Recent therapeutic advances have transformed cystic fibrosis, adding decades of life and new hope for people living with this disease. It’s critical that people with CF can access high-quality, specialized treatments and care, regardless of income, insurance, or geography. 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. A 2024 study of the CF community found that more than one-third of people with CF delay or forgo some aspect of their care due to cost. In fact, 68% of people with CF have experienced some form of financial difficulty or issue due to medical bills, including not being able to accumulate savings, taking money out of retirement or other long-term savings, and being contacted by a collection agency.
The CF Foundation supports legislative and regulatory proposals to curb patient out-of-pocket costs and improve access to care for people with CF.
Our Policy Positions on Prescription Drug Affordability Proposals
Our driving belief is that every person with CF who can benefit from an approved treatment should be able to access it without delay or undue burden. Too often, patients are caught in the middle between manufacturers and insurance companies. We support the policies outlined below and believe they help address patient access to and affordability of essential medications.
Copay Caps
The CF Foundation supports out-of-pocket caps for insulin and other types of medication relevant to people with cystic fibrosis. This type of legislation bans insurance companies from charging enrollees more than a certain amount for a 30-day supply of a medication. To date, we have helped pass legislation to cap the copay for insulin products in several states and Medicare.
Copay Accumulator Programs
Most people with CF rely on some form of financial assistance to help afford CF treatments. Many insurers have implemented policies known as "accumulator programs,” which prohibit manufacturer copay assistance from counting toward individuals' deductibles and out-of-pocket maximums. As a result of these policies, people face unexpectedly high out-of-pocket costs early in the year.
Insurers use accumulator programs to manage the rising costs of medications they cover 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.
The CF Foundation supports legislation banning accumulator programs and requiring insurers to apply copay assistance to cost-sharing requirements. With many states already adopting these protections, the Foundation continues to support similar efforts at both the federal and state levels.
Prescription Drug Carve Outs
Some health insurance plans label certain prescription drugs as “non‑essential,” even though they are needed to treat serious conditions like cystic fibrosis. By doing this, insurers avoid Affordable Care Act rules that limit how much patients can be charged. As a result, people with CF may face much higher out-of-pocket costs or have to pay for the full cost of their medication.
In some cases, insurers also push patients into special payment programs, sometimes known as Alternative Funding Programs, that look for other ways to cover medication costs — but the money paid through these programs doesn’t count toward the patient’s deductible or out-of-pocket maximum. This can leave people with CF paying more overall and struggling to afford their care.
The CF Foundation supports policy changes to make sure all drugs covered by an insurance plan are treated as essential health benefits, so families receive the cost-sharing protections the law was meant to provide.
The Foundation is also engaged in other drug pricing initiatives, such as Medicare price negotiation and prescription drug affordability boards.
Read more about our work to address prescription drug affordability for people with CF.