Congress: Up the Ante for People With CF

The Cystic Fibrosis Foundation, alongside the CF community, urges Congress to pass the PASTEUR Act and the HELP Copays Act. 

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Congress is considering two bipartisan bills that would help 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.


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. 

Antimicrobial resistance has a substantial impact on the U.S. economy. According to a 2022 report from the National Academies of Sciences, Engineering, and Medicine, the direct medical costs in the U.S. of treating only six of the most common drug-resistant pathogens is $4.6 billion per year. Notably, this figure does not include associated and downstream costs, including the cost to the health system after discharge, lost wages, diminished worker productivity, short- and long-term disability, mortality, and cost burden on families and caregivers.

The PASTEUR Act is bipartisan legislation key to fighting the public health crisis of antimicrobial resistance through stabilizing the broken antibiotics marketplace. 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 and also encourage their appropriate use, so that they remain available to those who need them, like people with CF. 

Furthermore, if the United States invested just $1 billion annually (or around 0.016% of the 2023 federal government spend) in new, high-impact antimicrobials through legislation like the PASTEUR Act, the return on investment would be 6:1 over a decade, and 28:1 in 30 years. This represents a significant value for the U.S. taxpayers. 

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 managing the high cost of these life-changing therapies, and that copay assistance programs mask larger cost and affordability issues in the health care system. However, strategies to lower costs and spending — known as cost containment strategies — unfairly place patients in the middle of a fight that belongs among insurers, manufacturers, and pharmacy benefit managers. The tactics insurers often use — like accumulator and maximizer programs, or the decision to not cover a high-priced medication altogether — can result in undue financial burden for the patient.

The HELP Copays Act would help 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 enrollee's annual deductible and out-of-pocket maximum. 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 of CF specialty medications. 

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

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Advocacy | Antibiotics | Public Policy
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