One of the best ways to build momentum for a Congressional hearing is to cultivate a relationship with your Representative and Senators, especially those on the committees listed in my earlier blog post.
Groups or individuals can do this by asking for a meeting at their Representative's or Senator's local in-state or district office. Try calling and asking for the staff person in charge of health for such a meeting.
Explain that you have a disease that was investigated by the CDC in the mid-1980s but that federal research into it has been derailed from the original cohort and subsequent pandemic.
Bring some information with you to the meeting that summarizes the situation but isn't overwhelming. Many members of Congress know little or nothing about our disease, or are misinformed. Start making them aware of the politics involved by handing out copies of something like Hillary Johnson's Op-Ed piece in the New York Times:
After the initial contact, it's very important to continue to call, email, and visit and provide more information.
The idea is to keep up a sustained campaign of engagement, even if it is simply a semi-monthly email to the health staffer.
For those who aren't able to get out, I'd suggest calling and getting the name of Washington, DC legislative assistant in charge of health matters. Then keep in touch by email as outlined above.