being exploited because I have this inexplicable wish to live and not end up homeless.  I've written letters, made phone calls, talked about this ad nauseam without positive change happening.  Profits are fine; profiteering is not. Any suggestions as to what we survivors can now do?

[Antilogical]

I tried investigating imatinib costs for 2018 before making a final decision on a Medicare plan.  The customer service agent spent hours (no lie!) trying to get a cost for me, as well as pin down which generic company would be supplying the drug.  First, she gave me a cost that was 30% higher than this year's cost, but later she found out that the higher cost was the list price for customers without insurance.  The insurance plan's cost for next year is about the same as for this year.  My co-pays are based off of the plan's cost, and they were the same this month as they were last month.

 

I hope I don't get the same ugly news when I reorder in a couple of weeks....

[Buzzm1]

I tried investigating imatinib costs for 2018 before making a final decision on a Medicare plan.  The customer service agent spent hours (no lie!) trying to get a cost for me, as well as pin down which generic company would be supplying the drug.  First, she gave me a cost that was 30% higher than this year's cost, but later she found out that the higher cost was the list price for customers without insurance.  The insurance plan's cost for next year is about the same as for this year.  My co-pays are based off of the plan's cost, and they were the same this month as they were last month.

 

I hope I don't get the same ugly news when I reorder in a couple of weeks....

Antilogical, pardon me if I am incorrect, but aren't you already paying considerably higher prices for your generic Imatinib than Dom and shweflen.  They both have Express Scripts through Walmart and generic Imatinib had been priced at:

 

Dom:  $1914.17 for 30 X 400mg + $1062.90 for 60 X 100mg
shweflen $1593.82 for 90 X 100mg

 

Just trying to keep things in perspective.

[Buzzm1]

If anything, for those that can, this is another argument for further dosage reduction ... consider it a forced dosage reduction.

With generics, having to pay the full $5,000 (2018) out-of-pocket before reaching catastrophic phase is a real bummer.

[Dom]

"Any suggestions as to what we survivors can now do?"

 

This piece increase is coming from the manufacturer, not from medicare.  As far as I know, the production of generic imatinib is restricted to one company.  Can anyone confirm this?  If it's true, that's the problem -- no competition.  And like I said, it means the increases won't stop.  It's going to get worse.

 

"this is another argument for further dosage reduction"

 

My oncololgist is not even considering dosage reduction.  I actually increased from 400 to 600.  And I can't use the other tki's since I have heart problems.

[Buzzm1]

As far as I know, the production of generic imatinib is restricted to one company.  Can anyone confirm this?  If it's true, that's the problem -- no competition.  

Dom, there are currently three U.S. manufacturers of generic Imatinib, Sun, Apotex, and Teva.

[Dom]

Thanks Buzz. Is there a difference in prices?

[Buzzm1]

Thanks Buzz. Is there a difference in prices?

That's the $64 million dollar question?  We don't yet know the answer..

From everything that has been said, especially if the price using Express Scripts and Walmart goes up, it would appear that there is collusion going on.  Then again, Kaiser's 2018 Formulary has generic Imatinib scheduled as a Tier 2 drug, so perhaps there are other exceptions.

[M.A.]

I am very sorry to hear about all that you in the US have to go through in terms of financing your pharmaceuticals. The system seems cruel for many and also incredibly complex.

 

In Australia we pay $38.80 per month for our TKI regardless of what dosage we are on due to the Pharmaceutical Benefits Scheme (PBS) and for people on welfare it is $6.30.

 

We also have a PBS Safety Net:

 

$1,494.90 for general patients, or

$378 for concession card holders

 

When you reach the PBS Safety Net threshold your medication for the remainder of the year is:

 

up to $6.30 for general patients

free for concession card holders

 

I hope we can keep this current system of ours in place.

 

Not mentioning it to gloat. Far from it. I realise it's complex and the US has a different political and bureaucratic ecosystem to Australia.

 

Just mentioning it to show how another country does it.

