Kathi 2012-05-06 04:59:55
The Art of Patient Advocacy
By Christine Haran
Today, many people living with chronic disease are not just patients,
but also highly informed and passionate patient advocates.
While some get involved locally, by leading support groups or organizing
fund-raising drives, others lobby for federal health care legislation.
Although it helps when there is a celebrity behind a cause, there are
many lesser-known advocates who work tirelessly on behalf of people
living with serious illness.
Patient advocates can be a powerful force when they descend on
Washington to convince legislators to keep an eye on a cure, and assure
patient rights and insurance protection.
With last year’s introduction of the Inflammatory Disease Act, the
Crohn’s and Colitis Foundation of America, or CCFA, has been leading an
effort to pass legislation that will increase funding for research and
improve insurance benefits for people living with inflammatory bowel
Below, Suzanne Rosenthal, who founded the CCFA shortly after her own
inflammatory bowel disease diagnosis, discusses the role of patient
advocates, and how people can get involved in advocacy efforts.
What is the CCFA? The Crohn’s and Colitis Foundation was founded in 1967
to find the cause and cure for Crohn’s disease and ulcerative colitis,
which collectively are referred to as inflammatory bowel disease. These
are chronic diseases that affect upwards of a million people, many of
them children and adolescents.
What are the CCFA’s goals? The advocacy that the Crohn’s and Colitis
Foundation is engaged in is primarily directed at passing federal
legislation. Our major effort is the first inflammatory bowel disease
act, which was introduced into the U.S. Congress last year. The passage
of this bill in the House and Senate would add significant new dollars
to the National Institutes of Health [NIH] to support inflammatory bowel
We also have public education programs, patient education programs and
about 380 support groups around the United States, and we have a very
instructive and helpful Web site.
Why is the patient advocacy important? There are two major things that
come out of patient advocacy. One is that it can move Congress in such a
way that they respond by including powerful language in House and Senate
bills on health issues that indicates their interest in having research
advanced in the various federal institutions, such as the NIH and the
Centers for Disease Control [CDC].
Secondarily, it gives people who have the disease a sense that they’re
doing something about it. In addition to running local advocacy chapters
and running the education meetings, people feel like there’s something
bigger than them in which they can take part.
How can people become involved in advocacy? Getting involved with an
advocacy organization is a good start. On our Web site, we have
announcements about our advocacy efforts, and describe how our members
and their friends and families and business associates can write letters
to their congresspeople asking them to support the two bills that we’ve
We’ve waged a very significant advocacy effort on behalf of the bill,
including one day two months ago, when we had 300 people come to
Washington, D.C., to visit with their congressmen and senators and to
learn more about what they could do when they get back home. A mother
with her 8-year-old son, who has had inflammatory bowel disease since he
was 2, participated. The boy testified before Congress, describing the
illness and what it’s done to him. He was brilliant.
Patient advocates can also sit on advisory panels and public education
clearinghouses run by the federal government. I was an advocate
representative on the advisory board at the National Institutes of
Diabetes, Digestive, and Kidney Diseases, which is the major institute
with the responsibility for advancing research in inflammatory bowel
disease. I also served on the advisory board for the National Digestive
Disease Information Clearinghouse.
Patient representatives are there to be sure that the doctors and
scientists remember the patient concerns. For example, sometimes we have
another perspective about how to make clinical trials more
patient-friendly. We put a face on the disease. It is important for
researchers to remember that these aren’t just numbers on a page.
What does the Inflammatory Bowel Disease Act call for? It calls for
advances in inflammatory bowel disease research at the NIH and at the
CDC, as well as having the General Accounting Office look at the
problems people encounter when applying for state disability insurance.
It has been very difficult for a patient with inflammatory bowel disease
to receive disability. The legislation also calls for other things that
relate to living with the diseases such as insurance coverage for
What other legislation has CCFA been involved in? We have always
supported bills that affect people with chronic disease such as the
Genetic Information Nondiscrimination Act, which is important in terms
of protecting the privacy of the patient. We’ve also represented
patients in terms of legislation for better access to specialty care,
because these diseases are very complex in nature and are best managed
by specialists who see a lot of people with these diseases.
What’s the difference between an advocate and a lobbyist? An advocate is
just a more palatable word for lay people and volunteers to use, because
the word “lobbyist” is used now with reference to professional
lobbyists, someone who is paid to represent a particular cause. But the
fact is we are lobbying our congressmen, meaning informing them,
educating them, which is perfectly legal.
Do you find that advocates for different diseases are able to work
together or do you feel like you end up competing for funding? Overall,
one could say that there’s a competition for funds. But people are
beginning to understand that if the water level rises, all boats rise
with it. So in helping to get more money into the congressional budget
for the national institutes, more funding trickles down to each disease.
There’s a significant bill right now that was introduced by Sen. Tom
Harkin, D-Iowa, Sen. Arlen Specter, R-Pa., and Sen. Diane Feinstein,
D-Calif., to increase funding research at the NIH, at the same time
they’re trying to fight wars and do everything else. So we’ve been
advocating for that, knowing that if it helps everyone, it helps us out
What is your advice to someone who wants to become a patient advocate?
To learn as much as possible about the particular bill or program that’s
being advanced by the major advocacy organizations. And to let the
people who are organizing the activity know how you’d like to get
involved, whether you would want to come into Washington or whether you
want to send letters to congressmen and women, as well as to visit their
Also, advocacy organization membership is very important. The Crohn’s
and Colitis Foundation currently has about 100,000 members. We see that
as a good start, but if there are 1 million people out there who have
these diseases, the percentage is too small. When we talk to our
congressmen and women, it really adds impact to our message to say that
there are X number of people affected, and we have X number of members
who care enough about what happens in their lives to become a member, to
be kept informed, and to be available to help with advocacy. The number
of people involved, both directly and indirectly, is going to add
immeasurably to the impact.
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