Cost of CLL Drugs in the USA: Why is the cost of... - CLL Support

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Cost of CLL Drugs in the USA

whmk
whmk

Why is the cost of drugs such as Imbruvica and Calquence so high in the USA under Medicare? With most Part D insurance, the copay is still 25%. Has anyone found more affordable ways to get Imbruvica?

46 Replies

Try lymphoma Society( LLS)

medicare part d was created in 2003. drug companies cannot offer incentives for people to buy their drugs. Now that legislation works against us for drugs that did not exist at that time. when you get to the catastrophe part of part d it's 5 percent with NO cap. the drugs you asked about are super expensive. there are a few charities that are essentially subsidized by the drug companies to help with your co-pays. Pan and the lymphoma/leukeimia society are 2. also the first month is around 2800 dollars then about 700 per month therafter

809123
809123 in reply to Smith123456

In the UK these drugs are close to $5000 per month unless your qualify for it under the NHS. Most don’t unless you’ve had Pre treatment or have unfavourable genetics.

Smith123456
Smith123456 in reply to 809123

every locality has some kind of issue with these drugs. in usa it's the high co=pays. In other countries the price is free but there are more steps needed to get some of them. depends on your viewpoint.

kff.org/medicare/issue-brie...

i also think based on what you said that your confused by that first co-pay. your YEARLY co-pay for imbruvica is about 11,000 a year. on partd Calquence is about 14,000 a YEAR. on part d. thats because imbruvica is about 150,000 a year and calquence about 175,000 a year

whmk
whmk in reply to Smith123456

Thanks. I called UHC-AARP Part D. They said they cover 75%, and 25% or $3939/mo is patient copay. You must have a different insurance plan than this.

LLS website for copay assistance refers back to the manufacturer. Can you provide a more useful link?

Smith123456
Smith123456 in reply to whmk

i suggest you call back. remember you are talking to call center people they are reading . your first month might be that but the next months leading up to jan 1 will be much less.

Jonquiljo
Jonquiljo in reply to whmk

I have that same plan. Up to the “catastrophic “ phase (around $4000 —out of pocket)it may be 25%. After the catastrophic phase ((generally the 2nd month) it is 5%. Whoever told you 25% was short on facts.

SofiaDeo
SofiaDeo in reply to whmk

Smith123456 is right, the insurance company call center themselves often have the wrong information, as well as the websites. I could see a "copay" of $1600 for a 2 week supply of a med as calculated by the website, but when actually run through the system it was $2900.

newyork8
newyork8 in reply to Smith123456

Are there not medigap supplement policies that would pick up these costs if you had the policy?

Smith123456
Smith123456 in reply to newyork8

not that cover part d drug co-pays- as far as i know

mk2045
mk2045 in reply to Smith123456

Part D has to be purchased in addition to your Medicare supplement. Yes, Part D pays for the drug, but because Medicare can't negotiate drug prices, we end up paying way more than someone with private insurance.

Smith123456
Smith123456 in reply to mk2045

these are 'orphan drugs'. no negotiation anyways

Thanks.

Smith123456
Smith123456 in reply to whmk

aok-remeber the first month has the deductible-the co-insurance and the donut hole in first filling. then you are in the 5 percent catastrophe part therafter.

whmk
whmk in reply to Smith123456

Thanks. I know the customer service reps always read an incomplete answer and the Medicare donut hole is one of the weirdest government rules ever created. The drugs are still expensive but not backbreakingly so.

I understand each pill cost $425, which is outrageous. Talk to your hematologist. I feel blessed that my doctor and clinic is paying for my Imbruvica through grants and going to the pharmaceutical co. for assistance. With my part D insurance, it would still cost me over $2000 a month, which I cannot afford. These kind of costs are really sinful.

Is that based on 3 x 140mg capsules a day?

I am on 1 per day, but I looked it up and each pill costs $425.

since i actually paid for it for a year on part d it's 11,000 dollars a YEAR in co-pays. your saying this based on the first co-pay which includes the deductible/co-insurance/donut hole. after that first one it's about 700 a month

johnl
johnl in reply to Phyllis731

I was on Ibrutinib for two years in a clinical trial, but the Ibrutinib part on the trial was paid by my Part D. The first month's copay was around 2,500. It only took 1 month to go thru the donut and get into catastrophic coverage which was around 700 per month (5%) for the rest of the calendar year and then it starts all over.

