Congress: Up the Ante for People With CF

The Cystic Fibrosis Foundation, alongside the CF community, urge Congress to act swiftly in passing the PASTEUR Act and the HELP Copays Act. Both bills would have a substantial, positive impact on the cystic fibrosis community.

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Congress is considering two bipartisan pieces of legislation that would have a substantial, positive impact on the cystic fibrosis community. The Cystic Fibrosis Foundation, alongside the CF community, call on Congress to pass both the Help Ensure Lower Patient (HELP) Copays Act and the Pioneering Antimicrobial Subscriptions to End Upsurging Resistance (PASTEUR) Act.  


People with cystic fibrosis face a heightened, life-long risk of chronic infections, from requiring routine use of antibiotics. But the CF community is not alone in needing more antibiotic options. This isn’t a CF problem; it’s a human problem – with dire consequences. Every 15 minutes a person in the United States dies from an antibiotic-resistant infection. New antibiotics are urgently needed to address this devastating issue.

The PASTEUR Act would address the need for new, effective antibiotics for difficult-to-treat infections by providing consistent payments to antibiotic 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 antibiotics stay on the market while also encouraging appropriate use, and making them available to those who need them, like people with CF. 

The HELP Copays Act

Living with a rare disease such as 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 — more than 90% of people with CF are insured for the entire year — 74% of those 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 affordable issues in the health care system. However, cost containment strategies instituted by insurers, such as accumulator and maximizer programs, or the decision not to cover a high-priced medication altogether, unfairly place patients in the middle of a fight that belongs between insurers, manufacturers, and pharmacy benefit managers.

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 value of any drug manufacturer and nonprofit 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. 

Congress: It’s time to up the ante for people with cystic fibrosis and cosponsor the PASTEUR Act and the HELP Copays Act.

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Advocacy | Antibiotics | Public Policy
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