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 fundraising drives, others lobby for federal healthcare 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 (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 disease. 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 US 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 disease research.

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 introduced.

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, DC 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 eight-year-old son, who has had inflammatory bowel disease since he was two, 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 nutritional needs.

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. Harkin, Sen. Spector and Sen. Feinstein 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 as well.

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 local offices.

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 one 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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