 

My heartfelt good wishes to all of you and good luck in getting this latest hike in imatinib price reduced!

[Buzzm1]

Thank you M.A. ... that's great information ...

[chriskuo]

The Australian government negotiates the drug prices with the manufacturers.  The US Congress forbids Medicare from negotiating drug prices so the manufacturers have little to no incentive to control drug prices.  Under commercial plans for under-65s, the insurers/sponsors  can negotiate drug prices but they are never disclosed.  Drug companies can offer copay assistance to the needy to make sure that they continue to buy their TKIs at inflated prices.  To the extent discounts are negotiated, they are pocketed by the insurers/sponsors.

[AllTheseYears]

Of course we know the rising price of Gleevec comes from the manufacturer and not Medicare and no, competition is not the problem  In the U.S., Medicare does not negotiate drug prices.  Medicaid, Veterans Affairs and private insurance companies do negotiate drug prices but not our Medicare program. And, our congress will not cap rising drug prices, even when the prices rise only to expand big profits when R and D costs are already recovered.   Hence when we begin Medicare, as I did years ago, for most of us our copays become much higher than when we were on private insurance, and for me, my deduction also became much higher than when I was on private insurance.  Both copay and deductions vary with individual insurance companies' Part D plans.  I am with Humana and my monthly copay plus rising deductible plus the expensive "donut hole" that must be bridged, seem excessively high. My Gleevec out-of-pocket cost is just south of $11,000 per year.  I suspect other Part D plans are better regarding out-of-pocket and I was asking others for information about their Part D plans.  I might switch, since I face this financial burden for the rest of my life with CML.  Suggestions welcome.

 

What can we do about high Gleevec prices, including generic, I asked?    So far, I can think of only two things: One, continue to fight the seven state legislatures that refuse oral drug parity in their states (LLS is active in this effort on behalf of  pre-Medicare survivors); and, two, keep ragging congressional reps who are in Big Pharma's pocket by telling them our stories. If they don't listen and act, vote them out. The people representing us in government bear most of the responsibility for the profiteering of drug manufacturers. Why wouldn't Big Pharma make all the money they legally can on the backs of Americans who need their drugs to live?

 

To quote the now-popular Alexander Hamilton: Why has government been instituted at all? Because the passions of man will not conform to the dictates of reason and justice without restraint.  ...Big Pharma understandably wants to make as much money as possible, but I think its passion of greed needs to be restrained.

[Dom]

I just went back to Medicare.Gov and got some interesting information.  My current  plan (Express Scripts at Walmart) will be $18,000 for the year.  I was expecting $6,500, given the old price of Imatinib.  Now it seems my best bet is Cigna HealthSpring RX Secure-Extra (PDP) using their mail order service (the mail order is a definite plus).  This comes to $8,500 for the year. 

 

Does anyone have any good or bad things to say about Cigna Part D?  I notice it has only 2 of 5 stars, but it doesn't explain the low rating.

[ROMO]

There are three companies in the US that make generic Gleevec.

Sun, Teva, and Apotex. I read this on Bloomberg.

 

https://www.bloomber...opular-cancer-p

ill-goes-generic-yet-patients-costs-stay-high

 

It is interesting to note that most manufacture of generic drugs are a 

subsidiary of the major drug companies. I have not researched these

companies pedigree. I don't have the Lawyers, Guns and Money. (Zevon)

 

The FDA has applications pending for other companies to make generic

Gleevec. When asked about the holdup the FDA had no comment.

 

The hold up for a price drop has nothing to do with Democrats or

Republicans, and every thing to do with the machine.

 

The high price benefits all the people at the top, and this will be a slow

decline until other TKI's go generic. There is some talk about government

being able to negotiate discounts, it's only talk. A politicians greatest gift.

 

Romo

[Lori's okay]

I have been supremely grateful for good private insurance through my husband's employer and felt guilty knowing how unfair this system is. (we are just a couple of years from retirement and I've appreciated learning from you what lies ahead.) 

