Become an Advocate
Become a PFF Advocate
Members of the PFF Advocates regularly contact their members of Congress and their staffs and other officials to advocate for issues of importance to the community. As a member of the PFF Advocates, you will receive alerts when there is an important advocacy issue. The PFF will provide an easy online platform for reaching out to your members of Congress. You will also receive notification of the PFF’s annual Hill Day and of any other PFF advocacy events. Use this form to join the PFF Advocates!
Learn More about the PFF's Policy Priorities
Sign on to ask Congress to protect access to oxygen
Please note: This petition is only for individuals who use supplemental oxygen or used supplemental oxygen before a lung transplant, their caregivers, and their loved ones, who live in the United States.
The Pulmonary Fibrosis Foundation, the American Lung Association, the American Thoracic Society, the American Association for Respiratory Care, and many other organizations have come together to urge Congress and the Centers for Medicare and Medicaid Services to change their policies to ensure anyone who requires supplemental oxygen can access the most appropriate type of oxygen for their needs. Below are the consensus principles, which will form the basis of our legislative reform efforts. We invite you to sign onto this petition in support of the Four Pillars for Oxygen Reform.
Only your first name, last initial, city and state will be displayed in the public facing petition. Example: Jane S. from City, State
The undersigned individuals who require supplemental oxygen and their loved ones call for Congress to take action to ensure anyone who needs supplemental oxygen has appropriate access.
Four Pillars for Oxygen Reform
1. Ensure supplemental oxygen is patient-centric:
- "Home oxygen" to "supplemental oxygen" to ensure people requiring oxygen can live full lives outside their primary residence
- Create a patients bill of rights to ensure care is focused on patient needs
2. Ensure access to liquid oxygen for patients for whom it is medically necessary
3. Create a statutory service element to provide adequate reimbursement for respiratory therapists to ensure patients have access to their expertise
4. To ensure predictable and adequate reimbursement and to protect against fraud and abuse, establish national standardized documentation requirements that rely upon a template rather than prescriber medical records to support claims for supplemental oxygen suppliers
Five Steps to Meeting with Your Members of CongressYou can meet with your members of Congress and/or their staffs to advocate for issues that are important to pulmonary fibrosis patients. Here are five steps to schedule and conduct a visit.
- Find the contact information for your U.S. Representative and U.S. Senators using the “Find Your Member of Congress” form on this page (below).
- Contact your official’s office to request a meeting. During the COVID-19 pandemic, meetings will be virtual for your health and the health of congressional staff. The office may schedule you to meet with your member of Congress or with a member of their health staff. Be prepared to follow up – you may need to call a couple of times and be flexible with the date of your meeting, but persistence will pay off.
- Before the meeting, email Kate Gates to request the current “policy asks” for congressional offices and any one page “leave behinds” that you can email to your legislator or their health staff.
- During the meeting, remember to identify yourself as someone who lives in the official’s district or state and to share your story. Your personal connection is the most important reason for your advocacy! Limit your story to 1 – 2 minutes, the length of an “elevator pitch.”
- Within 24 hours of your meeting, send an email to thank them for their time. This is crucial to build relationships. Then plan when your next visit will be.
Find Your Members of Congress
Connecting with your elected officials is the key to effecting legislative change. Enter your information to find out who your members of Congress are. Your voice is important. Connect with your government officials so that you are heard!