CLL Support Association
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How are people dealing with the cost of ibruvica?

cost of drugs

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Mine was approved by my Blue Shield PPO plan which costs me $817/mo, but then I got into a clinical trial at UCSD where it will be provided at no cost for 3 years. Can't imagine what I would do otherwise. I would recommend anyone put on ibrutinib ask their doctor about clinical trials.

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May I ask about your clinical trials, I live in Escondido. How intensive are the trials, how often is your trip drive to UCSD/

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Hi Tvettes5 - I believe UCSD has a few different trials. I was Stage II and unmutated with no prior treatment so I happened to qualify for one of their trials under Drs. Thomas Kipps and Michael Choi. It's a "phase-2 trial", so lucky for me they've already worked out the kinks with the phase-1 guinea pigs. It consists of 9 infusions over six months of obinutuzumab (Gazyva) - weekly for the first month then monthly for 5 months accompanied by 420 mgs of ibrutinib taken orally daily for 3 years. Then they'll re-evaluate with the possibility that I'll take the ibrutinib for the rest of my life (or until they develop something better). The infusions can take 6-8 hours and I have to travel to La Jolla the night before each treatment. (The American Cancer Society provides hotel rooms at steep discount for anyone traveling for cancer treatment.) Everybody responds differently - some people have violent reactions to the infusion and it has to be stopped or slowed down. I've had no reaction at all during the infusions, but after the first two weekly infusions I had a strong delayed reaction 24 hours later like the worst flu and hangover you've ever had - combined! I was completely incapacitated and bedridden for 36 hours, but then it lifted and I'd feel fine till the next one. This meant the treatment was working so I welcomed it. I haven't experienced that again since the second infusion and my numbers are moving in the right direction and I feel great. Many of my bothersome symptoms like lymph-node neck pain (causing headache, dizziness, and blurred vision) and flank pain from my enlarged spleen are reduced and the debilitating daily fatigue I had prior to treatment is GONE. (I still get "tired" but that's very different from real CLL fatigue.) And after suddenly dropping 25 lbs just before diagnosis, I've regained 10 lbs and stablized. Ask your doctor for a referral to UCSD and see if there's a trial for you. And if not, there are lots of different trials all over the country.

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Thank you for your reply and detailed information, wow a lot of info to unpack. Yes I will contact my oncologist, and have complete faith in him, been with him 20 yrs. Been on Imbrucvia now going on three month, but shutter at the expense coming off Aug2018l, thanks again.

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Hello aberk,

Can you provide some context to your extremely brief posting?

What country & health system (insurance) are you using? Are you currently seeing a CLL expert doctor? Are you in treatment or how soon does your doctor believe you will start.

BTW- your posting is unlocked. I suggest you edit the original posting and change the answer to " Who can see my post?" restrict it to "Only followers in my community"

Len

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I am in the US on Medicare.Third week on imbruvica. treated by cll Dr. Have received a grant fromPAN foundation for one year for the 20% I would have to pay. If the grant is not renewed I will be in serious financial difficulty. Thanks for your response.

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If you get to the end of the year and PAN is out of money and won't renew your grant- ask you doctor and the specialty pharmacy (Diplomat, ONCO360, Biologics or Avella) they have specialists that know where to find copay assistance.

If the specialty pharmacy does not help, then contact the LLS and ask them to assist you

. The Leukemia & Lymphoma Society

lls.org/

800-955-4572

Dedicated to funding blood cancer research, education and patient services. Offers a variety of services, including an Information Resource Call Center, limited financial assistance and co-payment assistance (depends if funding is available), support groups and a patient matching program.

Programs that Assist with Medication Co-pays

rxassist.org/patients/res-c...

I have been on the new targeted (very expensive) drugs (Idelalisib, Ibrutinib & Venetoclax) since 2012 and have not paid more than $500 in total copays over the 6 years. And if I had been more patient, determined and pursued all the resources it could have been $0 total.

