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FSR strives to be advocates for all of our patients. One way we achieve this goal is through our work with the American Thoracic Society’s (ATS) Public Advisory Roundtable (PAR). PAR is a select group of pulmonary disease patient representative who work together to make sure patient voices are included in all phases of research, clinical application, and policy. Throughout the year PAR offers multiple chances for these representatives to work together.

ATS Hill Day 2018

In early October FSR’s Executive Director, Ginger Spitzer, was able to travel to Washington D.C with PAR for ATS Hill Day. Hill Day is when PAR representatives visit Congress members to discuss patient needs.

Before their visit to D.C., ATS works with PAR to decide what are the most pressing needs of patients. PAR then creates key talking points to discuss with each Congress member. This year’s focus was increased research funding, patient supplemental oxygen access and other causes.

PAR representative and clinicians from 20 states were able to meet with 60 Congressional members to advocate for these causes. Ginger noted that the experience opened her eyes to how complex the government is.

One of the complexities that PAR representatives learned about while in D.C. was how difficult it is to pass wide reaching legislation. For example, many Congress members would like to support a bill that supports better oxygen access. Unfortunately, asks like this will often be combined with many other requests inside of one bill. Even if a Congress member agrees that pulmonary patients need better access to oxygen, they have to make sure they agree with the other items in the bill.

This means, many times bills that could be beneficial to patients end up not being supported. While speaking with Congress members, Ginger realized how frustrating it can be to have a Congress member say they support your cause but not be assured that they would vote for the bill because of other items bundled in it.

Programs like ATS Hill Day ensure that patients have clinicians and representative’s voices supporting them. Fighting for bills that result in better resources for patients is one of FSR’s priorities. Ginger stated, “Hill Day is very valuable in making sure patients have their voice represented and heard at the level where change can take place through policy.”

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