The Assistance Fund Launches Aid Program for Out-of-pocket Medical Costs
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.”
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.