“This event comes around every year at this time. I know about it only because public relations people write or call me to publicize something or other in connection with it.
“Trying to get people to think about XYZ disease for one month of the year is not my idea of effective advocacy. I think about XYZ disease a lot more often than that, and I guess that you do too. Even if we thought about XYZ disease all year long, that would be awareness, not advocacy.
“Some organizations that include the words “XYZ disease” in their names sponsor events that also include the word “cure.” They talk a lot about curing this incurable disease, and they have good reason to talk the talk, while failing to walk the walk.
“In addition to writing about XYZ disease, I do some of what we call “patient advocacy.” But this is essentially advocating for better treatment and understanding of the needs of people with XYZ disease at the hands of our medical professionals.
“True advocacy is organizing to demand funding for research. Inspired by the successes of some disease movements, more than 1,000 disease advocacy organizations are lobbying Congress for medical research funding.”
This information comes from “Disease Politics and Medical Research Funding” by Rachel Kahn Best, Ph.D., of the University of Michigan in the October issue of the American Sociological Review. The full-text of Dr. Best’s article is at http://asr.sagepub.com/content/77/5/780.full
I think that the biggest problem that XYZ disease advocacy faces is her last point. If somebody does find a cure for XYZ disease and succeeded in stopping it, that would indeed reduce suffering and save lives. The biggest XYZ disease organizations have long been promising a cure in five or 10 years.
It isn’t happening, and it’s not for lack of trying. Reversing XYZ disease in this country is, however, a social problem, not a research problem.
The strange thing is that socially other people -- even including some people who have XYZ disease -- continue to stigmatize victims. Consequently, many people with XYZ disease do not talk about it or attempt to draw attention to it or themselves. The result is that we can’t be much of an advocate for XYZ disease unless we talk and write about it.
More and more people will have XYZ disease as long as our society fosters it and those of us who have it remain silent. So let’s stop blaming our organizations for being ineffectual.