TO TABLE OF CONTENTS
Chronicle Q & A
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.
does advocacy matter?
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
. 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?
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.
the top priority for the CFIDS lobby in
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?
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,
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
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
can PWCs do to help?
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
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.
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.)
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
CFIDS Advocacy Highlights
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
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
Join us at Lobby Day 2003
Advocates from across the country will gather in
, 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 firstname.lastname@example.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