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CFIDS Public Policy Report
It was the Lobby Day that wasn’t. Perhaps the Lobby Day that
wasn’t meant to be.
In January, with war looming in Iraq and heightened warnings
about possible terrorist action, we grew increasingly concerned that it might be
difficult to attract participants to the Association’s 12th Lobby Day, planned
for March 19–20. The state of "high alert" might also have impacted lawmakers’
interest in other, less immediate, issues. After much consideration, the
decision was made to reschedule the event for Sept.17–18 — strategically
important because funding decisions for federal programs are generally completed
on Sept. 30, the end of the government’s fiscal year.
We considered numerous factors when the decision to postpone
was made. But the one authority we neglected to consult was the Farmer’s
Almanac. That the new date fell in hurricane season wasn’t something we even
As international tensions and domestic fears eased somewhat,
Lobby Day registrations began picking up steam. By the sign-up deadline we had a
record number of participants — more than 100 people with CFIDS (PWCs), family
and concerned friends. Media coverage, sparked by PWC Laura Hillenbrand’s
success as the author of the book-to-movie story of race horse Seabiscuit,
helped build excitement for the annual advocacy event.
In September, The Sheridan Group went to work requesting and
making appointments for the registrants. Training materials, information packets
and logistical plans were prepared. Early reports of a Class 5 hurricane
building in the Atlantic were a distant concern. But by Sept. 13 we started
hearing from advocates worried that Isabel’s predicted path through the
Washington, D.C., area might affect travel and could even jeopardize the entire
event. Still, it seemed unlikely that the storm would have adequate strength to
disrupt a city 100 miles from the ocean. We chose to stick to the plan, scaling
numbers back to reflect the cancellations already received.
When training began on Wednesday, Sept. 17, the group was down
to half its original size. Those who came were enthusiastic, eager to share
their stories and master the congressional requests we’d be making the next day.
Weather and cancellation "intelligence" reports filtered into the room, sparking
discussion of contingency plans should the government decide to close.
Although tempered with the kind of giddy excitement
Southerners feel on a rare snow day, disappointment swept through the room as
the group broke for the evening. Those who had traveled long distances and
temporarily overcome illness to get there were determined to make the best of
it, no matter what.
By 7 p.m. the decision by the rapid transit authority to close
the Metro led quickly to an announcement that the federal government would be
closed all day Thursday. We worked to contact the people who had attended
training and worked with hotel staff to secure a meeting room for the next day.
On Thursday morning a group of 25 advocates gathered to write
personal notes to Congressional staffers we would have been meeting with under
normal circumstances. Some of us chose to use hotel stationary, underscoring the
disappointment of having come to D.C. then lost the opportunity to meet with our
elected representatives. One lucky couple from Tennessee found by phone that one
dedicated staff member they were scheduled to meet with had gone to work despite
the storm, so they headed to the Hill and had a productive meeting with Senator
Bill rist’s staffer. A casual luncheon at lobbyist Tom Sheridan’s home offered
more time to socialize and share experiences on a wide range of issues.
Those who participated in the truncated events left feeling
cheated by the storm, but positive about the relationships they made or renewed.
All departed D.C. committed to contacting their members of Congress at home in
district offices and to building relationships with local staff to complement
The Sheridan Group’s efforts to follow up on cancelled Lobby Day meetings. Most
planned to return in 2004 to try again.
Next year the cicadas are expected to infest Washington, D.C.,
an every-17-year natural phenomenon. When planning our 13th lobby day we will
consult the Farmer’s Almanac — and maybe a psychic, too.
Join in the Virtual Lobby Day!
We need you to write to your members of Congress about CFIDS
and what the federal government must do to speed progress. Ideas for how to
help, plus Lobby Day materials including talking points and Congressional
requests, are available by calling the Resource Line at 704-365-2343 and ask to
have a packet mailed to you.
2004 Lobby Day Plans
We’ll soon finalize
the date and other details for our next Lobby Day. We are considering several
dates and venues for early spring. Let us know now if you’d like to receive
advance information. Send a message to
firstname.lastname@example.org or call the Resource
Line (704-365-2343) and ask to be added to our Lobby Day mailing list.
decisions remain tied up in Congress, stalled by squabbling over bigger issues
such as predicted revenue levels and aid to Iraq. We’ll continue to monitor the
health appropriations bill to ensure that CFIDS-related language and directives
clear each step of the process. It’s not too late to write or call your elected
officials — ask them to support increased funding for CFIDS research. Detailed
requests are available at www.cfids.org.
Leah Moseley is Public Relations Coordinator for The CFIDS
Association of America.
Washout doesn’t stop Steins from
For Jonathan Stein, the disappointing decision by the
government to close federal offices on Sept. 18 was not enough to douse his
commitment to meet with Sen. Arlen Specter (R-Pa.) to share his daughter’s story
and ask for greater federal resources for CFIDS.
Stein, a Philadelphia legal services attorney, is no stranger
to advocacy. He passionately fights bureaucracy, red tape and disinterest every
day on his clients’ behalf. But because his adult daughter Rachel has been
totally disabled by CFIDS for four years, his determination was even greater.
Jonathan began calling and e-mailing Senator Specter’s offices
in Washington, D.C. and Philadelphia soon after he returned home from Lobby Day.
Using materials he obtained at Lobby Day training, he emphasized the magnitude
of CFIDS and the need for increased federal funding for CFIDS research. Through
persistent follow-up, he and Rachel were invited to meet with Sen. Specter,
chairman of the Senate Health and Human Services Appropriations Subcommittee, on
The meeting was brief but extremely productive. Rachel, a
graduate of Yale and Princeton, described the sudden onset of her illness while
she was working as a consultant for KPMG. The two gave Specter updated
prevalence figures and spoke about the personal and collective economic toll the
illness exacts. They asked him to provide leadership on the issue and to insist
upon increased spending by the National Institutes of Health (NIH) on CFIDS.
They impressed him and earned his commitment to follow up on these requests.
Since the meeting, Sen. Specter’s staff has contacted The
Sheridan Group to obtain more detailed information. As appropriators meet to
determine federal health spending this fall, the Steins’ requests will be
reflected among Chairman Specter’s priorities. His staff will seek information
from NIH about current spending levels and the research projects those funds
support. And Rachel and her dad will feel a sense of encouragement and
empowerment in knowing their efforts made a difference for all those who