Recent therapeutic advances have transformed cystic fibrosis — adding decades of life and new hope for people living with this disease. To protect this progress, it's critical that people with CF can access high-quality, specialized treatments and care, regardless of income, insurance, or geography.

Living with cystic fibrosis is expensive. On average, people with CF rely on three oral and three inhaled medications daily and see a multidisciplinary care team four times a year. This treatment and care regimen can be expensive even for individuals with comprehensive insurance.

Although nearly all people with CF have health insurance, health care costs can quickly add up to more than what a family can afford, leading to difficult tradeoffs. Nearly half of people with CF and their families decide to delay or forgo care altogether. In fact, 71% of people with CF have experienced some form of financial hardship or issue due to medical bills, with 44% of people reporting challenges paying for at least one medication or service associated with their treatment regimen in the past year, according to a study conducted by George Washington University.

Key stakeholders, states, Congress, and government agencies are working to address prescription drug affordability. While the passage of the Inflation Reduction Act made significant strides in affordability under Medicare and the Affordable Care Act marketplace plans, more can be done.

The Cystic Fibrosis Foundation evaluates proposals as they are introduced and relay the needs of people with CF to policymakers so they understand how these changes could impact the CF community.

To see our recent work, visit our statements, letters, and regulatory comments page. 

Current Proposals

• Co-pay accumulator programs: The CF Foundation supports legislation that bans accumulator programs and requires insurers to apply co-pay assistance to cost-sharing requirements. This type of legislation has already passed in multiple states and the Foundation supports legislation introduced at both the federal and state level.  

  Most people with CF rely on some form of financial assistance to help afford CF treatments and care. Many insurers have implemented policies known as “accumulator programs” which prohibit manufacturer co-pay assistance from counting toward individuals' deductibles. As a result, people unexpectedly face high out-of-pocket costs early in the year. Insurers use accumulator programs to manage the rising costs of drugs they pay for their members. However, these programs are shortsighted fixes for systemic issues facing the health care system. Solutions to address treatment costs cannot come at the expense of a person's health and financial well-being.
• Co-pay caps: The CF Foundation supports out-of-pocket caps for insulin and other types of medication as appropriate and relevant for people with cystic fibrosis. To date, we have supported and seen passage of this type of legislation in several states and Medicare. This type of legislation bans insurers from charging enrollees more than a certain amount for a 30-day supply of a drug.
• Drug pricing and supply-chain transparency: The CF Foundation supports legislation that creates a more understanding on manufacturer and Pharmacy Benefit Manager (PBM) pricing practices. As lawmakers search for ways to curb prescription drug spending, increased transparency into how prescription drugs are priced and what portion of that price is paid by individuals is an important step. Transparency laws set out to make the starting price of a drug and subsequent price increases understandable to policymakers, advocates, and consumers. This information can provide a window into how manufacturers set prices and PBMs handle the discounts they receive from manufacturers.
• Patent Reform: The CF Foundation supports some policies to reform drug patents, particularly in circumstances when patent extensions are not linked to the clinical effectiveness of the drug. Prolonging a manufacturer’s control could delay the introduction of less expensive, generic alternatives, which has the potential to reduce premiums and cost-sharing for patients overall.
• Drug Affordability Review Board: The Foundation is not opposed to the concept of value-based drug reviews conducted by review boards or other entities that would allow decisionmakers to set an allowable rate for certain high-cost prescription drugs — but the review process news to be informed by all evidence available.

The CF Foundation is working alongside key stakeholders, including policymakers, payers, and drug manufacturers, to ensure that people with cystic fibrosis have access to comprehensive, specialized care and treatments that they can afford, as well as ensure a system that supports investment in new research and development.