Mastodawn

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!

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Benjohn Nov 30

@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!

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xeniax ⏚Nov 30

@benjohn thank you! Thats precious

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Benjohn

@Xeniax Apparently this is the case in the UK (and perhaps other places) – https://www.legislation.gov.uk/ukpga/1977/37/section/48 … but it may not be in the US (and perhaps other places) https://en.wikipedia.org/wiki/Compulsory_license

I con't know how this would be resolved internationally!

Patents Act 1977

An Act to establish a new law of patents applicable to future patents and applications for patents; to amend the law of patents applicable to existing patents and applications for patents; to give effect to certain international conventions on patents; and for connected purposes.