The Other Side of CAR T-Cell Therapy: Cytokine Release Syndrome, Neurologic Toxicity, and Financial Burden

[Jm954]

Details about CAR-T procedure and side effects.

CAR (T cells and natural killer cells) constitutes a powerful new class of therapeutic agents to treat patients with hematologic malignancies. Several CAR T-cell trials have shown impressive remission rates in patients with relapsed/refractory hematologic cancers. Although the clinical responses of these agents in hematologic malignancies have been very encouraging, they have also produced substantial morbidity and occasionally mortality resulting from toxicity.

ascopubs.org/doi/full/10.12...

Jackie

[Justasheet1]

All you have to point to is Dr Koffman’s Car-T blog to understand how difficult the process is. This is from a guy that endured a transplant. cllsociety.org/car-t-blog/

Let’s not forget poor Lisa Minkove. A CLL Hero who lost her own battle down the hall from Dr Koffman in the same Car-T clinical trial. drlaverne.blogspot.com/2018...

There’s no easy path with this treatment as of yet.

Jeff

[Jm954 Administrator in reply to Justasheet1]

Very true Jeff, it's a bit of a leap into the unknown at the moment which is why I thought this warts and all article might be informative.

Jackie

[Justasheet1 in reply to Jm954]

Jackie,

It definitely tempers all the hoopla. I think we’ll get there. Thanks to all the trial participants.

Jeff

[DLD1958 in reply to Justasheet1]

Let us not forget that every person and their disease is different. I have just passed my 30 day post CAR-T infusion and had no negative side effects, outside of a headache and low blood pressure. My disease burden was much lower than Dr. Koffman or Lisa Minkove. Prior treatments also influence how we react. I do not yet have the results of the 30 day follow-up tests, but am hopeful my new T-cells are hard at work.

[Justasheet1 in reply to DLD1958]

DLD,

I’m a huge fan of yours now. Could you please create a post with your experience?

Jeff

[LovecuresCLL in reply to Justasheet1]

Sounds like experimentation to me. But I guess when there is no other alternative.....Bless all those who came before us. I wonder why I was chosen to a see what’s going on with this first hand. And to get this disease to be a witness to the suffering. And to suffer myself. I wonder what I am being asked to do besides suffer along side all of you. Redemption lies in suffering my heritage tells me.

[Sushibruno]

Very scary stuff indeed!

[Jonquiljo]

You’d think that the CAR-T providers would eat some of the costs to get the downside risk of CAR-T reduced, if possible. When you think of it, the cost is about the same as 2-3 years of Ibrutinib. So it CAN be cost effective.

[Wpooh]

Thanks for this. I was struck by this paragraph:

" Even though CAR T-cell therapy is a covered indication by the Centers for Medicare and Medicaid Services, this does not mean the reimbursement covers the costs a hospital providing the therapy incurs. On October 1, 2018, the 2019 Inpatient Prospective Payment System rule went into effect, giving CAR T-cell therapy a diagnosis-related group with higher payment, MS-DRG 16, and the ability to receive additional reimbursement for the CAR T-cell product through a New Technology Add on Payment (NTAP). To capture the full amount of the NTAP ($186,500), the CAR T-cell product charge must be set high enough that when it is reduced by the facility’s cost-to-charge ratio, the NTAP can be recovered.18 Hospitals also have the ability to receive an outlier payment if the charges are high enough to hit the threshold."

I am getting acquainted with CLL terminology, but there is a whole other area that is also important for my well-being!

[Smakwater]

Whoaa!

That read took the vacation out of the CBS network documentary, "It just took 20 minutes and they're like, alright, that's it,". cbsnews.com/news/car-t-cell...

The news media makes CAR-T sound like a tea party that cures cancer.

Although CAR T shows much promise, it going to take allot more work to put the romance back in the relationship.

Very in depth and informative Jackie,

JM

[lexie in reply to Smakwater]

The coverage in science publications and I do not mean research and peer reviewed publications but stuff for general public consumption like scientific american and science news have the same slant as you have described. I get CAR-T articles forwarded to me by well intentioned friends.

[Smakwater in reply to lexie]

I know.

They all mean well, but, as the saying goes:

"If it's to good to be True, Then it's to.....

[Jonquiljo in reply to Smakwater]

If the Fed. Govt. put a few more $ into covering this treatment, it has a LOT of potential. The biggest problem when funding CAR-T is that it is labor intensive. Thats a lot harder to do large amounts of testing than with a pharmaceutical. It puts the financial burden on the hospitals more than anyone else - which isn't incentive for them to try harder.

I also thought I read somewhere that CAR-T isn’t reimbursable if the patient doesn’t make it. That puts hospitals into a spin-the-wheel kind of situation. But, as I said earlier, if CAR-T costs about 2-3 years of Ibrutinib, then clearly it has financial feasibility. If only the CMS can figure out ways of clinically testing it in larger numbers.

[Smakwater]

There are definitely many reasons to support the funding of of CAR T research.