Make this a reality.

“ I implore the FDA to make this a reality instead of a hope and a wish for everyone with EPP.”

I am a 67 year old female. I have suffered with EPP all of my life. I had the same stories that others in our little community missing this same enzyme. I can recall countless instances of pain and isolation throughout my life. In February of 2023 my Hematologist Dr. Raemaker asked me if I would like to pursue the possibility of Clinuvel Pharmaceuticals product called Scenesse. This implant was approved by the FDA in 2019.

I received my first implant in June of 2023. The implant is placed every 8 weeks by a wonderful group of Dermatologist at the Nebraska Med Center in Omaha. My results are a complete game changer. I work in my garden, I go for walks in the afternoon, I drive without concern about where the sun is, I play outside with my grandsons. I am on Medicare with a wonderful supplemental insurance.

I have not taken the oral bitopertin.

What this medication will do that Scenesse does not is make it a possibility those younger than 18 years old. Everyone that suffers with EPP and their families know the pain and isolation that EPP causes in children. Scenesse is wonderful but very expensive. As an oral medication bitopertin would be less expensive. I implore the FDA to make this a reality instead of a hope and a wish for everyone with EPP.

- Patricia Pickering