Frequently Asked Questions

Depending on the autoimmune disease you have, you can try looking up on clinicaltrials.com and see if you qualify to join any trial. New trials are started almost weekly because so much recent hype, so you might get surprised and something shows up.  

the list of autoimmune diseases...

CAR-T is absolutely the most talked about treatment with genetically modified T-cells. However, the CAR (chimeric antigen oreceptor) can be used to reprogram other cells in the body, for example NK cells, to kill also their target (in autoimmune illnesses most often B-cell lineage). While the efficacy of DNA based CAR-T is proven, the safety is a concern and this opens a door for other potential treatments like mRNA CAR-rT or CAR-NK cells. The authors of this page are interested in reaching optimal treatments. 

There are both. China is very big and there are scam treatments, and there are legit ones. It was very hard to figure who is who, and it's an ongoing process. We already had identified some scammers, or at least, to say non-professionals in the field who offered very bad CAR products. And some patients were scammed in the process, exposing them to unneccessary chemotherapy and cost, without providing real CAR-T product. 

 Contact us for more details, as we don't want more people scammed and even potentially harmed. 

We are not aware of options for CAR treatments for autoimmune patients (outside a clinical trial, self-pay)  anywhere outside China. Let us know if you find anything yourself.

Obviously, the question is too complex and individual and best addressed to your doctor. If you, like me, don't really have a doctor/specialist knowledgable about your disease, you can try to reach out to the experts in the field, and patients organizations via FB, Twitter or other social media. 

If it was me and I am rapidly getting worse with the possible irreversible damage to organs, CNS, PNS etc, the decision would be easy, but otherwise, I am waiting too :) 

As a female, I wouldn't do aHSCT lightly, and I refused to do it, especially because I have B-cells mediated disease (Sjogren's and SLE, with Sjogrens and neuropathy being dominant symptoms)  and the success of AHSCT is really low for Sjogrens especially, or most LLPC mediated autoimmune diseases.. and the AHSCT is very toxic, to female reproductive organs (which almost certainly brings early menopause according to a massive drop in AMH levels, a hormone that is a very good measure of ovarian egg reserve / "age"). 

However, for some diseases like MS, for now the success of AHSCT is more known than with CAR-T so I understand decisions to do it, if you're really afraid of permanent damage with waiting.

Also, you should be aware that if you join some trials now, which might be end up to be unsuccessful for your disease (for example CD19 only for disease other than SLE), you might not qualify for any CAR-T related trials in the future, as most of them exclude patients who already had CAR-T treatment. 

From our knowledge, Mexico has only recently started doing (imported) CAR-T treatment for cancer. They dont make their own CAR-T products, and have not much experience in the field even for cancer. So, no, for now we have not found a valid option in Mexico (or anywhere else besides China).

Some websites look suspicious claiming to offer CAR-T, but they are not what you'd be looking for.

From what current published research states and informal data we gathered, CD19 might not be enough for all B-cell mediated illness. This is the reason some companies are investing into BCMA trials, that target also Plasma cells (a B-cell lineage that produce autoantibodies). Also, it is likely, some illnesses a re a mix of B cells ,T cells and innate immune system problem, as you already know if you come this far into research on your treatments. 

While early results on BCMA-targetted CAR-T cells alone show very promising results, the dual target CD19+BCMA might be needed to fully reset some B-cell mediated utoimmune illnesses. 

We wish to know too :)  There probably wont be one answer, and different targets will be better for different diseases (like CD19 vs BCMA), and also depending how severe the patient is ...