CAR-T treatment for CLL

[pbaddi]

Hi all,

I hear that there is another treatment option available called CAR-T. Any views on this?

Thanks in advance.

[lankisterguy Volunteer]

Hi pbaddi,

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CAR-T has been used in trials for CLL since 2010. It has been approved for a few other blood cancers like ALL where it is very useful. But other than the first 3 patients at Penn Medicine in Philadelphia

pennmedicine.org/news/news-...

the success rate has been disappointing in CLL.

There are many trials and new approaches being studied to make it more effective in CLL, but the underlying issues are complex.

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Here are some useful write ups: webmd.com/cancer/lymphoma/f...

susupport.com/success-rate-...

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The CLL Society has many articles about CAR-T here: cllsociety.org/?s=CAR-T

and Dr. Brian Koffman bkoffman - the founder of CLL Society is one of the successes in full remission after his CAR-T treatment several years ago see his blog here: cllsociety.org/car-t-blog/

Also look on this page for the box labeled "Related Posts"

Many of Dr. Koffman's past postings on his CAR-T experience are listed there- just click to read more.

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Len

[pbaddi in reply to lankisterguy]

Thx for detail info

[MovingForward4423]

I read about CAR-T and it’s seems like a mixed bag for CLL. Some go on to be cured (well long remission) and others don’t get that good results. I know there are some trials on going right now. I’m not sure on the eligibility of those trials. Love to hear from anyone who has been following the treatments research for CLL.

[pbaddi in reply to MovingForward4423]

Thx for the info

[LeoPa]

The cost is prohibitive. It's like one and a half million or something like that. I'd be twice dead before my insurance company approves it. No one's life is worth that much in this part of the world unless he can pay it out of pocket which I can't 😞

[pbaddi in reply to LeoPa]

Thank you

[MovingForward4423 in reply to LeoPa]

Well if you add up the long term care for CLL CAR T can be good value. I read it cost about 250k, not 1.5M… So Ibrutinib costs 50k per year list price, so do the numbers. CAR T, if it was consistent would be a good deal for insurance and health care providers.

[pbaddi in reply to MovingForward4423]

Thx

[LeoPa in reply to MovingForward4423]

Something is wrong with your numbers. Ibrutinib does not cost 50k a year. And where did you get the $250 K for CAR-T? If it was that cheap every insurance company would prefer it to the "brutinibs"

[mrsjsmith in reply to LeoPa]

MovingForward is in the U.K. and the exact figures for Ibrutinib are secret but as I understand probably closer to 60k and I can’t comment on the other treatment.

Colette

[MovingForward4423 in reply to mrsjsmith]

Actually they not secret. I see the charges to BUPA each month. It’s 50k GBP a year in the UK. NHS will have big discounts that will not be disclosed.

[mrsjsmith in reply to MovingForward4423]

Interesting that BUPA is that low and I wonder if the NHS is much less. I doubt us mere mortals will ever know.

Colette

[MovingForward4423 in reply to LeoPa]

LeoPa I see the bills for my treatment. Ibrutinib is 50k GBP per year. If you are in the US you need to convert to USD and remember each healthcare provider may have different negotiated discounts.

Car T is not 1.5M USD per treatment. In fact some of the most expensive gene therapy treatments come in at 1.5M.

The cost of CAR T-cell therapy is one of the biggest challenges, with financial implications for patients, payers, and providers. Drug acquisition is the largest component of the cost of CAR T-cell therapy, with list prices ranging from $373,000 to $475,000 depending on the specific drug and indication.

So my number of 250K GBP was correct.

[LeoPa in reply to MovingForward4423]

OK, thanks, I wasn't aware it was GBP you meant.

[beanlake14]

My friend died after receiving this treatment BUT so many treatments didn’t work for her, that this was sort of a last ditch effort. I wish you didn’t have to be so bad before you get it. She was just worn out.

[MovingForward4423 in reply to beanlake14]

It is annoying that potential curative treatment always seem to be the last resort after you have exhausted everything else that has a incremental detrimental effect on your health and well-being.

[HopeME in reply to MovingForward4423]

The word “potential” must be emphasized in your statement to understand why Car-T isn’t a first line treatment. While Car-T has the potential to cure it is not only expensive but it is difficult on the patient and the probability of success is perhaps 50%. Most patients wouldn’t start with Car-T if given the option, especially since we know 1/3 of CLL patients will never need treatment.

Best,

Mark

[MovingForward4423 in reply to HopeME]

Correct probability of success is the key word there. What would be nice is if we could see CAR T progress to a standard treatment to allow for curative approaches to become the norm, not the exception. They are expensive, but years of inhibitors can also add up quickly.

[pbaddi in reply to beanlake14]

sorry to hear this