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Q+A: Helping People With CF Access Treatments and Care

Mary Dwight
Vice President of Governmental Affairs

The CF Foundation's drug discovery and development pipeline has yielded several important therapies to treat CF, and many more promising compounds are currently in development. At the same time, a growing number of people with CF are struggling to afford essential treatment and care.

To better understand the financial challenges of individuals with CF and their families, the Foundation conducted a survey last year. One significant finding was the growing problem of underinsurance for people with CF. While 95 percent of people with CF have health insurance, an increasing number find that their coverage is not adequate to afford the therapies and care they need. Average out-of-pocket healthcare costs rose 20 percent from 2006 to 2007. Of the 394 participants surveyed, 21 percent said they have missed doses or taken less than the prescribed amount to reduce costs. Additionally, 13 percent of people reported delaying or skipping medical care because of financial concerns.

To help ensure that people with CF have access to quality care and essential CF medications, the Foundation has initiated efforts on several fronts. Mary Dwight, vice president of governmental affairs, and Dan Klein, vice president of Cystic Fibrosis Services, talked with Commitment about these efforts.

What steps has the Foundation's Public Policy team taken to increase access to treatment and care for people with CF?

Mary Dwight:  Right now, we are working to increase awareness of CF on Capitol Hill so that the health care needs of people with the disease are strongly represented in public policy decisions. The Foundation established the Congressional Cystic Fibrosis Caucus in 2006 with this goal in mind. With 127 members, the CF Caucus has become one of the largest congressional caucuses. The Foundation works with the CF Caucus to  promote public policies that increase access to treatment and specialized care for people with CF.

Off the Hill, we are working with the U.S. Food and Drug Administration to identify ways to expand access to investigational CF drugs prior to their approval. The Foundation also advocates for expanded coverage of approved CF therapies through the Centers for Medicare and Medicaid Services.

How can volunteers make a difference in this issue?

Mary Dwight: Volunteers can help increase awareness of CF and inspire action simply by telling their stories. Personal stories about what it is like to have CF or the challenges a family faces in affording CF treatment and care can be a powerful advocacy tool. Even a brief phone call, letter or visit to your member of Congress can make a big difference. A complete Advocacy Toolkit, including step-by-step instructions on how to contact your member of Congress, is available at

How will the Foundation's Public Policy team help to increase access to new therapies for people with CF in the future?

Mary Dwight:  The 111th Congress, which begins in 2009, will most likely initiate far-reaching health care reform deliberations.  We are working to ensure the needs of individuals with CF are articulated right from the beginning of this policy debate. Overall, the Foundation and its supporters will continue to expand the Congressional CF Caucus and inform key decision-makers about the healthcare challenges of people with the disease.

Dan Klein
Vice President of CF Services Pharmacy

What services does Cystic Fibrosis Services Pharmacy provide to CF patients and families?

Dan Klein: Aside from functioning as a full-service pharmacy for people with CF, CF Services offers a number of support services, including patient advocacy, assistance with health insurance and reimbursement. CF Services often works directly with patients who need help with complex insurance issues – from selecting a policy that meets their needs to filing claims. CF Services also works with insurance providers on behalf of patients to advocate for coverage for CF medications.

How does CF Services help people with CF who have no health insurance?

Dan Klein: CF Services assists people with CF who are uninsured by providing referrals to a number of drug manufacturer-sponsored assistance programs, which help uninsured patients obtain essential medications. Patients who experience temporary lapses in insurance coverage can apply for emergency assistance from CF Services.

How will CF Services help people with CF access new therapies in the future?

Dan Klein: As new therapies for CF become available, CF Services will continue to encourage drug manufactures to sponsor patient assistance programs that make cutting-edge treatment affordable for all people with the disease.

Having Trouble Affording CF Treatment and Care?

The CF Foundation supports and accredits a nationwide network of 113 care centers that provide high-quality, specialized care for those with the disease. Each center has a dedicated team of CF specialists including a social worker who may provide advice on financial assistance options.

CF Services, the Foundation's specialty pharmacy subsidiary, also provides several support services to the CF community, including patient advocacy, assistance with health insurance and reimbursement. CF Services is a leader in the administration of CF-specific patient assistance programs and has collaborated with several manufacturers to develop programs that assist the CF community.

For more information about CF Services, visit or call (800) 541-4959.