I got a grant from the PAN foundation that covered my copays. The doctors office and specialty pharmacy handled the application, but you got to ask.

Another good source of assistance is the Johnson & Johnson patient assistance fund. There is a income limit of 80,000 last I looked. Go to jjpaf.org they have a questionnaire you can fill out to see if you would likely qualify.

john

Thanks for the info. The 2021 Medicare donut hole is bigger at $6,550, and the list price for Imbruvica is higher each year so the total cost per year on Part D is now higher than $11,000, The amazing thing is that with Calquence now available and more competition on the way, Imbruvica (JnJ) is still able to raise its list price every year.

Smith123456
Smith123456 in reply to whmk

Brand name drugs do not price based on competition. Imbruvica will keep raising it's price . drug companies convince doctors into prescribing their products . When Imbruvica goes generic when it's patents run out is when it will see change.

The cost of these drugs, and other life saving drugs, has much to do with how Part D was set up and then signed into law in 2003. Medicare can't negotiate drug prices. And if you are on Medicare, the pharmaceutical companies can't offer assistance. Yes, there are assistance programs, but you have to qualify. We were told that because of our zip code, we didn't qualify (LLS). But the assistance programs are simply a bandaid and don't fix the problem. There are two bills just introduced in the US Senate in the last couple weeks that would allow Medicare to negotiate drug prices. (Note - private insurance companies can negotiate, that's why people not on Medicare, most younger and working, may pay incredibly less than those of us on Medicare.) Two bills that I have found: SB 908 which would also have Medicare set up a formulary, and SB 833 which would require the negotiation of drug prices. When Part D was put into law, none of these life saving drugs were even in the picture. I have a friend who has a different and rare condition who pays $19,500 each year. This person is not sitting around waiting to die, but is a vital, active part of the community. And, they aren't "wealthy" but don't qualify for assistance. There was a bill that was introduced in Feb. 2020 that would have put a cap on out of pocket Part D at $3200 annually. The pandemic hit and nothing happened. I do get upset about all this, because we may not qualify for assistance, but we are not rich! And no matter -- the problem needs to be fixed at the core. It's NOT ok for people who have worked all their lives and find themselves with an unwanted disease as they retire have to bear this burden. Can politics be put aside, and regardless of which side of the aisle the bill comes from, can we learn about it and support it? This isn't about generic drugs for seniors. This is about ibrutinib, acalabrutinib and venetoclax - staples of our treatment for CLL.

HopeME
HopeME in reply to mk2045

You raise fair concerns. However, you must remember that profits drive innovation. Without strong profitability the pharmaceutical industry might never have developed the life saving drugs we enjoy. Personally, I’d rather deal with high prices than limited treatment options.

mk2045
mk2045 in reply to HopeME

The two are not mutually exclusive. Keep in mind that the CEOs, CFOs and others high up in the drug companies have staggeringly high salaries. It's the long whine: we need this money for development. Is that why they raise the prices every year? My friend who pays over $19,000 to control his adult onset cystic fibrosis has had his cost raised $4000 in just this last year. Profits before people is not the only way that drug companies can be motivated to develop drugs. Federal money is also involved in the development, as well as money from the researching institutions like Mayo, MDA, etc.

mk2045
mk2045 in reply to mk2045

One more point --- If profits available to develop new drugs are so critical, why then is it that private insurance companies can negotiate drug prices and some people pay only a small amount compared to the $11,00 - $14,000 that others on Medicare Part D pay? So it's just the money from seniors that makes up the difference?

Smith123456
Smith123456 in reply to mk2045

co-pays for under 65 are dictated by how much an employer wants to put in to employees health coverage. also manufacturer co-pay cards are legal for under 65 but not for medicare

Agree totally!

