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Spring 2003 

Chronicle Q & A
Why Advocacy Matters

Tom Sheridan is the point man for CFIDS in Washington. His lobby firm, The Sheridan Group, represents the interests of the entire community in all the corridors of the federal government, from Capitol Hill to the National Institutes of Health.

In this interview, Sheridan talks about the victories the CFIDS lobby has won over the years — and the tremendous challenges that lie ahead.

Q.        Why does advocacy matter?

A.        I see advocacy as a way to solve problems. It’s how we, as citizens, make sure laws and policies are responsive to the issues and problems that most concern us. To me, it’s a vital element of democracy. We have a certain responsibility to make our voices heard, to express our opinions and to offer solutions to those we’ve elected to represent us.

There are so many interests competing for attention in Washington . Without a strong advocacy program, the CFIDS community would struggle to win — and maintain — the funding, recognition and policy changes we’re seeking.

Q.        How did you become involved in advocacy?

A.        I entered by a rather unconventional route. Most of my colleagues have practiced law or worked on Capitol Hill in one capacity or another. My Master’s degree is in social work. My first act of advocacy occurred when I was working to establish a home for developmentally disabled adults in a neighborhood that really didn’t want such a place located there.

I learned about political organizing while working for Walter Mondale on his 1984 presidential campaign. And I gained valuable experience — and tough skin — when leading public policy efforts for AIDS Action Council in the late 1980s. During that time

I helped craft legislation, the Ryan White CARE Act, which has provided over $2 billion in services to people with HIV/AIDS.

Now, the firm I started in my kitchen 11 years ago represents numerous non-profit health and welfare organizations and socially conscious corporations. The CFIDS Association was one of my first clients, so the work we’ve done together to put this issue on the political “map” is very meaningful to me. I’ve found that my strengths are best put to work in situations where I am fighting for the underdog.

I’m told that I have a little pit bull in me too.

Q.        What’s the top priority for the CFIDS lobby in Washington?

A.        Remaining relevant. The Centers for Disease Control and Prevention (CDC) scandal that broke in 1998, when Dr. William Reeves presented evidence that CDC had lied to Congress about the use of CFIDS funds, was a very powerful event. CFIDS was suddenly in Washington Post headlines, the subject of several Congressional hearings, and at the top of the agenda for the director of a major public health institution. We used that notoriety to make very important gains for CFIDS research, through restoring nearly $13 million in funds to the CFIDS program at CDC, and for deepening the Association’s credibility on the Hill.

We proved that we were vigilant watchdogs over how federal CFIDS funds were being used. Members of Congress and their staff people developed tremendous confidence in the information we regularly provided about how the federal agencies were responding to CFIDS.

Now, with all the distractions of war, bioterrorism and SARS, on top of the usual parade of causes and initiatives, we must work even harder to make sure CFIDS doesn’t fade from memory. We have to constantly remind Congress of the magnitude of CFIDS —how many people have it, how it impacts the economy, what individuals and our society lose through the disability it causes. We have to be able to translate those “costs” into policy that makes sense. We have to be tenacious. Most of all, we have to follow through on every commitment we make and every one we get. In advocacy, lawmakers count on the lazy advocate. We can’t let them off the hook by not doing what we say we will.

Q.        What is the most important achievement made through CFIDS advocacy?

A.        Of course, helping to reveal the misuse of CFS funds at CDC, and then getting those funds restored, was an enormous accomplishment. Even more important was being involved in determining how that money — $12.9 million — has been used. It would take a lot of bake sales and car washes to raise that sum for research funds. It’s a perfect example of how effective advocacy can result in better, and more, research.

However, in my personal opinion, the work we did to get the Social Security Administration to issue a ruling for how to deal with disability claims for CFIDS is the single most important thing we have accomplished. Kim (Association President Kim Kenney) and I made a series of trips to Baltimore over a couple of years and, through persistence and the involvement of a few key experts in medicine, research and disability policy, we convinced them that there was sufficient evidence and potential cost savings to warrant a ruling.