Len

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With part D coverage, you should go into “catastrophic phase of coverage” after a certain dollar amount. Its a whole lot less than a 20% co-pay at that point. I think mine is 5%. It takes about 1 month at 20% with Imbruvica to get to catastrophic.

There are certain times of year that you can switch Part D to a better plan also. Depending on your state its minimal cost changes among Part D carriers.

Medicare is really hard to figure out with a million options. For sure some plans max out at a $9K co-pay - no more. But thats still a lot. I have heard of some states that will merge your Medicare with Medicaid if you face large out of pocket costs. I think they are northeast generally.

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Just found out that I covered the Gap -donut hole, and my co-pay decreased from $2700 to $600 and PAN is covering the whole amount for the next 10 months. FYI

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I kind of thought that would be the case. I looked online and all or most Part D plans cover it as “Tier 5” (non-preffered Brand) at some ridiculous amount. But, by the time you pay the first month - you are past the initial period (up to $3500) and past the donut hole ($3500-$5000). Everything after that point is $600-$700 a month. So my plan and most others pay for it at about $9500 for the whole year. Co-pay assistance groups can cover the “catastrophic” at $600-$700 per month far more easily than they can afford the $13,000 per month it would be retail.

I have been told that California makes insurers cover this drug (and others). Some other states do the same thing. I’m pretty sure if you went on dual agent therapy (when it gets approved) that the second drug is even more discounted as the catastrophic phase comes within the first month or so. So a second outrageously priced med will be just the catastropic price of a 5% co Pay. Even one drug covered this way is enough to break most people, but thanks California - its about time our state government did something that didn’t cost us more money!

I’m not eligible for assistance, but I could manage the $9500 a year. No way could I manage the $150K a year for an uninsured price, though. Now the more “novel” targeted meds cost a bundle and its getting everyone angry at the Pharma companies pricing them out of reach. It will bankrupt Medicare faster than it is going already. I do wonder, however, if the development of multiple drugs (like the upcoming acalabrutinib) will force competition among them? It can be done such that the pharma companies and insurance companies got a decent profit and didn’t rob the public blind. They whine about expensive development costs but that isn’t fully true.

Well,congrats on getting Ibrutinib covered!

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May I ask if you have Medicare part A & B? I getting about ready to start imbruvica .

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I too received grant from PAN for a year, expires Aug 2018, started my third week as well. $4000 with Medicare and Suppmental AARP so I co-pay $2700 UGH! I hear you! I have scanned the internet for HOURS to find, J&J rejected they want Gross Income, adjusted is more true reading of what I live on at 74 yrs old and fighting stupid cancer for 20 yrs.

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A friend of mine (USA) has Medicare and United Healthcare (AARP) PartD supplement. He says the yearly cost to him is around $9000. While that is more than most people (that I know of) can pay, its better than the $155,000 yearly retail.

The whole cost of these drugs is nuts. In the UK, does NHS cover it? If you are in the US, there is a cancer drug parity law pending, but you never know these days. Some states have their own parity laws - but they are weaker.

There are drug assistance programs in a lot of counties from lots of agencies, but the emergence of all the new oral cancer drugs (not just for CLL) are wiping them out.

Good luck, if you find help. It is there sometimes.

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Hi Jonquiljo, I am in the UK and being treated by the NHS. Just started first line treatment with Ibrutinib after 8 years on watch & wait. We have an independent body that assesses and decides what drugs can be prescribed by NHS clinicians and under what circumstances, the body is called NICE (National Institute for Health and Care Excellence). it is their job to weigh up the cost/benefit ratio for each potential drug. In the case of Ibrutinib NICE have mandated its use only under certain conditions which are broadly speaking for refractory/relapsed CLL and where the CLL is 17P/TP53 mutated, and therefore unsuitable for FCR treatment. In my case I became TP53 mutated in the last 6 months prior to treatment which enabled my Haematology team to use Ibrutinib for my treatment. As you may know the NHS does not charge patients for any medical treatment (although the car parking charges can be excessive) so there is no direct cost to me for this wonderful treatment. It goes without saying that the huge (and in my opinion unreasonable) cost of this and many more innovative cancer treatment drugs is placing an impossible burden on the current NHS funding, as it is in every other health care system around the world. I know that the question of health care provision in the US is a very contentious topic but for me when you are sick and in need of medical care the last thing you need is the additional worry of how you are going to pay for that care. The NHS that we have here in the UK provides just that and most citizens here would not swap it for anything.