The cost of these drugs, and other life saving drugs, has much to do with how Part D was set up and then signed into law in 2003. Medicare can't negotiate drug prices. And if you are on Medicare, the pharmaceutical companies can't offer assistance. Yes, there are assistance programs, but you have to qualify. We were told that because of our zip code, we didn't qualify (LLS). But the assistance programs are simply a bandaid and don't fix the problem. There are two bills just introduced in the US Senate in the last couple weeks that would allow Medicare to negotiate drug prices. (Note - private insurance companies can negotiate, that's why people not on Medicare, most younger and working, may pay incredibly less than those of us on Medicare.) Two bills that I have found: SB 908 which would also have Medicare set up a formulary, and SB 833 which would require the negotiation of drug prices. When Part D was put into law, none of these life saving drugs were even in the picture. I have a friend who has a different and rare condition who pays $19,500 each year. This person is not sitting around waiting to die, but is a vital, active part of the community. And, they aren't "wealthy" but don't qualify for assistance. There was a bill that was introduced in Feb. 2020 that would have put a cap on out of pocket Part D at $3200 annually. The pandemic hit and nothing happened. I do get upset about all this, because we may not qualify for assistance, but we are not rich! And no matter -- the problem needs to be fixed at the core. It's NOT ok for people who have worked all their lives and find themselves with an unwanted disease as they retire have to bear this burden. Can politics be put aside, and regardless of which side of the aisle the bill comes from, can we learn about it and support it? This isn't about generic drugs for seniors. This is about ibrutinib, acalabrutinib and venetoclax - staples of our treatment for CLL.

I have to point out. all the drugs we are talking about are classed as 'orphan drugs'. Normal drug rules do not apply to them. If these companies could not charge high prices and make profits based on relatively few customers-the drugs would not exist.

mk2045
mk2045 in reply to Smith123456

That does not explain that the profits also support the obscene high salaries of CEOs and pharm reps. That does not explain why private insurance companies can negotiate the price so that people on private insurance through their employer may pay a pittance compared to seniors. (Seniors money alone is supporting this? Doubtful.) That does not factor in that the federal government and researching institutions, as well as private foundations also contribute to the pharmaceutical companies efforts at research.

Smith123456
Smith123456 in reply to mk2045

what big company do the executives NOT get big salaries. Drug companies are not allowed to give co-pay cards to medicare patients by law.

AstraZeneca has an online online that pays for the first month of Acalabrutinib. No income limits. That helps.

azmedcoupons.com/content/da...

Sorry, I meant online coupon. We used it a few weeks ago.

Smith123456
Smith123456 in reply to bajajack

i looked at the fine print. Astrazeneca says NO insurance can be involved-so in effect it's a free sample. nothing wrong with that-howver whmk is correct. the first medicare filling would still be high.

Thanks. But if I use the coupon for the first month, I would still have to pay high for the second and third months until I get past the Medicare donut hole right?

bajajack
bajajack in reply to whmk

Correct. Our 2nd month was about $2900 U.S. I believe that represents the deductible and donut hole. The rest of 2021 is about $700/month. Deductible and donut hole start over in 2022.

Corkyrissa
Corkyrissa in reply to whmk

With the first purchase of imbruvica you go into catastrophic stage of your part d plan and all meds are cheaper. I bought Symbicort inhalers that are about $50.00 for each one costs me 58.00 for 3

Just as an addition to what others have said, I will note that my price for Imbruvica (Medicare D not an advantage plan) has actually gone down this year a small amount after 4 increases in 2020 and large increases annually in all previous years. My copay after I get to catastrophic stage is now $ 759 a month, down from something like $785.

David

on 12/23/2020 i bought an imbruvica rx my co-pay was 636.00 dollars.

Wow, they voluntarily dropped the price! The bigger problem is nobody knows how they generate the price (Ouiji board?) and Medicare cannot negotiate it.

Smith123456
Smith123456 in reply to whmk

actually daves plan might be picking up more of the 5 percent copay in the catastrophe part. My medicare advantage drug part-it is separate- cannot charge me more than the 5 percent but can pay more of it. there is a 5-8 percentage spread on that 5 percent

Hi. Call the Pan Foundation. 1-866-316-7263 or the Leukemia & Lymphoma Society( LLS) 1-877-557-2672. Good luck Hope this info helps you. LLS and Pan gives u a grant and like someone else said the first script for the year is about $3,000 and then $ 700.00 a month which Pan pays directly to the pharmacy. God Bless 🙏🏻❤️

Johnson & Johnson has a financial assistance program. I find that my Medicare cost is about 11k/year out of pocket so I am on wifes insurance

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