Porphyria Post

CMS Temporary Guidelines for Home Infusion/Injection


A new CMS (Centers for Medicare & Medicaid Services) temporary guideline released on Monday gives acute porphyria patients who are Medicare (Part B and D) beneficiaries the opportunity to receive Panhematin infusions or Givlaari injections at home. The temporary changes were made to ensure that patients have access to care while remaining safely at home adhering to CDC guidelines.

CMS provided two temporary pathways through with patients can receive medical care in their home:

1. Telehealth/Home Health Agency: The treating provider would contract with an entity (home care agency, etc) to administer Part B drug to patients in their home. If direct physician supervision is required, it would be performed through telemedicine (video, audio or both as needed).

2. Homebound/Home health beneficiaries with conditions that present increased COVID-19 risk: CMS temporarily expanded the definition of “home bound” to include patients w/ heightened risk justifying a “stay home” recommendation. The treating physician would certify that the patient is at heightened risk, including complying with CDC social distancing guidelines.

Please contact your physician to begin the process for this service if you qualify.


Update on Phase Three Clinical Trial for EPP Participants with Erythropoietic Protoporphyria (EPP) and X-Linked Protoporphyria (XLP) are needed!


We are writing with the exciting news that Mitsubishi Tanabe is announcing a Phase 3 trial for MT-7117 for patients with EPP.

The hard work of those who participated in the Phase 2 trial paved the way for this FIRST clinical trial that includes adolescents.

Trial Description: A Phase 3, Global, Multicenter, Randomized, Double-Blind, Placebo-Controlled Study to Evaluate Efficacy, Safety, And Tolerability of MT-7117 in Adults and Adolescents with Erythropoietic Protoporphyria (EPP) or X-Linked Protoporphyria (XLP)

Treatment: Oral medication (pills), once daily in the morning with or without food Duration: 26 weeks plus optional 26 week double-blinded extension.

Endpoint: Increased pain free light exposure in adults and adolescents with a history of phototoxic reactions from EPP or XLP.

Study Sites: There will be 12 study sites in the US, followed by global study sites across multiple countries.

Age Range: Patients age 12- 75 Travel will be included and will be arranged by a concierge service trained on EPP/XLP.

Please contact the American Porphyria Foundation for more information and we will connect you with a study site nearest you.


OR call 866-APF-3635 301-347-7166

We look forward to hearing from you!


COVID-19 Updates on the APF Website


The APF is working hard with the Porphyrias Consortium to make sure that our community is kept up-to-date on the latest COVID-19 news - as it pertains to patients with porphyria.

We have dedicated a special section of our website to COVID-19 updates and information.

IMPORTANT: Patient Education Meeting Cancellation - Birmingham, AL

After careful consideration, The American Porphyria Foundation (APF) has made the decision to cancel the Patient Education and Support Meeting, in Birmingham AL - scheduled for April 25, 2020 - due to the continuing spread of COVID-19 (Coronavirus). We regret to inform you of this decision, however, our greatest concern is the health and well-being of our members. The APF is working on rescheduling this meeting in the near future.

If you have any questions, please contact Edrin Williams, Director of Patient Services here at the APF office via phone at: 301.347.7166 or via email at:


Start Planning Now for Porphyria Awareness Week 2020!

Porphyria Awareness Week 2020 is coming up. Along with the tagline: #Ask Me About Porphyria, the APF website is a great source for information and ideas on how to create awareness in your community.

Shadow Jumpers Deadline Extended to April 10th!


This year’s Find Your Shadow Program will be selecting kids who are attempting to do something they have always wanted to try but may have been holding off attempting because of their EPP. Whether that is attempting recess, an outdoor sport/camp, a family vacation and more, nothing is off limits! We ask EPP families to submit their story and tell us how we can help make your dealings with EPP easier.

With the new deadline of April 10h, there's still time to get applications in!

Click Here to Access the Application & to Learn More About Shadow Jumpers

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"Remember....Research is the Key to Your Cure!"