I wish you well in your CLL journey.

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If I were running the show over there, I would say that Ibrutinib should be given to anyone with CLL regardless of mutational status or number of treatments. I presume that the NHS can negotiate prices with the pharma companies.

In the USA, Medicare is, by law, not allowed to negotiate prices for drugs (outpatient). It's really stupid, but then we do a lot of stupid things. Either way, we all end up paying for it in one way or another. Your taxes are higher than ours, I believe, so you pay for it there. We pay for lousy insurance and get ripped off. We're pretty lame when it comes to health care and it is controlled by big money and our government is now out of control and not for the (real) people anymore.

Most countries opt to find ways to make everyone pay in one form or another. What they don't do is regulate the people who charge us for all the care - though perhaps more in UK than anyone else. When it comes to cancer care or any life threatening illness, everyone should be equal. If we gave our legislators just one week in our bodies, they would be running for pharmaceutical coat reform.

I spent many years working in Biotech/Pharmaceutical industries. It was all about making a big score and taking as much as we could from the public. I couldn't stomach it and left the business about 10 years after I earned my Ph.D. It hasn't changed.

Good luck.

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The degree of access to Ibrutinib is regrettably a function of funding which is just a fact of life in the real world, but I do think treatment is moving in the direction of novel agents replacing the existing role of FCR. If it were not for the unjustifiably high cost of Ibrutinib (as with others too) then its use would undoubtedly be greater and wider. The NHS does negotiate the cost of drugs with the big Pharma, although many would argue not hard enough, and as a result the cost of Ibrutinib here is less than half of what it is in the US. Why US legislators allow the big Pharma to rip off US citizens the way they do is a complete scandal and I would not presume to suggest any reasons behind this but if I were to then vested interests would be high on my shortlist. Whenever insurance gets involved it always pushes up cost because there is no incentive to reduce costs due to it introducing a disconnect between those providing the service/product and those paying for it, not to mention the profit being extracted by the insurance company. it could be described as 21st century feudalism.

I agree that we all end up paying for it one way or another, after all nothing in life is actually free. But I cant help wondering when you have multiple organisations in the chain that delivers health care and they are all looking to make big profits from any individual treatment then it must be inevitable that there will be a very large cost overhead to that treatment. I read recently that the admin cost of healthcare in the US represented an eyewatering 35% of total costs, with many other national systems not that far behind. To my mind this extra cost adds nothing to patient care, but the burden of paying this is borne ultimately by the patient.

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I would voto for you!

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This is the reason single payer national insurance in USA will not work. 21,000 CLL per year times $155,000.00 is $3.25 billion dollars per year just for new CLL patients.

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21,000 arebestimated number of cases. Probably half of them cant even get insurance - Part D too. I’m not sure if Medicaid pays forvanyhing beyond watch and wait.

This country is so lame - we want to spend $25B on a “wall”, but cant force pharma companies to lower prices by regulating them.

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I have to take exception to the notion that the US is “lame”. Please tell me, which country made it possible for every CLL sufferer globally, to have a treatment like Ibrutinib? In which country did the research for this miracle drug occur. Where is Celera located? The UK? Russia? France?

Nope.

I’m sorry but complaining about access to a drug that NO ONE in the world would have in the first place without the efforts of US pharma companies is simply not right.

The issue with US pharma is not that drugs aren’t being developed but that the process for approval is long and expensive plus there is simply not enough global competition. ALL countries have some degree of socialized medicine, including the US. There is no truly free market because the health care insurance and drug industries are so heavily regulated everywhere.

The combo of heavy regulation and no true free market contributes heavily to the high costs of drugs.

But at the end of the day, we do have many CLL treatment options precisely because of US-based research. Germany and a few other countries have some research going but the action is still here.

