Access to Care Toolkit

A downloadable Access to Care Toolkit is a resource designed to help patients living with Acute Intermittent Porphyria (AIP), Hereditary Coproporphyria (HCP), and Variegate Porphyria (VP) or their caregivers, loved ones and healthcare providers secure access to Panhematin at their preferred health facility.  We have recently learned of patients who are being denied this treatment from some hospitals and directed to secure another healthcare provider.  If this has happened to you or someone you know or care for, please use these tools to request help from your state and local representatives and health advocacy organizations.  We understand the debilitating effects of acute porphyria and hope these resources will help you secure access to Panhematin when you need it most.


The Toolkit contains the following materials:

*Healthcare Conversation Tracker is a simple form to record your conversations with doctors, insurance agents, etc.

*Customizable letter templates to record your details to use for doctors, state departments, insurance, etc.

*Access to Care Fact Sheet defines AIP, its symptoms and why it's important for patients to get immediate care

*Patient Bill of Rights can be used to support your appeal for access to treatment


This Toolkit can be found on the APF website.  Contact the APF office today on 713.266.9617 or 1.866.APF.3635 if you have questions!


Access to Care Toolkit:


Join the APF!

 Call the APF on 1.866.APF.3635 to join the APF today! Membership is FREE! We will send you and your physician a complimentary packet and also subscribe you to our weekly Porphyria Post where you will learn about research opportunities, upcoming events and much more.


"Remember....Research is the key to your cure!"