Ward Calls for Legislative Action on Rare Disease Day

News Conference

Senator Ward Comments

HARRISBURG – Sen. Judy Ward (R-30) called for legislative action on Monday, Feb. 28 – a date recognized across the world as Rare Disease Day – to expand access to medical treatments for residents living with rare medical conditions.

Ward introduced Senate Bill 196, known as the Copay Accumulator Reform Measure, to require health insurers and pharmacy benefit managers to help residents living with rare diseases maintain access to necessary, life-saving treatments.

“For patients with rare diseases and complex conditions, there are rarely, if ever, cheaper alternatives or low-cost generics,” Ward said. “As a nurse, I sat with so many patients, parents, grandparents, siblings and caregivers affected by these conditions. Something like that never leaves you.”

Ward was joined by other members of the General Assembly’s Rare Disease Caucus and the Pennsylvania Rare Disease Advisory Council to bring awareness to more than 7,000 rare diseases that impact an estimated 1.2 million residents. About 95% of those conditions lack any known treatment.

“Can you imagine that? As a parent or as a patient, to know from the start of your diagnosis, you are fighting high treatment costs and tough financial decisions on top of a rare illness,” Ward said. “That is why the work of the PA Rare Disease Advisory Council is so important and our collaboration with them is instrumental in amplifying the needs of the rare community.”

Senate Bill 196 and its companion legislation, House Bill 1664, await consideration in the General Assembly.

Twelve other states, including West Virginia, have enacted similar reforms to help those living with rare conditions.

“Working with the PA Rare Disease Council and a coalition of patient organizations, I feel very confident that my colleagues on both sides of the aisle will help Pennsylvania’s rare disease community by making this part of their medical journey a little easier,” Ward said.

CONTACT: Nathan Akers, 717-787-5490

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