As an aside, whether money is spent on a border wall or not, is neither here nor there. Spending on border security is not preventing companies from doing drug research.

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In Canada ibrutinib wasn't available at all for unmutated CLL till recently and my husband had to pay a lot of money from our pocket to go to the U.S. to get it.

United States is the best country in the world to live in if you have CLL.

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Venetoclax was developed in Australia, Zanubrutinib, a new version on Imbruvica (ibrutinib) is Chinese and Tirabrutinib is Japanese, Bendamustine is East German...

While it maybe that these drugs are or will be marketed by US companies most are simply licensed.

Then there is Shingrix from the UK GSK, off the shelf CAR T from Cellectis in France, Reditux, from Dr. Reddy in India, about to enter the U.S. market, and so on...

Drug development and manufacturing is global... Imbruvica (ibrutinib) made in China... Zydelig (idelalisib) is made in Canada.

In 2012 at a conference a number of us were at, Dr. Keating said 'Germany is kicking our butts in CLL Research' ... probably still true.

Europeans do pure research, U.S. tends towards drug development and marketing.

Without the Orphan Drug Act of 1983, CLL patients would have no new drugs... similar incentives are in place in the EU and other countries.

~chris

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Ibrutinib is the breakthrough drug pioneered in the US. Others coming down the pike are built on this immunotherapy research.

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True ibrutinib was a tool Celera was using to study BTK. The newer drugs like acalabrutinib due to be approved this year should eclipse Imbruvica (ibrutinib). lower dose far better targeted... yes it too was developed in the U.S. by the CAL- 101 researchers, not that it matters frankly...

~chris

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Its not just about imbruvica. The fact is that even Medicare and Medicaid are not allowed by law to negotiate drug prices. That means that the initial costs cannot be lowered as much if insured by those programs. There are cancer drugs with list prices of well over $500,000 a year. Pharma companies here can charge whatever they want.

The UK is a smaller market, but still negotiates drug prices. When it comes to under 65, we have very little regulation of the health care industry. We only regulate insurers, which are a small part of the picture. Under Obamacare, there were so many coverage requirements for insurers that insurance prices went up. You only get a break if you are of modest means. So people buy inexpensive policies with enormous co-pays and deductibles and then they cant afford to go to a Dr when they get sick. Many don’t.

Now, under our new goverment, even obamacare has been weakened. At 64 I was paying $5500 a month for insurance. Thats over $60,000 a year. Sorry, but all the moneyed interests lobby the system to get what they want. When I was in biotech/pharmaceutical companies - our goal was to make the largest profit available. We dumped projects if they had no astronomical price tag. We were lame, and that was long before Obamacare when insurance was reasonable. Now is far worse.

Sorry, I dont see this country as less than lame when most people get shut out of many new cancer treatments because of cost. Also, not all of this research is US based. It occurs worldwide. Some are US companies, some are multi-national. The US companies just got a 14% reduction in their top tax rates. So what do they do? They raise prices. Sorry but this is unacceptable for me. Its even worsebwhen they are selling products whose initial research was developed using federal funds at universities. We did this a lot. The university reseach labs got a few million for potential products that we could make billions from. These pharma companies so some of their own research, but often buy the rest from public sources.

The recent $90,000 cure for hepatitis C was developed at a VA lab that was federally funded. They get something that is of use, pharma comes in and licenses it for a fraction of what it is worth, and then pharma sells it for more than people can pay. Sorry, thats “lame” in my book.

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I am in the US and have Medicare and Kaiser. My copay is $20 per month.

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What state are you? I’m in MD.

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I am in California.

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Doesn’t Kaiser force you to stay within Kaiser system? Like you can’t go to Stanford or UCzlA, etc ?

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Kaiser does not cover anything outside the Kaiser system unless it is a life threatening emergency or unless they refer you. Or if you are traveling within the US. But no, they won’t cover Stanford or UCLA. You can pick your own doctor within the system. I am fortunate my doctor has had lots of experience with CLL patients.

