Panhematin Patient Assistance Program


If you have had problems receiving Panhematin treatment for any reason, please contact Desiree Lyon Howe, APF Executive Director, at .

Please note that there is a patient assistance program that was developed to help patients who experience issues with access to treatment and offers comprehensive assistance for insurance related issues.

Contact 1.866.209.7604 to access this program.


Below are a few problems that have been brought to our attention. We hope to help.

Some people have been admitted to the hospital expecting treatment and received none.

Some have been given only one vial instead of the usual 4.

Some have been told the treatment is too expensive to order or that it is only for very serious cases.

Some have standing orders for Panhematin and the orders were ignored.

Others have heard that Panhematin will take too long to arrive, when it can arrive within 16 hours of ordering.

Others have been told in the ER that there is nothing that can be done for their disease. 

The excuses to treat are plentiful. Please note that every attack can be serious and should be treated per the doctor. 

Please let us know your situation.

Upcoming Events

The APF Office will be closed on Monday, February 19, 2018 and will reopen for normal business hours on Tuesday, February 20, 2018.



Givosiran Trials

The phase 3 trials for Givosarin have started. The purpose of this study is to evaluate the use of this medication to prevent or reduce attacks and symptoms in those with an acute porphyria (AIP, HCP, VP, ADP). If you are interested in participating for this exciting new trial, call Edrin at the APF 713.266.9617 or 1.866.APF.3635



Submissions for the Shadow Jumpers Light The Moment 2018 are due. If you are intending on submitting an application, please do so now. Application on the link below.




Contact Information

Is your contact Information up to date?

If not please give us a call @ 866-APF-3635 or Email to


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