The Cystic Fibrosis Foundation continues to call on Vertex Pharmaceuticals to address the serious consequences of its decision to make changes to their company’s copay assistance program for people with CF. We believe this decision will impose irreparable harm on the CF community and we urge the company to roll back their decision immediately.
Since Vertex’s initial communications about these changes to the CF community in October, the CF Foundation has engaged with Vertex to help them understand the onerous, arbitrary, and unfair burden their decision places on people with CF. Our efforts to support the CF community include:
Multiple letters and meetings with Vertex executives and regular meetings with programmatic leadership
Targeted educational resources on cff.org (in English and Spanish), including an accumulator Q&A page and blog post
Public statement on cff.org
Meetings with payers requesting they exempt CFTR modulators from accumulator programs
Facilitating an advocacy campaign in support of H.R. 5801 HELP Copay Act, a bipartisan bill that would require health plans to count copay assistance toward patient cost-sharing requirements
Ongoing support for state legislation banning accumulator programs
At the core of these efforts is the personalized support provided through CF Foundation Compass case managers, who handled more than 300 cases in the last two months regarding these changes.
The Foundation also facilitated a nationwide letter, signed by 206 CF care center program directors, urging Vertex to rescind their 2023 program changes, if not permanently, then for one year to properly prepare and educate patients and care teams on the transition. The letter expressed the providers’ clinical concerns, including the clinical harm to people with CF who lose access to CFTR modulator therapies, and the financial and administrative burdens placed on families, potentially forcing patients to stop or reduce their modulator doses.
“After such tremendous strides forward for so many fortunate enough to benefit from CFTR modulator therapies, the potential for deterioration in health status is untenable,” wrote Jerry Nick, MD, chair of the Cystic Fibrosis Foundation Center Committee, in the letter. “We are greatly concerned about the impact of these program changes on people with CF. For some it could be a matter of life and death. No person with CF should endure interruption in transformative modulator therapy or even fear that possibility.”