Although the Centers for Disease Control (CDC) scandal has taken most of our attention lately, public policy work continues in other areas. For the latest on the CDC situation, see article in this issue.

Congress takes a break
 nce again, Congress has delayed passing its Labor/Health and Human Services Appropriations (Labor/HHS) Bill until after its August recess. This bill provides funding for all the federal government's health-related programs.

Prior to the break Rep. John Porter, chairman of the House Labor/HHS Appropriations Committee, indicated that the CFS funds misused by CDC would be restored by the House to CDC's CFS program through the appropriations bill. Sen. Arlen Specter, chairman of the Senate Labor/HHS Appropriations Committee, has not given us the same degree of assurance.

We continue to work closely with staff from the House and Senate to ensure that our recommendations for the government's CFIDS-related programs are included in the Fiscal Year 2000 bill. For more information about the Association's appropriations requests, visit the website or send a legal-sized SASE (with current first class postage) to the Association with a request for "FY2000 Approps."

SSA trains staff
The Social Security Administration (SSA) conducted training sessions to explain the new CFS ruling (SSR 99-2p) to its staff on  July 21 and 22. In total, 800 people across the country participated in the training session, which was broadcast by satellite to 150 SSA offices.

Training was led by Dr. Karen Ezrine of SSA and Dr. Paul Levine, a CFIDS specialist at George Washington University. Carolyn Kiefer of SSA's Office of Disability told The CFIDS Association that she expects the ruling and training will result in correct decisions being made by SSA earlier in the process.

For SSA staff who were unable   to participate in the training sessions, SSA included a 10-minute segment on CFIDS in its August 24 "Disability Hour," which recaps hot topics facing adjudicators, and many of the satellite sites videotaped the training session for replay later. SSA's POMS (the SSA "bible") has been revised to be consistent with the new ruling-the new information is in POMS DI 24517.075.

The ruling can be obtained from the Association's website or by sending a legal-sized SASE (with 77¢ postage) to The CFIDS Association with a request for "SSA Ruling."

In other SSA news, in August, SSA Commissioner Ken Apfel announced a plan to reduce the time it takes claimants to get a hearing for their claims. The Hearing Process Improvement (HPI) Plan will rely on administrative, data collection and staff training improvements to speed up the appeals process.

"It is our intent that, when fully implemented, HPI will reduce processing times from a projected level of 313 days in FY1999 to less than 200 days in FY2002," said Apfel.

NIAID prepares for CFS workshop
CFIDS Association Executive Director Kim Kenney has met with Dr. Carole Heilman, the new director of NIH's Division of Microbiology and Infectious Diseases at NIAID, and Dr. David Morens, the new NIAID CFS grants administrator, about the agency's upcoming "State of the Science" workshop (see page 11 for more on Heilman and Morens).

The workshop will be held on November 1 in conjunction with  the CFS Coordinating Committee (CFSCC) meeting on November 2. The format and topics have not been determined, although it appears that it will be open to the public, as will the CFSCC meeting. Both meetings will be held in Washington, D.C.

HRSA partnership continues
The Health Resources and Services Administration (HRSA) is helping the Association expand health care provider education about CFIDS. Information about the condition and The CFIDS Association was mailed by HRSA's Bureau of Primary Health Care to the nation's 1,000 Community and Migrant Health Centers on July 28. It can be difficult for lower-income patients, who more often use community health centers, to be properly diagnosed with CFIDS. Hopefully this educational effort will help educate providers in these clinic settings.

The Association hosted an exhibit about CFIDS at the National Area Health Education Centers (AHEC) meeting August 8-11. This was made possible through a grant from the Illinois AHEC/Chicago Health Consortium, which is working with the Association to develop a model curriculum for educating primary care providers about CFIDS.

On September 17, the Association will meet with top HRSA officials to discuss other means of educating providers.

HMO pullouts may affect PWCs
After a two year wait, Social Security Disability Insurance (SSDI) recipients are eligible for Medicare health insurance. Unfortunately for those currently covered, about 100 Health Management Organizations (HMOs) have decided to stop insuring Medicare recipients next year, citing insufficient reimbursement. This may leave many disabled people without adequate medical coverage.

HMOs that are pulling out of the Medicare program sent letters to affected plan participants in July. If you have questions or need advice about how the HMO withdrawal may affect you, call the Medicare Choices Helpline at 1-800-MEDICARE (800/633-4227).

VA codes fibromyalgia
The Veterans Administration (VA) finalized a diagnostic code and evaluation criteria for fibromyalgia in its Schedule for Rating Disabilities. The rule, published in the Federal Register on July 17, adopts an interim rule in use by VA since 1996.

The diagnostic code, 5025, defines fibromyalgia as "widespread musculoskeletal pain and tender points, with or without associated fatigue, sleep disturbances, stiffness, paresthesias, headache, irritable bowel symptoms, depression, anxiety, or Raynaud's-like symptoms." Please note that this is a VA-specific code, and does not affect Social Security, ICD or other medical coding systems.
 
Vicki Walker is Public Policy Coordinator for the CFIDS Association of America. She is in her seventh year of service to the Association.

Association helps win important disability case
A June 29 court decision in a long-term disability (LTD) case may have been positively influenced by The CFIDS Association’s advocacy efforts with the Department of Labor.

Joseph H. Friedrich, a person with CFIDS and multiple chemical sensitivities (MCS), won a landmark LTD case against his former employer, Intel Corporation. Intel tried to argue that Mr. Friedrich suffered from a psychiatric condition (rather than CFIDS or MCS), which would not be covered by its LTD plan.

Normally, LTD claimants who take their appeals to court are only allowed to present evidence that was reviewed by the plan’s claims administrator when it originally made its decision. Any new evidence that becomes available after the administrator’s review cannot be considered in court.

After hearing from our members about the problems they were having with the LTD claims rules, the Association sent recommendations for revising the LTD claims procedures to the Department of Labor in November 1997. One of the Association’s points was that litigants should be granted de novo review of their claims, which means they would be allowed to introduce new evidence in court.

What is so significant about the Friedrich case is that the Department of Labor backed the Association’s position, arguing in support of de novo review in the Friedrich case because it found that Intel’s decision to deny Friedrich’s claim was based on a conflict of interest.

The Court agreed with the Department of Labor, concluding, "‘Friedrich presented...evidence beyond the mere fact of the apparent conflict...to show that Intel’s self-interest caused a breach of its fiduciary obligations to him.’ The district court further determined that Intel failed to produce sufficient evidence to demonstrate the conflict of interest did not affect their decision to deny benefits." For a copy of Friedrich v. Intel Corporation and Intel Corporation Long-Term Disability Benefit Plan, 99 C.D.O.S. 5144 (6/29/99), send a SASE (with.33¢ postage) to the Association with a request for "Friedrich Case."

The CFIDS Association is pleased that our members’ concerns are being brought to the attention of the Courts by the Department of Labor in its legal briefs. Many thanks to the volunteers who have assisted us with this effort.