TAF Financial Aid Program Accepting New Porphyria Patients

Marisa Wexler MS avatar

by Marisa Wexler MS |

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The Assistance Fund (TAF) is accepting new eligible patients in the U.S. into its financial aid program for porphyria.

The program, which was launched last year, helps individuals to pay for out-of-pocket costs associated with treatment. Financial assistance applies to copays, deductibles, and coinsurance for approved medications; costs associated with traveling and treatment administration; costs related to disease management, such as copays for prescribing physicians; and costs for genetic testing.

Applicants must meet eligibility criteria and can call 855-927-1624 for more information. TAF runs dozens of similar programs for different rare diseases.

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Porphyria comprises a group of disorders characterized by disruptions in the production of heme — a molecule that is needed for red blood cells to transport oxygen through the bloodstream to the body’s various tissues and organs.

Heme is normally built from molecules called porphyrins, but when heme production is disturbed, porphyrins and other precursor molecules start to build up in body tissues. Eventually, these molecules reach toxic levels, causing damage to various organs and leading to the disease’s symptoms.

Porphyria is categorized into different types, depending on which step of the heme production pathway is disrupted, and which precursor molecules are building up to unhealthy levels. Broadly, porphyria is often characterized as either acute, affecting mainly the nervous system, or cutaneous, which mostly affects the skin.

Currently there is no cure for porphyria, though medications, as well as lifestyle changes, can help manage its symptoms. TAF’s program provides assistance in paying for three medications used to treat prophyria, including Givlaari (givosiran), which was developed by Alnylam Pharmaceuticals and approved to treat acute hepatic porphyria in the U.S. and European Union.

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TAF’s program also provides assistance in paying for Panhematin (hemin for injection) — a medication developed by Recordati Rare Diseases that is used to manage certain types of porphyria related to the menstrual cycle — as well as chlorpromazine, an anti-vomiting medication sometimes used in the management of porphyria. Chlorpromazine is sold as Thorazine, among other brand names.