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So lucky to be in U.K. lots of people moan about the NHS but honestly don’t know where we’d be without them

June

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I am in the U.S., 61 years old, have group insurance through my employer. My pharmacy found a program for me that makes my co-pay $10 a month for Imbruvica. I've been on it for 2 1/2 years. I have 17P/TP53 mutation.

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Which state do you live ? Can you find out the program name? I’m in MD.

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Diplomat pharmacy found the program for me - if you go to imbruvica.com/cll/what-is-c...

and then go to the Affordability Support Options, it will tell you that if you have commercial insurance you pay $10 per month for Imbruvica

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What is the program name please. My co-pay assistance ends Aug 2018, then pay $2700 a monrh, thanks.

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What type of group insurance? I have united Heath Care where I work?

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I currently have Humana, and prior to that I had Aetna. I suggest you have your Pharmacy check, or call the number on Imbruvica's website. My pharmacy is Diplomat, and they are the ones that found the program for me. Your United Health Care plan should qualify.

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Thank you, I am on the watch and wait as for now. But being single and the only income. I have concerns about the time when treatment time comes

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I am in CA, have had CLL for 18 yrs, 74 yrs old, have Medical and AARP supp. Health net, $4000 a month for Imbruvica, my copay is $2700, I got Leukemia Soc and PAN, assistance, but ends Aug 2018, then I pay. Can't find any group or foundation to assist. Most don't cover or are closed now.!

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Diplomat pharmacy found the program for me - if you go to imbruvica.com/cll/what-is-c...

and then go to the Affordability Support Options, it will tell you that if you have commercial insurance you pay $10 per month for Imbruvica

. Not sure of any programs for non commercial insurance.

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Thank you for your timely reply,; Yes already checked out that site, not eligible. Oh well, thank you.

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I am in Ca too. Medicare with the best AARP part D - “preffered at $98/mo). Supposedly its high co-py until I get to catasrophicband them it is $700-$800ma month. Catastrophic is after about $5k. Ca pay. I know someone with same coverage and its $9000 a year. It seems like u pay more with assistance.

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How can I find out if I qualify for castrophrotic (sp)? Yes I have friend in CA with Blue Cross only pays $60 a month for the same drug. I am SOL until I find some fund or foundation, so far no luck.

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I am in California (SF Bay area) and have AARP Medicare Rx Preferred at about $95 a month. It is underwriiten by United Health care. You wrote HealthNet, but I dont think AARP currently writes plans with Heath net for part D.

Anyway, I cant get my calculator working, but I know of someone in San Francisco, who has the same plans, and he says his costs are ~$9000 a year for Imbruvica.

Everyone qualifies for catastropic. Its just a silly name they give for the coverage when you get out of the donut hole (about $5000 out of pocket). In my plan, they cap the cost of Tier 5 medicines at 5% of retail after you get out of the donut hole (catastrophic). My plan is one month old - so they still offer them.

If you need to switch, you can enroll in a new plan in the fall open enrollment period for part D. That is Oct 15 to Dec 7. I’d call AARP/United health care - or call a broker.

Unless you are on an old part D plan that is grandfathered - I think something is wrong. Thats all I can figure out. If you change in the open enrollment period, at least you can get covered by Oct 15. Beyond that, I don’t know how switching plans works. I just turned 65 in may.

Good luck and I might be able to help if you have questions.

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Thanks, Jonquiljo, AARP is Heathnet under Plan D, that's why it is $4,000 not the 11K or 12K, and co-pay is $2700. I am not close to closing the donut hole but will be in a couple of month, I think. I have someone I can call with Healthnet to assist, so will be talking to him. Thanks again for you detailed info.

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I think the newer AARP plans are from United Healthcare. If you call AARP - you can switch to one. They may have been from HealthNet a while back - but not now. I think all AARP plans are the same in California. It's a BIG state, but I am in SF Bay area and new AARP supplements and Part D are ONLY United Healthcare. I assume you are "traditional Medicare" - parts A and B, etc.

