New Assistance Fund program will aid underserved SCD patients

Assistance initiative addresses critical care 'gap,' said SCD advocates

Andrea Lobo, PhD avatar

by Andrea Lobo, PhD |

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A red ballon floats upward with a number of other balloons, emblematic of a rare disease.

The Assistance Fund (TAF) has launched a new financial assistance program to cover out-of-pocket medical expenses for people with sickle cell disease (SCD).

The program will cover copayments, health insurance premiums, costs related to ground travel needed to get treatment, and genetic testing, for people with SCD who are underinsured and face high health-related costs.

SCD is a genetic disorder characterized by the production of a defective version of hemoglobin — the oxygen-carrying protein in red blood cells. The faulty version, called hemoglobin S, causes red blood cells to acquire a sickle-like shape and die prematurely, leading to anemia and other complications.

Although it can affect anyone, it’s more common in Black or African Americans, with one in 13 Black Americans born with a copy of the gene encoding hemoglobin S, referred to as the sickle cell trait.

“Thanks to the generosity of our donors, our Sickle Cell Disease Financial Assistance Program will help patients access treatment that alleviates their symptoms and allows them to live longer lives,” Missy Jenkins, TAF’s vice president of external affairs, said in a press release. “For too many people living with sickle cell disease, the diagnosis is a double-edged sword of a lifetime of symptoms and pervasive cultural stigma.”

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Improving SCD healthcare access

TAF is an independent charitable organization that provides financial assistance, education, and advocacy to people with chronic, rare, or life-threatening conditions, and their families. Its main goal is to support underinsured patients facing out-of-pocket medical costs.

“The Assistance Fund’s Sickle Cell Disease Financial Assistance Program will improve healthcare access and outcomes for thousands of people living with sickle cell disease,” said Andrew Campbell, MD, director of the Comprehensive SCD Program at Children’s National Hospital in Washington D.C. “As a member of The Assistance Fund’s Medical Advisory Board, I appreciate the opportunity to help TAF open new disease programs that support underserved and overlooked communities.”

Currently, more than 80 disease programs are managed by the organization. These programs cover all the FDA-approved medications that treat a specific disease. Since its founding in 2009, TAF has helped almost 180,000 children and adults get access to treatments.

“By launching this important program to assist people living with sickle cell disease, The Assistance Fund is addressing health and equity challenges head on,” said Sohail Rana, MD, pediatrician and professor of pediatrics and child health at Howard Hospital. “I’m proud to be a member of TAF’s Advocacy Committee and to fight for the day when every patient can get the care, testing, and treatment they need at a cost within reach.”

Teonna Woolford, CEO at Sickle Cell Reproductive Health Education Directive, said the program addresses a big gap in health care by “making critical treatment accessible for an underserved community.”

“Today is a great day for the sickle cell disease community,” Woolford said.