I live in the US, and my understanding is that Ibrutinib is increasingly the preferred first-line treatment for CLL in the US. But with so much research in other countries, I’m curious to know the preferred first-line treatment in your country.
Thanks!
Only one I can remember is Peru. A man who was 17p- received a box of
Ibrutinib almost immediately upon getting that mutation of CLL. Moffitt
has at least 2 CLL docs from Peru. Perhaps that is why.
We live in the US,
Linda
That’s a tricky question in a way because “preferred” can mean different things to different people.
I would say for the most part, in countries where ibrutinib is not available frontline, FCR is the standard front line treatment. But that may not translate to the “preferred” treatment in that some specialists and patients in those countries might well prefer ibrutinib front line, but it’s just not available for one reason or the other.
My amateur take on that is that Ibrutinib not being available front line in some countries is more a function of the prohibitive expense burden Ibrutinib can put on national health programs than Cll specialists in those countries not accepting the data that shows that Ibrutinib outperforms FCR for just about everyone but the subset of Cll-ers that are under 65 and have mutated IGHV.
I imagine in some countries their regulatory agencies, like the fda in the US, are still publicly questioning whether the data on ibrutinib as a front line treatment are mature enough but that expense is more the issue.
And I get that. Public health systems have to make tough decisions and can’t make every 140k a year treatment available for everyone without jeopardizing their budget, and thereby perhaps having to cut back in other areas.
Cll is hardly the only illness that has outrageously expensive drugs to treat people. Deciding which expensive and potentially life savings drugs will be allowed on a countries national health formulary must be a really tough decision for those charged with making such decisions.
140k is only a USA price. Other countries have a lower price. nice.org.uk/news/article/ni...
Interesting! Hopefully the price of this drug will come down soon. Am I right in thinking that Ibrutinib is only available in the UK to folks who have had treatment before, or who have a 17p deletion or TP53 mutation?
Interesting subject ,,,,,,, It is surprising when you/we hear prices of drugs in other countries .
That is interesting , here are a couple thoughts.
First of all, regardless of whether the price of ibrutinib is 50k or 140k, the point remains the same. People in the UK are probably not getting ibrutinib front line not because the NIH thinks its not the best front line therapy, but rather making an economic decision that the cost of the drug is too high. I understand that, unfortunately price is an issue and I am sure the NIH has to make a great number of tough calls on expensive treatments that could break the system.
The other thought I have is that whether the drug costs an individual 140k or 50k, probably doesn't mean much by comparison. I suspect very few people are paying the full sticker price.
I pay about 10k a year for mine. I have no idea how much medicare pays for me, I suspect its a very steep discount from the 140k sticker price.
What I would want to know would be how much does medicare pay J&J for ibrutinib vs how much NIH pays. That's the important number, the number J&J actually gets.
Then the next question is how can J&J justify charging medicare more than NIH, if that's whats really happening. It might be those numbers are close, despite the large gap in the sticker price for individuals.
Its a cat and mouse game that plays out every day. J&J has leverage, they have the life saving drug. Medicare and NIH have leverage, that's where J&J will get most of their money and the value of a life saving drug not covered by medicare is very diminished.
In Pakistan FCR, BR and ibrutnib is available. FCR is only given to people who will get a long remission depending upon prognostic factors. BR is the standard first line of therapy due to limited and reduced risk of infection. Pakistan has a very high percentage of infectious diseases and TB is very prevalent. Due to this FCR is not given until a patient is admitted to isolation ward.
Ibrutnib is not given because its damn expensive. Available for 17p deletion patients.
In Canada it depends on which province you live in. In BC you can get ibrutinib if you’re over 65, medically frail, or 17p-. Otherwise, if you’re mutated you get FCR frontline; BR if unmutated.
Heather 🇨🇦
That's pretty much the same in Ontario. If I were to require treatment tomorrow, I would get FCR based on the fact that I'm 39 years old, in decent health and 13q mutated.
But according to my oncologist, the government (which currently funds fcr but won't fund a daily oral medication) can only ignore the research and data for so long before they have to fund it. So eventually, it will be funded here, just a matter of time.
Carol 🇨🇦
I agree Carol. I imagine the next update will reflect the research more closely.
I really hope you are right Carol. We are in Ontario as well, and thankfully my husband (TP 53 and unmutated) has a good drug plan that is mostly paying for his Ibrutinib, with the Trillium program paying the shortfall. He would like to have the option of retiring earlier than 65 if he needed to, but at this time that is not an option as he needs his drug plan. So many people we have talked to here are shocked to hear that the approved cancer treatment he needs is not covered by our government universal plan because it is a oral pill! It is however covered through our government plan if you are over 65.
I live in India, aged 73 yrs, male,
Dx CLL in Feb 2013.
No del 17p, no bad markers of ZAP70 and CD 38.
Ighv mutated. Trisomye 12.
I took the treatment of B & R IN DEC 2018and completed 6 cycles.
My counts are normal, lymph nodes normal spleen and lever normal , now
That’s great to hear. Thanks for sharing.
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