Patient advocacy or something else?

When is it true patient advocacy and when is it manipulating us and trying to sell us something? It can be really hard to tell the difference.

Investigating those behind an advocacy group and uncovering what they might be trying to sell us can help, but even with this information, it can be hard to see when we’re being taken advantage of and not getting the straight scoop.

As Dr. Ivan Oransky, deputy editor of The Scientist and editor-in-chief of Health and the Media, noted in a recent article in the journal Lancet, the internet is rife with "patient advocacy" groups whose hidden agendas are to advocate for special interests. Their educational missions, he found, are focused more on selling the “disease” and exaggerating the magnitude of the problem. And those advancing treatments, typically paint overly optimistic pictures of their treatments' successes.

As recently reviewed, surreptitious marketing through patient and advocacy groups can be much more successful than regular advertising. Pharmaceutical, weight loss, alternative, and bariatric industries are widely behind internet patient advocacy and support groups. Their marketing goals are often masked in educational and lobbying efforts.

But there is a big difference between someone working on your behalf versus their own.

Here is a description of a fictitious advocacy group not unlike ones out there; but by changing one phrase, it may help us begin to see the difference.

We’re the brown eyes advocacy coalition. You suffer horrible stigma in life. Because of your eyes, you’re less like to be hired, will make less money and have fewer job promotions, and be more likely to be fired because of your eyes. School will be miserable, between the harassment and rejection of your peers, to more difficulty getting into college and getting good grades. And healthcare professionals assume awful things about you because of your grotesque eyes, will make you feel uncomfortable, most don’t want to care for you because they’re “repulsed” by your eyes, and you’ll not get good care. We know and we understand. Eye stigma destroys your personal and social wellbeing and health. But we’re here for you and know that you can’t help having brown eyes because you have a serious disease. And in this environment where you’re surrounded by tempting cosmetics, you can’t help but use makeup that makes your eyes even more prominent.

To stop brown eye stigma in our society, we are working to help educate you, as well as the public, medical professionals and legislators, to know that brown eyes is a serious disease that’s become epidemic. To calculate if your eyes are classified as dark enough for brown eyes disease, here is a handy measuring tool. This morbid condition is associated with all sorts of deadly health problems and needs insurance coverage for treatments. Brown eyes cost the country hundreds of billions of dollars, raise medical costs for everyone, and kill hundreds of thousands of people every year. We provide tools for you to help us fight to eradicate brown eyed people. You can help by speaking out and writing your congressmen, insurance providers and others about how awful your life is while living with brown-eyes, the risks associated with your disease, and how you deserve access to treatment. You can become a source of inspirational stories about how much better you feel and how wonderful your life is now that you fit in since having our eye-changing surgery. And you can support others afflicted with brown eyes disease and become an advocate for change — to make sure others understand the disease and influence decision makers to cover brown eye treatments.

Brown eye disease, of course, is not a real disease. Nor is crossing an arbitrary number on a chart of weight and height. But what happens, in an amazingly short period of time, when anyone is surrounded by prejudice and told that they are diseased and inferior, is that they come to internalize the beliefs and take on the roles they’ve been taught. This was poignantly illustrated in the classic ABC News documentary, "Eye of the Storm.” In 1968, Jane Elliott, a teacher in a small, all-white Iowa town, divided her third-grade class into blue-eyed and brown-eyed groups and gave them a startling lesson in discrimination. That original film was later remade into the PBS/Frontline film, A Class Divided, [which can be viewed here] and other films about the exercise repeated around the world.

Advocating for a group of people encountering discrimination, does not revolve around working to change those being discriminated against, let alone eradicate them. Can you imagine the Civil Rights movement promoting skin whitening and cosmetic surgery rather than raising awareness? Nor does it involve accentuating every negative stereotype and unsound scare about their lives, bodies and health; their cost to society; and fictitious death counts. It doesn’t use those suffering stigma to market products aimed to change them so they look more like everyone else. It doesn’t work to intimidate stigmatized people and make them feel worse about themselves and encourage them to commiserate with “other sufferers” about the misery that is their life.

True advocacy for discriminated people works to change misconceptions and false beliefs behind stereotypes; offers positive role models, inspiration and strength in community; and helps to empower people with sound knowledge and support to improve the lives and welfare of those people they are advocating for.

One of the most common techniques used by weight loss interests, as we saw in a recent example, is to use anti-discrimination to appear to be advocating for fat people — while simultaneously promoting the very stereotypes used to discriminate against them; and lobbying for government funding and insurance coverage of their interventions and programs to “treat,” “prevent” or “eradicate” obesity.

There really is a difference between working on behalf of people versus one's own interests.

Coming up, we’ll examine another advocacy group in the news and its new weight stigma literature, filled with prolific descriptions of the negative attitudes about fat people. Yet, their “health consequences” of discrimination section left out much of the research on the adverse health effects of discrimination. We’ll reexamine that, too.

© 2007 Sandy Szwarc