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Rare Disease ToolKit

Instructions:

This downloadable Access to Care Toolkit is a resource designed to help patients living with an Acute Porphyria 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 Porphyrias and we hope these resources will help you secure access to Panhematin when you need it most.

The toolkit contains the following materials:

 

Healthcare Conversation Tracker: Use this simple form to record your experiences and conversations with your doctors, nurses, insurance providers or administrative staff at the hospital. This will give you a clear record of what happened and support your access to care claims.

Customizable letters templates: Download the customizable letter template that pertains to you (as a patient, caregiver, or healthcare provider) and insert your personal details. You can send the letter to various stakeholders including:

  • Hospital administrator at the hospital that discontinued treatment
  • Local Ombudsman (a person that investigates and helps settle complaints)
  • Local and/or State Representatives (e.g., Congressman, Senators)
  • State Department of Public Health
  • Insurance Provider

Note: The letter provided is only a sample providing suggestions to the writer for composing his/her own letter. It is the writer’s responsibility to detail his/her own thoughts and experiences in a personally acceptable manner. All content is ultimately the responsibility of the writer.

AIP, HCP, VP Access to Care Fact Sheet: This fact sheet defines Acute Porphyrias, its symptoms and why it’s important for patients to get immediate access to approved treatments when necessary. Include this with your letter as an informational supplement for your recipient.

Patient Bill of Rights: Some states have a Patient Bill of Rights that can be used to support your appeal for access to treatment. Included in this toolkit is the Florida Patient Bill of Rights but they can also be found in MN, NJ, NC, and NY. If you don’t know whether your state has a Patient Bill of Rights or where to find it, call and ask your state or local public health office.

We hope this toolkit will help you to receive the treatment that you need and deserve.

 

If you have questions, please contact the American Porphyria Foundation at (713) 266-9617 or porphyrus@porphyriafoundation.com.