Editor’s Note: Patient Worthy is proud and honored to share this article, provided by our friends at The Assistance Fund.
Every year, thousands of families receive a rare disease diagnosis. After the initial shock of the diagnosis, they often face another devastating reality: the cost of treatment. For too many patients, even those with health insurance, out-of-pocket costs can put critical treatment out of reach. No one should have to choose between their health and their financial security.
For people living with rare diseases, the financial burden often extends beyond medication costs to include frequent specialist visits, travel to centers of excellence, diagnostic testing, and ongoing care. Even with insurance, these expenses can quickly become overwhelming.
That’s where The Assistance Fund (TAF) steps in. TAF is an independent charitable organization that helps insured people living with life-changing diseases overcome the financial barriers preventing them from accessing treatment. Since 2009, TAF has helped more than 260,000 children and adults living with a life-changing disease through nearly 110 disease-specific programs, including more than 60 for people living with rare diseases.
Each disease program supports all FDA-approved treatment options for that disease and helps eligible patients afford the care they need by covering costs such as copays, coinsurance, deductibles, health insurance premiums, and certain incidental medical expenses. Eligibility is based on factors such as diagnosis, insurance coverage, and household income. Patients receive assistance for the full calendar year, with no annual cap on the amount of assistance they can receive, and may reapply if they continue to need support.
For many patients, receiving financial assistance means finally being able to start—or stay on—the treatment their physician has prescribed. For Andi, that support made effective treatment possible after years of searching for answers. Since childhood, she had experienced unexplained illnesses and frequent infections. Eventually, she was diagnosed with primary immunodeficiency, a rare disease that prevents the immune system from functioning properly. Once she began infusion therapy, her health, and her life, began to improve.
“All the pieces of my life kind of fell together,” Andi said.
With help covering the cost of treatment, she has been able to continue the infusion therapy that has dramatically improved her quality of life.
Janni’s journey was just as long. After decades of unexplained health problems, including stress fractures, rib injuries, and extensive dental issues, she finally learned she had hypophosphatasia, a rare genetic disorder.
“For 68 years, nothing threw up a red flag,” she said. “I was a nurse for 40 years and never heard of hypophosphatasia.”
Financial assistance helped remove one more obstacle so she could focus on managing her condition rather than worrying about how to afford treatment.
Stories like Andi’s and Janni’s are reminders that receiving the right diagnosis is only part of the journey. Accessing treatment can present another significant hurdle, especially for people living with rare diseases.
Last year alone, TAF helped more than 72,000 people access the treatment they needed. Behind every one of those individuals is a story—a parent, grandparent, spouse, sibling, friend, or neighbor whose life was changed because financial barriers did not stand in the way of care.
For people living with rare diseases, access to treatment can mean the difference between simply surviving and truly living. Financial assistance helps make that possible, giving people the opportunity to focus on what matters most: their health, their families, and their futures.
Patients and caregivers can visit tafcares.org to explore available disease programs, review eligibility requirements, and learn whether financial assistance may be available for their condition.
