Lobby Day Advocates Put a Face on CFIDS
On May 12, 2005, 58
advocates headed to Capitol Hill to inform members of Congress and their
staffs about CFIDS and to ask for their support. The event marked the CFIDS
Association’s 13th Lobby Day and took place on International CFIDS
Awareness Day.
Armed with plenty of supporting information, advocates made
four requests of each of the
80 congressional offices they visited:
-
Write a letter to NIH Director Elias
Zerhouni, MD and tell him to issue a “Request
for Applications” (RFA) for CFS.
-
Contact the Chair and Ranking Minority Leader of the
HouseCommerce Committee or Senate HELP
Committee and ask them
to support creation of an office of trans-NIH initiatives.
-
Sign on to a letter to HHS Secretary Leavitt that seeks
immediate implementation of
11 recommendations from
the Chronic Fatigue Syndrome Advisory
Committee (CFSAC). -
Contact the Chair and Ranking
Minority Leader of the Labor/HHS Appropriations Subcommittee and tell them to
set the Centers for Disease Control and Prevention (CDC) FY06 baseline at $8.9
million.
These “asks,” and the rationale for them, were explained to
advocates at the half-day training session on May 11. Members of The Sheridan
Group’s staff presented tutorials on the workings of the Congressional
committees targeted for Lobby Day meetings; they also described what to expect
in the meetings and how to navigate Capitol Hill amid construction and
heightened security. Role plays by staff and then advocates helped prepare and
instill confidence in first-time and veteran participants alike. Tom Sheridan’s
infectious enthusiasm came through during his talk about the power of grassroots
advocacy and events like lobby day, as did his passion for our cause.
At the end of the session, meeting schedules were distributed
and advocates met in their state/regional delegations. They rehearsed meeting
“scripts” and made arrangements about where and when to meet for their first
meeting. Canvas bags sporting the Association’s logo and “Working to conquer
chronic fatigue and immune dysfunction syndrome” were packed with
information-rich folders to give out at each meeting, and advocates headed to
dinner, to rest or to cram.
Fortunately, on May 12 the weather cooperated (2003’s Lobby
Day was sabotaged when Hurricane Isabel closed all government offices) and private
pilots stayed out of restricted air space over Washington, D.C. (The Capitol and
the White House had been evacuated the day before when a private plane flew over
Capitol Hill and temporarily raised the threat alert.) Throughout the day,
advocates encountered one another in hallways, on sidewalks and in cafeterias,
taking quick opportunities to share experiences. Most of the group spent the
morning meeting with Senate offices, crossing to the House side of Capitol Hill
for the afternoon. A group photo on the steps of the Capitol Building taken
during the noon hour only permitted about half the group to participate; others
were in meetings or had opted for morning-only or afternoon-only schedules.
That evening, Tom Sheridan hosted participants at a reception
at his home. Although most group members were exhausted from the long day, there
was a celebratory mood, lots of animated chatter about the meetings and new
friendships formed over the course of what some called “a life-changing event.”
There were true “converts” – those who came to training somewhat skeptical about
the process or unsure of their own ability to effectively advocate for
themselves or a loved one, 36 hours later craving more meetings and vowing to
return home and spread the message that one person (or 58 people) can
make a difference. One participant, Janet Helin
of Plainsboro, NJ,
shared her perspective in two essays published online at
http://www.livejournal.com/users/crickster92/810.html
and
http://www.jwrites.com/summer05.htm.
The process of recording the commitments made by staff and
Congressmen and Congresswomen during meetings, following up on information
requests and suggestions has occupied many hours on the part of Sheridan Group
and Association staff, as well as advocates themselves. The primary follow-up
task has been getting members of Congress to sign on to the letter addressed to
Secretary for Health
Leavitt; this process has extended due attention focused on the high-profile
battles in Congress over judicial appointees, filibuster rules and stem cell
research, followed by a two-week Memorial Day recess. Congress returns this week
and efforts to secure signers will intensify.
Participant and Association
Board Member Lynn Royster
persuaded her congressman, Rep. Danny Davis (D-IL), to express his support for
CFIDS and the effects it has had on her son, Patrick, and hundreds of thousands
of other persons with CFIDS. Rep. Davis read a statement about CFIDS into the
official record from the floor of the House of Representatives on May 24. His
statement and other Lobby Day outcomes will be posted to our website (
www.cfids.org). The summer issue of the
CFIDS Chronicle will feature advocate interviews and progress updates,
too.
Be part of next year’s group! To receive advance notice of
plans for Lobby Day 2006, please send your name and mailing address to
lobbyday@cfids.org.
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