Acer Therapeutics Inc., a pharmaceutical company based in Cambridge, MA recently signed an agreement with the Greater Paris University Hospitals AP-HP to gain exclusive rights to a clinical study that the hospital did of celiprolol's impact on vEDS.
This study was conducted in Europe and has been well known within the vascular Ehlers-Danlos community for years. Celiprolol is a generic drug in Europe and Canada and although proven safe around the world, it's not yet FDA approved in the US. This is the reason many vascular EDS patients ship celiprolol from places like Europe or Canada.
What this recent news means for us vEDS patients is that the pharmaceutical company Acer is going to use this research to try to get the drug approved by the FDA in the United States. If the drug is approved in the US it will mean patients will no longer need to buy the drug out-of-pocket from other countries as long as your insurance plan is willing to pay whatever Acer charges for the treatment. Since it will be a "rare disease drug" in the US and not a generic drug, there's a good chance this company plans to charge very, very high costs for the treatment.
We will keep you posted as this company continues pursuing approval for Celiprolol in the US.
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