Senator Judy Ward Fights to Protect Patients with Rare Diseases

HARRISBURG – Senator Judy Ward (R-30) voiced her support for new protections for patients suffering from rare diseases during a news conference at the state Capitol Building in Harrisburg today.

Ward spoke at a news conference in recognition of Pennsylvania’s Rare Disease Advocacy Day, along with representatives of the National Organization of Rare Disorders, Life Sciences PA, and patients and families suffering from rare diseases.

“During my nursing career, I witnessed firsthand the challenges and obstacles patients and their caregivers experience,” said Ward, who serves as Co-Chair of the Rare Disease Caucus. “I am so proud to look around and see my colleagues from both sides of the aisle and from both sides of the Capitol join together in support of the common goal to help those Pennsylvanians who suffer from a rare disease.”

Ward recently announced plans to sponsor bipartisan legislation with her fellow Rare Disease Caucus Co-Chair Senator John Blake (D-22) that would ensure patients get the full benefit of all available prescription co-pay assistance programs, including co-pay coupons and manufacturer’s discounts.

In current practice, insurance companies and pharmacy benefit managers (PBMs) implement co-pay accumulator programs that prevent these discounts from being counted toward meeting the patient’s health care plan deductible.

This discriminatory practice often leads patients with rare diseases to reach a “cost cliff” in the middle of the year once they have used the entire amount of their co-pay card or coupon, forcing patients to pay the full cost of prescriptions until they meet their deductible or out-of-pocket limit.

Because therapies and treatments for rare disease patients typically cost more than other classes of drugs, the use of co-pay accumulator programs have a disproportionate financial impact on rare disease patients and their families, Ward said.

“Treatments for rare diseases are not a luxury for patients. They make an enormous difference in the health, well-being and quality of life of the individuals who suffer with these conditions on a daily basis,” Ward said. “We need to make sure that prescription discount programs help patients get the care they desperately need, not financially benefit PBMs and insurance companies at the expense of the people they serve.”

Ward’s bill would end the use of copay accumulator programs and ensure any amount paid on behalf of the enrollee by another person or entity toward that individual’s health care plan is counted toward the patient’s deductible or out-of-pocket limit.

More information about Ward’s bill is available here.

CONTACT:  Cheryl Schriner (717) 787-5490

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