Advocacy and Public Policy

So, What is Advocacy and Why Should You Care?

National Policy

The Cystic Fibrosis Foundation is the world’s leader in the search for new treatments and a cure for cystic fibrosis.  Real progress is being made with a robust pipeline of potential therapies in various stages of development and testing. Support for federally funded research and drug review programs can help extend the lives of those with the disease and are the focus of the Cystic Fibrosis Foundation’s National Public Policy Agenda for 2013.

Strengthen the Food and Drug Administration (FDA)

The Food and Drug Administration (FDA) plays an essential role in CF drug development, evaluating potential treatments and ensuring that they are safe and effective.

  • Ensure that Congress gives the U.S. Food and Drug Administration the resources to swiftly review and approve vital new CF drugs.
  • Make certain that the FDA receives appropriate and adequate guidance from patients, providers and researchers when reviewing applications for new rare disease treatments.

Support the National Institutes of Health (NIH)

The National Institutes of Health (NIH), the nation’s medical research agency, performs and promotes the innovative research that helps translate basic scientific discoveries into the cures of tomorrow.

  • Promote and protect programs that help researchers translate exciting scientific discoveries into potential treatments, an expensive and complex process.
  • Ensure that elected officials provide the NIH with the funding needed to support essential research.

New York State Policy

On the heels of great success on the national level, the Greater New York Chapter is also leading the charge in advocacy on the state level.  New York State has programs that assist qualifying patients with cystic fibrosis and are critical to families who cannot afford the immense cost of CF treatment.

Support strong funding for the Adult Cystic Fibrosis Program in the 2013 budget

  • New York State’s Adult Cystic Fibrosis Assistance Program (ACFAP)  provides reimbursement for cystic fibrosis-related medical care, and/or insurance premiums for cystic fibrosis individuals aged 21 years and older. 

Support strong funding for Children with Special Health Needs

  • The Children with Special Health Care Needs Program seeks to improve the system of care for children with special health care needs from birth to 21 years of age and their families. The Program helps to shape public policy so families can get the best health care for their children.


To get involved, sign up at www.cff.org/GetInvolved/Advocate to learn more and receive action alerts.  Join us in our efforts to ask public officials to represent our interests, not just those groups with large lobbyists behind them.  The alert enables you to send a customizable message to your federal and state representatives expressing your views.  It’s easy to find out who your representatives are and takes all of 30 seconds to send.

“Roger and Lynn Stattel, CFF GNY Chapter Volunteers; US Representative Yvette Clarke of New York State’s 11th District; and, Melissa Shiffman, CFF GNY Volunteer and State Advocacy Chair.  Representative Clarke agreed to join the CF Caucus as a result of this meeting that was held in the summer of 2012.

Please contact Melissa Shiffman at cffgnyadvocacy@gmail.com or Trina Fontaine at kfontaine@cff.org or 914-993-1460 with any questions.