Letter to TBDWG Requesting Accommodations
June 12, 2019
Dear Mr. James Berger & TBDWG Members and Staff,
As a volunteer involved in Lyme and tick borne disease education and support for several decades, I would appreciate being able to participate in the federal TBDWG proceedings. Being one of only three people to submit tick borne disease related white papers to Congress for the 21st Century Cures Act that helped create this group, I am very interested in seeing this project through and also having meaningful input along the way.
If I could make the trip to Washington DC to share my comments with the working group, which I am unable to do because of my multiple Lyme related disabilities, it would cost approximately $1,200 plus meals, tips, and transportation fees to attend. That is more income than I receive for three months on disability, making the trip to speak to the group both physically and financially impossible.
Unfortunately, I am not alone in dealing with this situation. Many sick patients across the country also can not participate due to the severity of their TBD related illnesses, their disabilities and/or the costs involved. Some are also visually and cognitively impaired and have difficulty trying to submit written testimony. We also do not know if working group members have actually received our written comments and considered them, as they seem to disappear once they are submitted.
The current policy to not allow people to speak remotely is unfair to all interested parties, especially the disabled. It places an undue burden on those who are not in the DC area and it essentially silences voices across the country. I write to you today and request that you act immediately to accommodate those who are unable to attend in person for whatever reason so they may have a chance to participate in this process.
Thank you very much for your consideration. I will be awaiting your reply.
Sincerely,
Lucy Barnes