 

Novartis even offered me a copay assist card.   What I do not understand and seems outrageously unfair is that they offer these copay assist cards only for private insurance, specifically not for Medicare or Medicaid.  Is that because the company makes so much money off of the private insurance sales and want that to continue?  Are there government regulations that are preventing them from assisting those on Medicare?

 

My soapbox for a long time has been to liken drug prices for life threatening illnesses to the conditions where we outlaw price gouging in emergencies and natural disasters.  This seems like a nearly perfect analogy.  

[chriskuo]

Assistance to Medicare recipients for drugs has to come from charities. Some drug companies push money
through charities that ultimately ends up with needy people but there can't be a direct linkage from the drug company

to the Medicare patient. Medicare cannot negotiate drug prices but they have this rule in place because drug companies
could recoup the copay assistance by raising the drug price and sticking Medicare with higher prices (particularly in the
catastrophic phase (which is where TKI patients quickly end up).

[DJ5627]

Rant ahead:

 

Hello, I just had to add to the discussion.  Due to my dad having been retired military, my mother has Tricare and she pays only a few dollars, relatively speaking, for her Tasigna. 

I, on the other hand, am not fortunate enough to have Tricare.  Or Medicare.  Or a hefty income or savings.  If I get leukemia, basically I die.  Unless it's covered by some charity drug program, but really that should never have to happen at all.

 

Retail is about 90K a year. 

 

How is that not just flat out illegal?  These are wonderful medicines, and we are incredibly grateful for them.  

 

However, the system is just plain criminal that so much money can be made off the backs of sick people.  Obscene.  Remember Pharma Bro? Obscene profits draw sociopaths like moths to a flame.  

 

Many politicians are wealthy to start with, and they aren't in iminent danger of losing their health insurance.  They have no idea what it means to struggle to pay a bill, or to choose between medicine and food, or to end up with no retirement because some greedy drug company demanded a ransom for your life. Some of them try to understand, and to do some good, but they are blocked politically and will continue to be until the American people stand up and hold accountable the people who are standing in the way.   

 

I've never understood why we can't put partisanship aside and simply get about solving problems.  There are working models all over the world that have been tested and proven.   Surely one of them could inspire a model for ours.

 

/Rant 

[shweflen]

I just went back to Medicare.Gov and got some interesting information.  My current  plan (Express Scripts at Walmart) will be $18,000 for the year.  I was expecting $6,500, given the old price of Imatinib.  Now it seems my best bet is Cigna HealthSpring RX Secure-Extra (PDP) using their mail order service (the mail order is a definite plus).  This comes to $8,500 for the year. 

 

Does anyone have any good or bad things to say about Cigna Part D?  I notice it has only 2 of 5 stars, but it doesn't explain the low rating.

I checked the same thing.  I got on Cigna's website and, according to their formulary, 100 mg imatinib is quantity limited to 60 pills per month.  Since I take 300 mg per day that wouldn't work for me.  I called Cigna and they told me I could get a waiver to the quantity limit but the only way to know if they will grant the waiver is to enroll in the plan and then ask.

 

Antilogical, pardon me if I am incorrect, but aren't you already paying considerably higher prices for your generic Imatinib than Dom and shweflen.  They both have Express Scripts through Walmart and generic Imatinib had been priced at:

 

Dom:  $1914.17 for 30 X 400mg + $1062.90 for 60 X 100mg
shweflen $1593.82 for 90 X 100mg

 

Just trying to keep things in perspective.

The last two months, WalMart has increased the cost of imatinib to me from 5% of $1593.82 to 5% of $5044.87 because they had to buy from Sun instead of Apotek

[Dom]

Shweflen, imatinib 400 mg is on the formulary for 30 per month, so it seems strange that they won't allow 300 mg. I bet with the oncologist's authorization, you can get it. My one remaining concern is the rating. It's only 2 out of 5. Express scripts is 4 out of 5.

I'm still waiting for someone around here with real experience with Cigna to give me positive or negative recommendations.