The Other Side of CAR T-Cell Therapy: Cytokine... - CLL Support

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

Jm954 profile image
Jm954Administrator
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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

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Jm954
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Justasheet1 profile image
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 profile image
Jm954Administrator 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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
Sushibruno

Very scary stuff indeed!

Jonquiljo profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
Smakwater

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

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