During the last week of February, Danielle Tate, PT, DPT headed to Washington, DC to represent the Vestibular Disorders Association's Legislative Advocacy Committee and those suffering from Vestibular Dysfunction for Rare Disease Week on Capitol Hill 2020.
What is Legislative Advocacy?
Simply put, it includes the efforts put into influencing legislation. The most common way of achieving this is contacting a legislator, sharing views on an issue, and asking them to vote a specific way on a bill that pertains to your specific interest.
Why does Vestibular Disorders Association (VeDA) need a Legislative Advocacy Committee? VeDA's mission is to support and empower vestibular patients on their journey back to balance. One way we can support patients is by making sure we lobby for legislation that makes getting a diagnosis and treatment more accessible and affordable.
Rare Disease Week on Capitol Hill brings the rare disease community together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. The week was packed full of events and was attended by more than 800 advocates.
Monday kicked off at the FDA with a public meeting addressing the FDA’s support of the future of Rare Disease product development. The goal of this meeting was to open a dialogue between the FDA and the public to obtain stakeholder’s perspectives on challenges and solutions in rare disease product development. Tuesday consisted of a documentary screening of “Tin Soldiers”, which is a documentary about those living with Fibrodysplasia Ossificans Progressiva (FOP). This film hopes to spark a global search for other patients suffering from, but not yet diagnosed with FOP. Getting a rare disease diagnosis, which includes a variety of vestibular disorders, can be extremely hard and frustrating. Especially in areas with limited resources. Delays in diagnosis is common among vestibular patients considering how difficult it can be to describe symptoms that aren’t evident to the eye. There’s a saying: “When you hear hoof beats, think horses not zebras”. This may be true at times; however, Zebras do exist! That’s why the zebra is a great mascot to represent rare disease.
Wednesday, advocates attended the Legislative Conference to learn about the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build a relationship with Members of Congress and staff. The conference was crafted to educate advocates with little to no political experience and provide useful updates to those with a history of political action. This was in preparation for meetings all day with representatives on Thursday on the Hill. Danielle, as an advocate from South Carolina, had meetings with Senator Tim Scott, Senator Lindsey Graham, Rep. Joe Wilson, Rep. Joe Cunningham, and Rep. Jeff Duncan. In these meetings, emphasis was placed on asking representatives to support the increase in fund appropriations to the NIH and FDA. These funds will be specifically utilized for natural history studies, as well as to establish a Center of Excellence within the FDA for Rare Diseases. These efforts are to increase the understanding about diseases that we need to know more about, and to bring together all efforts under one roof for creating treatment options and protocols for rare diseases.
Rare Disease Week closed out with Rare Disease Day at NIH which was to raise awareness about rare diseases, the people they affect, and the NIH research collaborations under way to address scientific challenges and to advance new treatments. The knowledge taken away from this conference will continue to fuel VeDA’s Legislative Advocacy efforts to support the vestibular disorders community.