Now we hear from patients around the country, and from disability attorneys too, that the ruling has significantly decreased the time it takes to get an SSDI CFIDS claim approved. This means people are accessing benefits sooner and with less of a fight than had almost uniformly been the case before the ruling. There are still problems, but the situation is much, much better.

Q.        What can PWCs do to help?

A.        First and foremost: support the Association. Without The CFIDS Association of America, there is no responsible, organized advocacy. Your issue will cease to be considered. By support I mean by writing letters to your elected officials and by writing checks to help fund the Association’s programs. I cannot stress that point strongly enough.

Second, learn to tell your story. There is nothing more compelling than a thoughtful, well-told story that illustrates how CFIDS has impacted your life and changed your outlook for the future. Believe me, your elected representatives and their staff members listen to what you say. The more polished your message, the greater its impact. 

Encounters with politicians and public health people are almost always brief. You can be more effective by selecting a few concrete examples than by sharing a thorough report of what you went through to find a compassionate doctor.

Try making comparisons: “I used to keep the books for our three family businesses. Now the cognitive problems I have make it hard for me to complete the order for my kids’ school pictures.” Or: “I used to enjoy performing in our community theatre musicals. Now I have trouble processing the noise and sensory input involved in going to the grocery store.” Use these scripts when talking with or writing to public officials. They help make the experience real to people you’re trying to influence.

Q.        What else?

A.        Participate in Lobby Day. For 12 years we have gone to Capitol Hill, meeting with 70-80 congressional offices, giving advocates the opportunity to tell their stories and ask for things that will further research and education about CFIDS. It’s important to demonstrate that the issues we bring to the Hill have a real, human dimension. Lobby Day is our chance to do that. (See box for details on this fall’s Lobby Day.)

Q.        Any final thoughts?

A.        Don’t give up. I understand that CFIDS is not just a physical illness. Because it’s not well understood and not accepted in some circles, it can also bring isolation, despair, financial hardship and strained relationships. But we are making progress. Advocacy offers a chance to do something positive and to take action against the very thing that has stolen so much of your life. Use advocacy to fight back in a way that might leave you feeling exhilarated rather than exhausted.

CFIDS Advocacy Highlights

1988   An Illinois man whose daughter has CFIDS becomes the first person to testify before Congress seeking research funds for the illness.

1990   Congress instructs NIH to fund CFIDS Cooperative Research Centers.

1992   First CFIDS Lobby Day held.

1995   First CFIDS Congressional briefing held, sponsored by Sen. Harry Reid (D-Nev.) and Rep. John Porter (D-Ill.).

1998   CDC funding scandal erupts over claims that the agency diverted $12.9 million in CFIDS research funds to other programs.

1999   Social Security Administration releases ruling that standardizes CFIDS disability claims.

1999   CDC issues public apology for misspent CFIDS funds and offers restitution plan.

2001   After Rep. Porter’s retirement, The CFIDS Association begins effort to find a new CFIDS “champion” in Congress.

2002   Federal funding for CFIDS research approaches $14 million annually.

2003   Work begins to populate the new CFS Advisory Committee, which will report directly to the Secretary for Health and Human Services.

Join us at Lobby Day 2003

Advocates from across the country will gather in Washington , D.C. , on Sept.17–18 for The CFIDS Association’s 12th annual Lobby Day event.

Over the past few years, the event has drawn 70–80 participants, including people with CFIDS, family members and friends. Most participants report being energized by the opportunity to engage members of Congress about the pressing needs of those with CFIDS, even though it can take a physical toll on patient-advocates.

A training session and event veterans help newcomers become comfortable with both the message and its delivery.

The more advocates we have participate, the greater our impact. There’s plenty of time to register, so consider joining us in the capital this fall. For more information, call 704-365-2343, or send an e-mail message to lobbyday03@cfids.org.

Hopefully the September dates will also free us from weather-related issues associated with March dates (possible cold and snow) or summer dates (certain heat and humidity) that impose an extra barrier for many CFIDS patients.