SCENESSE® for Erythropoietic Protoporphyria – Getting Started

In order to start treatment with SCENESSE®, you will need to acquire an individual unique identifier number (ID) and contact an EPP Center in the US. Here are the steps to follow:

  1. Go to SCENESSE® (, select EPP Savings Program or Treatment Access webpage.
  2. Complete the “Check Your Eligibility” questions.
  3. Await an email from Clinuvel ( Clinuvel will email you within 48 hours with a request for documentation to obtain an individual unique identifier number (ID). The requested documentation will include:
    • Patient Authorization Form
    • Patient Registration Form
    • A copy of proof of confirmed EPP diagnosis
    • A copy of your Insurer's Medical Benefit guideline or similar, stating SCENESSE® coverage and as a medical necessity.
  4. Upon receipt of the four requested documents, Clinuvel will:
    1. Issue you an individual unique identifier number (ID) for login and password within 48 hours. Please save your unique ID in a safe place. This ID will not expire. You will provide the assigned an individual unique identifier number (ID) to the treating Center to order the SCENESSE® medication;
    2. Provide contact details of EPP Center(s) nearest you.
  5. Contact your preferred EPP Center and the Center will work with you to submit the Prior Authorization to your insurance on behalf of you.
  6. If you have a commercial or private health insurance, submit requested documentations to the Savings Program after you have received the treatment.