The LDA, LymeNet, CanLyme, etc., they all talk about this, because it's a big deal! It is not being ignored, don't worry.
Here's the letter Pat Smith (LDA president) wrote:
(www.LymeDiseaseAssociation.org)
Update: Today, history was made and patients’ plight was revealed. By working together at grass roots level & focusing on what would best serve the entire community, our voices have finally been heard in the most prestigious Congressional arena.