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Fall 2003 

DC Dispatch
Your 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 thought about.

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 lobbyday04@cfids.org or call the Resource Line (704-365-2343) and ask to be added to our Lobby Day mailing list.

Appropriations Update
Health funding 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 lobbying

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 Sept. 26.

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 suffer.