Rituxan / Rituximab - Call for help

[Zobra]

Hello community.

This is not about me, for once.  A young family member of mine has been diagnosed with a very rare and debilitating autoimmune disease called Susac Syndrome.  She's starting to lose her eyesight and hearing due to lack of blood flow.  The one drug that has the best chance to help her is very expensive and her health insurance company has denied it.

The drug is Rituximab, brand name Rituxan.  Her family is very distressed and trying to figure out a way to be able to afford this.  Do any of you have any idea where I might be able to source this?  I don't want to just start visiting random websites searching for it because that probably won't end well.  But if you have any suggestions I'd appreciate it.

[Charon]

while i look it up, go to website of manufacturer. Patients cannot afford these meds esp on medicare. So the manufacturing company will pay a significant portion of the meds. Probably, it is how the Big Pharma does experimental trials.

Let me see if I see any news on it. I rarely see meds of this caliber online but it is worth a try.

I absolutely detest that big pharma charges so much for a med, that the patient cannot afford it without the same big pharmas financial help. So check their web page first.

Let me see if anything comes up.

[Zobra]

It's called MabThera in other parts of the world, in case that rings a bell to anyone.

[Charon]

MabThera is known as Rituxan in the United States, Japan and Canada. Genentech and Biogen Idec collaborate on Rituxan in the United States, and Roche markets MabThera in the rest of the world, except Japan, where MabThera is co-marketed by Chugai and Zenyaku Kogyo Co. Ltd.Jan 31, 2011
Roche - FDA approves Rituxan/MabThera for first-line maintenance ...
hxxps://www.roche.com/media/releases/med-cor-2011-01-31.htm

Will try to look around. Sounds like it can make a very big difference. But i would try to get manufacturer of drug, hoffman roche? if they will give it for free or low fee to a very ill patient. they always claim on TV that the scripts doctors write are usually given cheaply to serious patients.

I hope she is entitled to any for free. Are you in USA? Maybe another country, as i found several whom make it, will donate it to your relative.

[thepianist]

FYI, any drug suffix with -mab indicates it’s a biologic drug. This suffix means monoclonal antibody and are extremely expensive unless you are enrolled in some clinical trial. Some have devistating side effects, others have tremendously helped patients.

It will be many years before these mAB drugs become reasonably priced. There’s a current push in Pharma to only charge cancer patients if the treatment works...I can’t recall the exact term they’ve coined this idea...but for those that need it for non-oncology needs...out of luck for the time being.

My advice: search and search for clinical trials using these biologics for ‘off-label’ purposes and get enrolled. Cost will be zero.

[Charon]

thank u for all the info.

and, it is beside the point, i suppose, but how and who decides if treatment worked? and for how long did it work? *the part about only charging if the treatment works.*

was researching another illness today. thank u for sharing ur wisdom.

[thepianist]

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.

[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

---

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.

[thepianist]

MoJim, you’ve colored me impressed with that knowledge. I’d have to catch back up with the most current state of affairs...you’re ‘the man’ on this subject though!

Best take hon I can tell our family needing these therapies: as pointed out by mojim, clinicaltrial dot gov is where you should spend time looking for clinical trials enrolling, ongoing, and completed. Have a wonderful Friday everyone.

[Rumor]

Insurance denials can be appealed, if the doctors office has not done this already. The low cost or no cost drug programs are called patients assistance programs.
Best of luck to you and your family.