CF Foundation Urges Congress to Prioritize Patients in PBM Reform

Centering the patient experience is the only way to successfully reform pharmacy benefit manager practices

June 15, 2023 | 4 min read

BETHESDA, Md. — The Cystic Fibrosis Foundation has issued the following statement in response to the ongoing negotiations and several bills being considered to limit the influence of pharmacy benefit managers (PBMs):

On behalf of the nearly 40,000 people with cystic fibrosis in the United States and their loved ones, we applaud Congress for taking steps to reform the egregious practices of PBMs, and urge members to pass meaningful legislation that prioritizes the needs of patients. PBMs have created numerous obstacles in navigating an already complex health care system and undue administrative, financial, and health burdens for people with chronic diseases, like those with CF, who are trying to access essential specialty medications. Too often people with CF are caught amid the red tape of drug manufacturers, PBMs, and insurers. As Congress sets its sights on increasing the transparency and accountability of PBMs, they must recognize the role PBMs play in deciding what medications an insurer covers.

It is critical to give patients a seat at the table where decisions are being made that will impact their health and wellbeing. Centering the patient experience is the only way to ensure successful PBM policy reform.

Effectively centering the patient experience in PBM reform negotiations requires:  

  • Giving patients a seat at the table. Patients are subject matter experts in their disease and the many steps it takes to obtain their medications. Throughout PBM reform negotiations, patients stand ready as a resource. Whether that comes in the form of in-person testimony, constituent meetings, or patient roundtables, Congress needs to incorporate the patient experience into all reform. 

  • Increasing transparency measures for PBMs and insurers to guarantee patients receive better information about coverage policies for specialty drugs. By having clear information on the requirements for obtaining specialty medications, patients can access their treatments more efficiently without undue burden.  

  • Including the Help Ensure Lower Patient (HELP) Copays Act in any PBM reform legislation. The bill requires payers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing requirements while ensuring any item or service covered by a health plan is considered part of their essential health benefits package. This bill will eliminate the path for third parties to exacerbate patient cost and administrative burden. 

  • Ensuring accountability. The opaqueness of the health care system has made it hard to hold stakeholders accountable for actions that drive up patient costs. Improved transparency and reporting requirements allow entities to hold PBMs accountable and respond when policies are not operating in the patient’s best interest.

The CF Foundation believes that all people with CF deserve access to high-quality, specialized care and treatments and will support policy reform that prioritizes the CF patient experience.

About the Cystic Fibrosis Foundation

The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis. The Foundation funds more CF research than any other organization, and nearly every CF drug available today was made possible because of Foundation support. Based in Bethesda, Md., the Foundation also supports and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease. The CF Foundation is a donor-supported nonprofit organization. For more information, visit

Media Contact
Katie Haswell 
Phone: 240-200-3706

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