@Xeniax I agree with the post--it is also known as Cosyntropin and may be made by other companies, like Mylan?
Side query--has your daughter tried cannabidiol? It seems to help with some forms of epilepsy.
https://pubmed.ncbi.nlm.nih.gov/34624613/

@Xeniax an experienced doctor with big pharmaceutical connections can probably guess why

@Xeniax There is a statement saying it’s being rationed for hospital use only because production suffered some kind of disruption

@Xeniax
No explanation on the ANSM website.

But synacthene (without "retard") is still available.

France is experiencing A LOT of availability problems from several years.

@Xeniax Promoting to #Epilepsy #WestSyndrome

@Xeniax

You know likely reason why it was discontinued: no profit in a drug needed by a small minority. It's the same reason my wife had no treatment opportunities for her very rare autoimmune disease that affects only hundreds of people globally.

We don't need to privatize government agencies. We need to publicize Big Pharma and other corporations in control of the means of (life-saving) production.

@Xeniax @vivet_lili a peut-être une piste 🤔 🤷

@Xeniax

It seems that the formal name of the drug is Tetracosactide.

@Xeniax I'm glad you found a helpful treatment.

I'm not an expert, but I understand (might be wrong) that part of patent law is that patent holders are required to license a patent if they do not wish to exploit it directly. You can't "block" use of a patent because you hold it.

So, perhaps the patent holder could be persuaded to license it?

I hope you find a solution!

@Xeniax I am not a medical journalist, just a psychologist! I am living in France and checked the situation of "Synacthene Retard". The article below describes the situation.

Bottom-line: the product is hardly available in France and Europe. In order to maintain product availability for as long as possible, the prescription and dispensing of SYNACTHENE and SYNACTHENE RETARD must be strictly reserved for its indications in cases deemed a priority.

<https://www.sfendocrino.org/rupture-de-stock-de-synacthene/#:~:text=En%20raison%20de%20difficult%C3%A9s%20d'approvisionnement%2C,de%20SYNACTHENE%20RETARD%201%20mg>

@Xeniax sharing

@Xeniax
https://en.iranhormone.ir/product/synacran-tetracosactide-acetate/
Sun Pharmaceutical Industries Ltd can do this medicine too.

@Xeniax Boosted - good luck in your search. Is Lila okay now or does she still need the medication? The Wikipedia article suggests that most children 'grow out' of the condition; I hope your daughter is similarly better now.

@Xeniax

Beth Mole from arstechnica might have some info or interest.

https://arstechnica.com/author/beth/

@Xeniax ask your national medicines agency.
Or even EMA, the European Medicines Agency.
I don't know about the legislation on compassionate use in your country.

@Xeniax Oh no, that's awful. hoping for the best for you and Lila. (I have a niece with tuberous sclerosis, so I understand how challenging epilepsy can be.) ❤️

@Xeniax cc: @wonderfall any idea?

@Xeniax

Une piste?

"Le laboratoire Sigma-Tau, titulaire de l'autorisation de mise sur le marché en France, n'a pas pu identifier d'autres spécialités équivalentes en Europe, et le recours à une version commercialisée outre-Atlantique n'est pas actuellement possible pour le marché français."..