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The Pulmonary Fibrosis Foundation’s Public Policy Agenda
The mission of the Pulmonary Fibrosis Foundation (PFF) is to help find a cure for idiopathic pulmonary fibrosis (IPF), advocate for the pulmonary fibrosis (PF) community, promote disease awareness, and provide a compassionate environment for patients and their families.
Through the efforts of the PFF, patients, family members, caregivers, and healthcare providers are better informed about the disease and resources available to improve their quality of life. The Foundation is also dedicated to helping develop successful treatments and ultimately a cure for this deadly disease.
The federal government plays a vital role in the discovery and development of treatments for pulmonary fibrosis. The PFF urges Congress to join us in our efforts to extend and improve the lives of those affected by PF.
1) Advance PF Research and Development
The PFF supports the research efforts to find new effective treatments for PF. Progress is being made, but it is slow, with currently no FDA approved medications for PF. Support for federally funded research and drug discovery programs can ultimately help extend the lives and improve the quality of life of those afflicted with PF.
Strengthen the Food and Drug Administration (FDA) - The Food and Drug Administration (FDA) plays an essential role in drug development for fibrotic lung diseases, evaluating potential treatments and ensuring that they are safe and effective.
- Guarantee that Congress gives the Food and Drug Administration the necessary resources to expedite the evaluation of vital new PF drugs.
- Ensure that the FDA receives appropriate guidance from patients, providers, and researchers when reviewing applications for new rare disease treatments.
Support 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.
- Protect programs that help researchers translate promising scientific discoveries into potential treatments. This is an expensive and complex process.
- Ensure that elected officials provide the NIH with the funding needed to support essential research.
2) Promote Access to Care
Pulmonary fibrosis is an expensive disease. A recent healthcare utilization study estimates that the impact of PF on health care costs to be as much as $4.3-$6.7 billion per year. The prevalence of PF is expected to rise as our population ages. It is through improved management strategies and enhanced research programs that we may be able to ultimately deliver more cost-effective and economical healthcare.
Preserve Federal Health Care Provisions - Enable people with pulmonary fibrosis to access the care and treatment they need to live longer and improve their quality of life.
- Support access to quality health care that adheres to best practice guidelines developed by PF medical experts.
- Help pulmonary fibrosis patients access the medical care they need by reducing the unmanageable cost-share burden of this disease.
Protect Medicare and Medicaid - Medicare and Medicaid need protection in order to ensure that patients with pulmonary fibrosis have access to the specialized quality care and treatments they need.
- While states should have latitude to craft policies that best serve their populations, the federal government should continue to provide guidance and benchmarks to assist states in effectively managing the health needs of people with rare, chronic diseases.
The Pulmonary Fibrosis Foundation opposes efforts to cut funding from Medicare and Medicaid that could reduce the quality of care provided to beneficiaries, or change eligibility requirements, which could leave people who rely on these programs without coverage or ability to pay.
3) Raise PF Awareness
Finding adequate treatments for pulmonary fibrosis has been slow. With the completion of several clinical trials and new trials underway, PF patients and their families have hope. The need for additional scientific research and clinical trials is critically important. The lives of people with PF are cut far too short. We urgently need the public’s continued support to help extend and improve the lives of those afflicted with the PF.
How can you help?
- Communicate with members of Congress – every time you communicate with members of Congress it counts!
- Attend local “Town Hall Meetings” held by Members of Congress in your home district.
- Schedule a meeting with your Member of Congress - Advocacy Meeting Guide
- Spread the word through social media (Facebook, Twitter, etc.)
- Enlist your friends and family to contact their Members of Congress.
Advocate Toolkit - The items in our Advocate Toolkit will provide you with information needed to effectively advocate on behalf of pulmonary fibrosis related issues.
To send letters you can use our quick and easy Advocacy Tool or you can view a list of letters you can send to Congress using the PFF's online advocacy webtool
Share this information and recruit others to join our fight against pulmonary fibrosis. By working together we can make sure that pulmonary fibrosis has a place on the Congressional agenda.
Interested advocates can contact the PFF directly at 888.733.6741 or by email at firstname.lastname@example.org for further information.