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Ten patient and provider groups, representing millions of Americans, issued the following statement in response to the release of the nonpartisan Congressional Budget Office's (CBO) scores of two pieces of health care reform legislation currently being considered by the U.S. Senate.

Cost effectiveness analysis must be used carefully and as part of a comprehensive evaluation of the value a treatment, such as highly effective modulators, provide to people living with cystic fibrosis.

The Institute for Clinical and Economic Review (ICER) developed an assessment of the comparative clinical effectiveness and value of cystic fibrosis therapies. The Foundation provided input to help inform this process.

Sr. Vice President for Policy and Community Affairs Mary Dwight reflects on the passage of the Ensuring Access to Clinical Trials Act (EACT) and what it means for the community.

Twelve patient/consumer groups urge senate to reject the bill.

Responding to the Trump administration's recent decision to freeze risk adjustment payments, the Cystic Fibrosis Foundation joined 13 other nonpartisan patient groups to voice disappointment in the latest administrative efforts to undermine adequate and affordable health care for people with pre-existing conditions. 

Today, the U.S. Senate released its version of the health care reform bill, titled the Better Care Reconciliation Act, and in response, the Cystic Fibrosis Foundation affirmed its opposition to the legislation.

March on the Hill brings a mix of new and familiar faces to Capitol Hill every year. The connections and stories that our advocates share with their elected officials are making lasting impressions that impact the entire CF community. And as this event has grown, so too has the cystic fibrosis story.

Last month, Senator Chuck Grassley (R-Iowa) and I partnered to create the Cystic Fibrosis Caucus in the U.S. Senate. We are working toward a day when CF stands for “Cured Forever.”

A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.