Congress is considering two bipartisan bills that would help to ensure people living with cystic fibrosis have affordable access to the highly specialized treatments and care they require. The Cystic Fibrosis Foundation, alongside the CF community, calls on Congress to pass both the Pioneering Antimicrobial Subscriptions to End Upsurging Resistance (PASTEUR) Act and the Help Ensure Lower Patient (HELP) Copays Act without delay.  

The PASTEUR Act

People with cystic fibrosis face a heightened, life-long risk of chronic infections, from requiring routine use of antibiotics. The need for more antimicrobial options isn't unique to the CF community; it's a universal issue — with dire consequences. Every 15 minutes a person in the United States dies from an antibiotic-resistant infection. New antimicrobials are urgently needed to address this public health crisis. 

The PASTEUR Act would address the need for new, effective antimicrobials for difficult-to-treat infections by providing consistent post-approval payments to antimicrobial developers for access to their products, offering a sustainable incentive structure that does not currently exist in the U.S. This would help much-needed antimicrobials stay on the market while also encouraging their appropriate use, making them available to those who need them, like people with CF. 

The HELP Copays Act

Living with a rare disease like cystic fibrosis is costly and requires expensive, specialty drugs to help manage the disease. A recent study published in the Journal of Cystic Fibrosis showed that despite near-universal health care coverage, 74% of people with cystic fibrosis surveyed utilized financial assistance or grant programs to cover or offset their health care costs.   

The CF Foundation recognizes the challenges insurers face in managing the often high cost of these life-changing therapies, and that copay assistance programs mask larger cost and affordability issues in the health care system. However, cost containment strategies unfairly place patients in the middle of a fight that belongs between insurers, manufacturers, and pharmacy benefit managers. The tactics often instituted by insurers — like accumulator and maximizer programs, or the decision to not cover a high-priced medication altogether — often results in undue financial burden for the patient.

The HELP Copays Act would help to lower out-of-pocket costs for people with CF in two important ways. The legislation restricts cost containment strategies, like accumulators and maximizers, and requires health insurance plans to count the total value of any copay assistance received toward the annual deductible and out-of-pocket maximum for the enrollee. The bill also ensures that any item or service covered by the health plan is considered part of their essential health benefits package. This will help to protect patients from current practices that exclude coverage CF specialty medications.