The reason I know is that I was so confused about what was the best coverage (with CLL, you need good coverage), that I hired a consultant (not a broker) to enroll me in the best plans and take care of all the arrangements. You are already enrolled, so I think that, if you wanted to change to a better (or different) part D plan - it can be done sometime Oct 15-Dec 7. Calling HealthNet is only going to result in Health Net trying to see you other HealthNet insurance or plans.

I ran Imbruvica 560mg under the current AARP Rx Preferred and it was $9922.38 for total ANNUAL out of pocket costs. While that amount is crazy in itself - it is a whole lot better than you will be paying if you paid $2700 a month co-pay. That's $32,400 out of pocket PLUS the cost of insurance.

I am not sure where in California you are, but I can run the calculator for any zip code. If you send me a message I can do so, and would be glad to help. You mention $4000 for Imbruvica. I think it retails for about $13,000 a month. (GoodRx places it there). That would be the cash price at most pharmacies (that can order it). One of the reasons I get concerned is that I am still watch and wait. If I only wait 5 years, the cost of front-line treatment could retail at $50,000 a month. The whole health care system is blowing up as new cancer drugs with astronomical prices are developed. All of the assistance agencies are tapped out!

Now I am fortunate to be able to swallow $9K a year, but not $50K a year - not for long. I don't see that changing for the better anytime soon. So the big prognostic indicator for CLL could be the ability for anyone to afford treatment. That would be the "Broke1" mutation. You don't even need FISH to find it! I really wish I was joking here. Being an ex-scientist I read lots of CLL journal articles. I never see this phenomenon mentioned. The manufacturer tried to raise the cost of Imbruvica quite a bit this past spring. Only from public pressure did they back down. We all got lucky - for now!

But if you can get a good Part D plan and price - go for it. They may "grandfather" price changes in some Part D plans. Seriously! We can wish, can't we? Good luck.

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Jonquiljo: thanks again for your detailed reply. My Zip is 92027. I have an AARP HealthNET fellow - held a forum at a local restaurant this last fall for signups and I kept his number.....will give him a call and talk about the donut and any changes to the Part D to Mecicare, thanks to your imput. As I recall you said once the Donut is covered, the $5000 co-pay, then things should change for me $ wise?

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Hopefully. I know 94027 as I lived down there for many years.

I cant figure out how AARP sells partD through HealthNet. The donut hole should end at $5000 in 2018. But thats for standalone part D policies. That means it ends when the sum of co-pays exceeds $5000. You should be out of the donut hole after 2 months.

Are you perhaps on a Medicare Advantage plan? That may be a cause for confusion. I am talking about standalone part D plans. Those are all through United Healthcare.

Yes, in the traditional medicare plans that are directly through CMS and supplemented privately - you would likely have a “Supplemental policy” and a part D policy. Supplemental poolicies pay for co-pays and deductibles in medical care. Part D pays for drugs only. Medicare advantage combines everything and provides all heath care as a private insurance for one premium. The only problem with Medicare Advantage policies is that they are all different and all have separate rules. Some limit providers, some limit services, some do not.

I think that stanalone Part D plans all have the same rule that when you get out of the donut hole - you get a much reduced rate for all medicines (the Brits reading this must think we are nuts). I am not sure how Medicare Advantage does it.

Good luck, and please let me know what you find out if you can. If you must pay 2700 a month regardless - then you could switch to “traditional Medicare” . Therebare specific times of the year, etc to do it - but it can be done. Its more complicated to do than MedicarebAdvantage, but it does give you a lot more flexibility in all aspects of insured coverage. I don’t know how it handles drugs. I would expect all part D rules are the same, but Medicare is way over my comprehension at times. A traditional Medicare would cost a bit more, but if you are stuck paying $2700 a month for Ibritinib, it might be worth switching. Good luck in any case.

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Supposedly Calif. has/is passing a cancer drug parity law. But at even $9k a year that is not parity.

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I am in france anybody must be covered by social security systeme. Ibrutinib is free of charge for the patient. The cost for social security is 5 873,01 €

for the 90 pils box (140mg)

legifrance.gouv.fr/affichTe...

regards

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