Porphyria Out-of-pocket Costs Paid By Nonprofit Assistance Fund - Porphyria News

To help patients and families facing out-of-pocket medical costs, The Assistance Fund (TAF) has opened a new program for eligible individuals living with porphyria.

The TAF Porphyria Financial Assistance Program helps with therapy-related copayments, health insurance premiums, and incidental medical expenses related to the metabolic disorder, which has an estimated prevalence of 1 in 500 to 1 in 50,000 individuals worldwide.

“People living with porphyria experience symptoms that cause extreme discomfort, including severe abdominal pain, nausea and even paralysis,” Mark P. McGreevy, president and CEO of The Assistance Fund, said in a press release.

“Thanks to our generous donors, TAF’s new Porphyria Financial Assistance Program will allow people living with porphyria to manage their symptoms without the worry of how they will pay for their treatment,” McGreevy said.

Usually inherited, porphyria is a group of disorders caused by the buildup of natural chemicals that produce porphyrin in the body. Porphyrins are essential for the function of hemoglobin, a red blood cell protein that links to porphyrin, binds iron, and transports oxygen to organs and tissues.

Generally, porphyria can be categorized as either acute — mainly affecting the nervous system — or cutaneous, which largely affects the skin. Some types of porphyria have both nervous system and skin symptoms.

Porphyria symptoms vary widely in severity and type. Treatment depends largely on the specific type of porphyria with which a patient is diagnosed.

Although the disease can’t yet be cured, certain lifestyle changes, including in diet, can help manage some of its symptoms. Givlaari (givosiran), developed by Alnylam Pharmaceuticals, was approved in November 2019 by the U.S. Food and Drug Administration for the treatment of acute hepatic porphyria. The European Commission more recently approved Givlaari for the same indication.

“A porphyria diagnosis is often overwhelming for patients based on the symptoms alone,” said Kristen Wheeden, executive director of the American Porphyria Foundation. “It is imperative that people living with porphyria have access to available treatments to minimize their pain and discomfort while increasing their quality of life. We are grateful to The Assistance Fund for opening this program.”

For more information or to determine eligibility, go here or call 855-927-1624. Visit this site for a listing of all TAF programs.

Established in 2009, the nonprofit TAF manages more than 70 funds, each of which covers federally approved therapies that treat a specific disorder. To date, it has helped more than 100,000 adults and children.

• Author Details

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”

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Joana holds a BSc in Biology, a MSc in Evolutionary and Developmental Biology and a PhD in Biomedical Sciences from Universidade de Lisboa, Portugal. Her work has been focused on the impact of non-canonical Wnt signaling in the collective behavior of endothelial cells — cells that made up the lining of blood vessels — found in the umbilical cord of newborns.

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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”

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