The D.C. Dispatch
Your CFIDS Public Policy Report

Lobby Day attracts biggest group ever
On March 21, The CFIDS Association of America conducted its 11th annual Lobby Day in Washington, D.C. Seventy-two advocates, representing 15 states, met with more than 70 congressional offices, requesting increased research funding and attention to federal activities that will boost awareness and recognition for CFIDS.

This year’s group of advocates was the largest in Lobby Day history. Of particular note, nearly half the participants were healthy family members and/or friends of people with CFIDS (PWCs). Some participants came with an ill loved one; others came in place of a spouse, child, cousin or friend too ill to make the trip. For many years there were only a few healthy participants. This year, they helped carry the message of CFIDS to Capitol Hill, sharing a helpful perspective on how CFIDS affects families and the individual. The entire advocacy effort was strengthened by a group of this size and diverse composition.

Now the work of following up on commitments made by congressional staffers and members begins. Support for the Association’s requests was generally quite strong. Several staffers related personal knowledge of CFIDS through friends, family or co-workers, adding to their interest in helping push the requests through the lengthy appropriations (funding) process. Such contacts can prove invaluable in generating and sustaining support for increased research funding amid popular priorities for homeland security and bioterrorism.

The Association is deeply grateful for this year’s —and past years’ — Lobby Day participants. Their articulate delivery of the requests and credible portrayal of the impact of CFIDS leave a powerful impression on those who have the ability to significantly aid all PWCs.

Key requests
Participants in Lobby Day 2002 made four specific requests of their elected officials:

1)          The Department of Health and Human Services’ CFS Coordinating Committee (CFSCC) has not met in 16 months. The CFSCC has led efforts to monitor, improve and avoid duplication in government CFIDS programs. More than a year ago, DHHS announced its intention to make the CFSCC a full advisory committee, yet DHHS has still not approved the committee’s charter or announced a nomination process.

The CFIDS Association asks Members of Congress to direct the Department of Health and Human Services to: approve the CFS Advisory Committee Charter; publish a call for nominations; install members; and hold one meeting, all prior to the end of calendar year 2002.

2)          With $12.9 million restored to the CFIDS program after the 1995–98 diversion of funds, the U.S. Centers for Disease Control and Preven-tion (CDC) is branching into new and important areas of CFIDS research and medical education. To date, approximately half of the restored funds have been used, with only 18 months remaining in the payback period. We are concerned that the President’s proposed 6.5 percent cut in CDC’s budget, combined with the emphasis on homeland security research activities, may stall the agency’s important CFIDS work.

The CFIDS Association asks Congress to direct CDC to provide sufficient funding, including funds allocated through the “payback” program, to accelerate its CFIDS research plan to identify the causes, risk factors, diagnostic markers and natural history of CFIDS; to create a CFS patient registry; and to educate health care providers about the detection, diagnosis and management of CFS. We also ask that CDC extend the “payback” period by one year (through FY’04) so that the agency uses its funds most effectively, rather than risk careless spending to comply with the previous deadline.

3)          National Institutes of Health (NIH) funding for CFIDS research has declined since 1995, despite the fact that NIH has benefited from generous budget increases aimed toward doubling its budget.

The CFIDS Association requests that Congress direct NIH to target $10 million in grants to focus on promising areas of CFIDS research, such as efforts to understand the cause and progression of CFIDS, identify diagnostic markers and focus on pediatric CFIDS, by funding both multidisciplinary CFIDS research centers and investigator-initiated studies.

4)          CFIDS patients’ most crucial need is for effective, compassionate medical care. The Health Resources and Services Administration (HRSA) has supported demonstration grants to find new, more effective ways of health care delivery for emerging illnesses, although it has not yet done so for CFIDS.

The CFIDS Association requests that Congress direct HRSA to provide demonstration grants to develop model clinical centers with the goal of optimizing and delivering effective, multidisciplinary clinical care to persons with CFIDS.