• Porphyria Patient Experience & Insurance Survey

  • Thank you for taking the time to complete this survey and contributing to research on health insurance and the porphyrias.

    Purpose: The purpose of this survey is to better understand the porphyria community’s experiences with health insurance coverage. What we learn will help us provide stronger support and resources related to coverage for clinical care and current and future treatments.

    Time commitment: The survey should take approximately 10 minutes to complete.

    Confidentiality: Your privacy and confidentiality are important to us. The information you provide will be used for internal purposes only to help us better understand healthcare coverage for porphyria care and treatment and identify ways to better support the porphyria patient community. Responses will be securely stored in a password-protected electronic file accessible only to authorized staff. If clarification is needed, a staff member may contact you directly by email.

    Contact: Please contact the United Porphyrias Association for more infomation or questions: 

    • Email:
      Kristen Wheeden: kristen@porphyria.org
      Liz Allan: liz@porphyria.org
    • Phone: 1-800-868-1292

    Participation is voluntary and you can stop at any time.

  • Consent

  • Do you agree to participate in this survey?*

  • Contact Information (Optional)

    This information will be used to provide updates on this initiative and to contact you directly for additional clarification.

  • Section 1: About You

  • Are you completing this survey as a:*
  • Type of porphyria*
  • Gender of person with porphyria
  • State

  • Section 2: Insurance Coverage

  • Do you have health insurance coverage?*
  • Type of health insurance plan:
  • Do you have supplemental insurance?*
  • What type of supplemental coverage?

  • Section 3: Use of Services 

  • How often did you use health insurance in the past 12 months for your porphyria treatment or management?
  • What services have you used in the past 12 months? (Select all that apply)
  • Were all the services you used in the last 12 months covered by insurance?
  • Are there additional health services you would like your insurance plan to cover to better support your porphyria care?

  • Section 4: Prescription Coverage for Porphyria Medication 

  • Have you or your physician tried to get insurance coverage for any of the following medications for your porphyria? (Select all that apply)
  • Have you or your physician tried to get insurance coverage for any of the following for your porphyria? (Select all that apply)
  • Have you or your physician tried to get insurance coverage for any of the following for yo apply) ur porphyria? (Select all that apply)
  • Have you experienced difficulty in getting coverage for your porphyria prescriptions?
  • What type of difficulty did you experience in getting coverage for your porphyria prescriptions? (Select all that apply)
  • Were you able to get coverage for your porphyria medication(s)?

  • Section 5: Satisfaction

  • Please rate your level of satifaction with the following:

  •

  • Section 6: Assistance Programs 

  • Have you requested assistance from any patient assistance programs (free drug, co-pay, deductible assistance, etc.)?
  • Reasons you have not requested assistance from a patient assistance program (select all that apply):
  • Was your assistance request approved?

  • Section 7: Challenges & Support

  • Thank you for your interest. 

    You are not alone on your porphyria journey. Please contact the UPA at info@porphyria.org if there is anything we can do to support you.

    If you would like to participate in the survey, please return to the previous page and consent.

  • Help Build a Physician Directory

  • Thank you for taking the time to complete this survey and contributing to research on health insurance and the porphyrias.

    We have one final request. United Porphyrias Association is building a directory of health care providers who are familiar with porphyria. If you are interested in contributing to this network, please share the details of your care providers.

    If your doctor is part of a Porphyria Center of Expertise, you do not need to add their names. They are :

    • Anderson, Karl
    • Balwani, Manisha
    • Beavan, Simon
    • Bonkovsky, Herbert
    • Erwin, Angelika
    • Karp Leaf, Rebecca
    • Keel, Sioban
    • Levy, Cynthia
    • Mazepa, Marshall
    • McGuire, Brendan
    • Moghe, Akshata
    • Quigley, John
    • Parker, Charles
    • Rudnick, Sean
    • Thapar, Manish
    • Wang, Bruce
    • Yeung (Dickey), Amy
  • Physician Information
  • Should be Empty: