Today, the Cystic Fibrosis Foundation released the following statement in response to the decision by Vertex Pharmaceuticals to decrease copay assistance for people with cystic fibrosis:
The Cystic Fibrosis Foundation’s mission is to work to ensure that all people with cystic fibrosis have the opportunity to lead long, fulfilling lives. Our community is our priority. We are relentless in our pursuit of a cure for this disease, while also advancing high-quality, specialized care and treatments. When people with CF had little hope, we invested in innovative scientific research that ultimately led to modulator treatments that have had a transformative impact on more than 90% of those with the disease. And we continue to take bold and focused steps to make sure we leave no one behind.
The existence of life-changing treatments means nothing, however, without the ability to access them. The recent decision by Vertex to significantly decrease the amount they provide patients and families through copay assistance programs threatens the ability of individuals with CF to benefit from these modulators. The Foundation has made it clear to Vertex that we believe this decision is deeply concerning and harmful to our community.
Living with cystic fibrosis already comes with many challenges, and this change has the potential to place an additional emotional, financial, and health burden on many people with the disease. More concerning is the fact that the change will have a disproportionate impact on already vulnerable populations who must make unfortunate tradeoffs every day between paying for essential medication and other essential cost of living expenses. Further, many in our community may not be aware of the impact of the change until after it negatively impacts them in the coming year.
The CF Foundation is working strenuously to help the community learn about these changes, prepare for the potentially negative impact, and explore the best coverage options for them through our patient support program, Compass. At the same time, we are clearly expressing our concern with the decision-makers at Vertex and with insurers, and sharing the growing concern of people with cystic fibrosis, their families, and their care team members about how difficult it is – and will be – to navigate this complex changing landscape.
We continue to strongly urge Vertex to swiftly address this issue to ensure no additional burden is placed on the CF community, and that no person with CF will go without or lose access to these essential treatments because of this change.