I signed up to participate in the Foundation's RLS Advocacy program. The folks at HMCW (Health and Medicine Counsel of Washington) in DC provided me with instructions about how to contact my various Congressional representatives's local offices to set up a meeting as well as documents that I could use during the meeting.
So far, I have met with the local health staff members for one of my senators and my representative. Both meetings went very well and were easy to do after reading HMCW guidance document. Each meeting went for about an hour and both staffers were very interested in learning about RLS. Both of them also seemed to be very knowledgeable about opioids in general, but were also understanding about how current regulations are making it increasingly difficult. During the discussions, I haven't been holding anything back when I explain that if things get worse and I lose access to methadone, then my options are very limited and very bad. They seem surprised when I said that one option is heroin, but once they think about it they understood the point. I also pointed out that suicide also becomes a very real option, which appears to underscore our dire situation. Both asked if suicides occur within the RLS community, which they do. Both said that they were going to immediately pass the info that I gave them to their legislative contacts in DC.
So, if you haven't signed up to participate in this program, please do ASAP. You do not need to be a member of the Foundation to do this. To find out how, go to https://www.rls.org/get-involved/advocacy