Lobby Day 2006
Big Turn Out. Solid Progress.
Close to 80 people made their way to
Capitol Hill last month for the CFIDS Association’s 14th Lobby Day
8-9—a record crowd for this annual event. Hailing from California to Maine and
most points in between, these dedicated citizens—
with CFS and some there to advocate on behalf of friends, family
and patients—took their message directly to lawmakers in more than 80 face-to-face
Armed with a packet of
supporting information, Lobby Day advocates shared their CFS experiences with
lawmakers and made three specific requests of each senator and
Sign on to a
letter asking Secretary Leavitt to renew the charter
the Health and
Human Services (HHS) Chronic Fatigue Syndrome Advisory Committee (CFSAC) and
to respond to the committee’s earlier recommendations.
Contact the Chair
and Ranking Minority Leader of the Labor/HHS Appropriations Subcommittee and tell them to restore the
Centers for Disease Control and Prevention’s CFS research allocation to the
fiscal year 2005 level of $9 million.
Contact the Chair and Ranking Minority Leader of the House
Commerce Committee or Senate HELP Committee to support National Institutes for
Health (NIH) transparency to ascertain the number of CFS grant applications
received and funded in fiscal years 2004 and 2005.
But first, participants received a day of training from the staff of
The Sheridan Group, an organization with extensive health advocacy experience and
a long history of working passionately to improve CFS
public policy. Lobby Day participants—grouped into
state/regional delegations—learned the congressional committees involved in shaping CFS policy and what
expect in meetings with lawmakers and their staffers. Sheridan Group President Tom
Sheridan not only provided the background necessary to understand and discuss each
of the three requests, he empowered advocates with his ardent endorsement of the
difference such meetings can make.
Lobby day participants
spend a day in training by The Sheridan Group.
After a series of role
playing and other exercises to increase comfort levels and instill confidence,
meeting schedules were distributed and advocates rehearsed meeting “scripts” and
made arrangements about where and when to meet the next morning.
When the big day
arrived, the sun was shining and spirits were high as advocates scurried to
their first meetings. Throughout the day, delegations crisscrossed the streets
between the Senate and House office buildings, meeting face-to-face with
lawmakers, telling their stories and asking for action.
When everyone gathered
on the steps of the capitol building for a group photo, it was clear that progress
was already occurring. Several delegations told of positive meetings and
commitments to help with one or more of the requests. Participants felt empowered
and validated by the experience. Said one participant, who has only recently
started talking about the illness, “As I tell my story, I feel like I’m making a
difference. And that makes a difference in me, as well.”
Proud lobby day
participants on the steps of the capitol.
with scores of meetings behind them, the now-experienced citizen lobbyists
gathered at Tom Sheridan’s house to celebrate and recuperate from such an eventful
day. Though many were exhausted, the stories continued to flow. Then, slowly,
people drifted off to return home, energized about fighting for CFS and making
plans for how to follow up and continue to push for results.
And results are taking place. As Lobby Day participants,
the Sheridan Group and Association staff follow up on each meeting and work to
nail down commitments to the three primary requests, several actions have
already occurred. Sen. Ron Wyden of
Oregon and Representative
Jim Gerlach of
each sent their own letters to Secretary for Health Leavitt, asking him to renew the
CFS Advisory Committee’s charter and take action on
Work continues to
finalize the “sign on” letters from the House and Senate, and reports indicate
that other lawmakers have contacted committee leaders about the CDC funding and
NIH transparency requests. But one thing is certain: the Association and the
Sheridan Group will continue to tend the fertile soil that this Lobby Day has
Virtual Lobby Day Expands Access
For the third year running,
Virtual Lobby Day has enabled people who can’t make it to Lobby Day to
express their concerns and strengthen the requests of those who take part in the
“live” event. Conducted through our Grassroots Action Center (GAC), this year
over 2,500 messages were sent to lawmakers, the Secretary for Health and local
And it’s not too late to participate!
Visit http://capwiz.com/cfids/home/ to see how to be a
advocate from the comfort of your own home.
We’ll use the GAC to alert people to opportunities to strengthen awareness efforts,
so sign up for the listserv at http://capwiz.com/cfids/mlm/signup/
to receive timely messages when your voice can make a difference!