Rituxan / Rituximab - Call for help

[MoJim]

Did a little research and found that "Rituximab is the newest therapy to consider" for Susac Syndrome. Since this is now public knowledge there should be a strong case to use it off label and be approved by the insurance co. R has been around for awhile, so the patents, hopefully, should be coming off soon. Generic biologics are going to be more complicated than chemical meds. Maybe someone more versed in the medical patent rules/laws can chime in. clinicaltrialcdotgov only showed two trials in Germany and France and I didn't see any mention of R. Off label use is fairly common in all areas of medicine and you don't need to be in a clinical trial. The doctor and caregivers/family should be pushing the insurance company hard, repeatedly.

Zobra, I don't know where your relative is located and I hope she is getting the best care. I am a Chronic Leukemia patient and was able to find a specialist/expert on the cutting edge. University settings, I highly recommend. I have also been administered R 2 or 3 times and it is done through IV over several hours. Getting any IOP R in a pill form would most likely be a scam.

Charon's advice is good, as usual, regarding going to the manufacturer. Also, do a web search on Susac Syndrome support groups. They will be able to point you in the right direction. There are non profits that may be able to help as well.

Zobra, your OP was 4 months ago, I truly hope that things have changed for the better for your relative.
MoJim

MoJim

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When I was working in oncology, it became a big deal with CAR-T therapy bc 1 single treatment cost literally 750k.  Ppl can’t afford that and some sides, including the dreaded ‘cytokine storm’ could easily claim a patient’s life.

For some it works, others...nothing.  Some...death.  

Long story short, if you were administered the drug and physicians see no improvement, or worsening of the malignancy, healthcare doesn’t pay them.

If the patients cancer goes into remission, the treatment is considered ‘successful’ and insurance coughs up the money.  

Unfortunately ‘successful remission’ to oncologists varies doc to doc, institute to institute...and sadly...most companies consider success if the patient gains an extra 3-5 months.

You and I were apparently responding at the same time and I didn't see your post. This is getting off topic, but since you mentioned CAR-T I'm compelled to respond. It is a very big deal to blood cancer patients and the FDA has now approved two CAR-T treatments. These immunotherapy/gene therapy treatments are getting better and I have been in two clinical trials using immunotherapy. My specialist has discovered the ROR-1 target and has developed a MAB (Cirmtuzumab) that is now in clinical trials. I keep waiting for a CAR-T trial involving this target as it is rarely found on non leukemic cells. I think the dreaded side effects may have been the CD19 CAR-T therapy.  To us it may be the holy grail, maybe not. If I may, in what capacity did you work in oncology? Thank you for your insight, it is appreciated. PM me if you like as this is getting off topic.