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.
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.
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.
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.
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.
" 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!
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.
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.
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.
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CAR T-cell therapy
CLL Society Webinar Nov. 17th Dr. Joe Fraietta "The Future of CAR-T Therapy: Can CAR-T CURE CLL?" Some CAR-T patients are 10 years CLL-free!
Treatment Tradeoffs. Very good Video. Debate: Is it appropriate to treat patients with CLL earlier in the era of novel agents? Dr. Furman 
