I know many of you have been wondering when help will be available via ARA290 (Cibinetide) so I wrote directly to a Co. rep. below is the answer I received.

"I am so sorry to hear about your condition. The stories that patients like yourself share are heartbreaking, and we are doing our best to get this drug to the patients. Unfortunately, it will be at least 3-4 years until we receive FDA approval. If you'd like, I can keep your contact information on file and contact you should we begin enrolling for a clinical trial."

Thank you for posting this, Cliffman. Do we know whether it will be made available for SFN in general when it is finally made available, or whether those of us who are, for example, idiopathic will not have access to it?

I suspect that the initial studies will narrow the therapeutic choices. Medical studies do this and if approved it will be for sarcoidiosis and/or diabetic neuropathy.

If this happens, the FDA will approve for only the minimum parameters. The insurance then will only pay for this new drug for those parameters.

Lidoderm patches were only paid for post herpetic neuralgia, with previous occurring shingles. I was lucky to have had shingles, and testing for them, so I could use the patches for my MP pain. ( and also other nerve PN issues). Now of course, the new OTC lidocaine patches anyone can buy without a Dr's order.
The OTC ones are 4% and the older RX ones are 5%.

The lidocaine patches RX were over 300.dollars out of pocket for a month's supply!
That was many years ago... and I'd expect this ARA drug to be much more.

Here is an example of a new drug for HAE which I was diagnosed with 3 yrs ago...
Cinryze, a Human Plasma-Derived C1 Esterase Inhibitor for Prophylaxis Of Hereditary Angioedema

I have 2 attacks per month on average, and this would be more than $5,000 if my insurance would cover it. I have not decided to use this injectable, and am waiting for an oral type. If I have a breathing attack that decision will change for me. This is just an example of costs for new meds.

That's sounds about right. Thanks for posting. The drug prices in the USA are horrible, and I can't imagine what one would do without good insurance or personal wealth. I'm sorry that you have to deal with such prices. What about a generic version of this drug being made available? Would that be possible, say from an online pharmacy that purchases from India, or does that only happen with older medications? I wonder how that works.