xeniax ⏚Nov 30

Dear Fedi friends.

As some of you may know, I have a wonderful daughter Lila who had a severe form of epilepsy at the age of 5 months. This epilepsy is called West Syndrome.

We had to go through a hell of a treatment to stop her seizures. The thing that helped her was called "Synacthene Retard". It's basically ACTH, a synthetic hormone similar to adrenocorticotropic hormone produced by our anterior pituitary gland.

My daughter was one of the last kids who had a chance to get the Synacthene Retard from the lab that produced it (Alpha Sigma). This was late March 2024. And in May 2024 Alpha Sigma said they discontinued this product without ANY public explanation.

I am trying to inquire about the disappearance of Synacthene Retard from French pharmacies. I am looking for contacts of a medical journalist or an expert in pharmaceutics to help me lead this investigation. It may save lives of dozens of other kids with that suffer from West Syndrome. Thank you!

Show threadKevin Karhan Nov 30

@Xeniax Does the manufacturer at least offer licensing out the production?

  • If not I hope the regulators force them into #FRAND schemes or void any patents on that medication production process.
Show threadxeniax ⏚
@kkarhan thanks for the question. I haven't checked yet. I will try to find out.
Nov 30 at 12:08pmWeb
Show threadKevin Karhan Nov 30

@Xeniax obviously I assume they make this in like "bioreactors" with GMO'd yeast or bacteria - like most complex biological molecules like hormones and enzymes - so it does necessitate quite a buildup and a certified plant and engineers to run it, but is quite cheap to maintain a production line when adjusted for the yield.

  • But it's neither impossible nor uncommon to see that being done...

I sadly don't know any pharmacologist or contact at any pharmaceutical company to poke at and get them to look at it.

  • Tho I hope you can get some generics manufacturers that do similar products (like hormones and enzymes) to get interested in.