Thursday, December 06, 2012


“If we were in the same room, I’d be willing to bet that you didn’t know that November is National XYZ disease Month.  Why should you?

“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. 

“Talking about curing XYZ disease raises money and awareness for these organizations to continue. This is fundraising, not advocacy. In fact, none of us who have XYZ disease are doing any advocacy well.

“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

But deciding whether XYZ disease is underfunded or not is a complicated question, Dr. Best tells me. “It’s also a complicated question whether a disease has enough advocacy or not,” she says. “It’s hard to rank diseases on these scales because there are lots of different ways to compare diseases, including mortality, prevalence, amount of suffering, and potential for scientific progress.”

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.


The above is ripped off from David Mendosa’s newsletter about diabetes.  Subscribe at <>  Diabetes Update  Number 173: When to Check Your A1C.    I hope he will consider it good advertising.  I highly recommend subscribing, whether or not you have diabetes, because it applies to general health and because he fancies it up with lots of nature photos.  But also, I wanted to make the point that the problems people are having with attempts to get action and funding for specific diseases are not related so much to the kind of disease it is -- rare or not, stigmatized or not, affecting children or not -- as it is to the way we are structuring our activism.  There are so many things in our society that have become stale and pot-bound.  We need to do a lot of shaking-up and questioning.  And many people are realizing it.

Elizabeth Kahn Best is thinking about this.  In her article she says:

Using data on 53 diseases over 19 years, I find that in addition to securing direct benefits, advocacy organizations have aggregate effects and can systemically change the culture of policy arenas. Disease advocacy reshaped funding distributions, changed the perceived beneficiaries of policies, promoted metrics for commensuration, and made cultural categories of worth increasingly relevant to policymaking.

Basically she is recommending that patients, through advocacy organizations, get control of the federal budgeting allocations by vividly portraying the consequences of the disease (including both social costs in terms of suffering and in terms of dollars needed in the future) and making a case for the moral significance of funding.  She says,  “Advocacy organizations can produce three types of political outcomes: direct benefits, distributive changes, and systemic effects.”  This is worth reading about on her terms.

In addition I see something a little different.  First of all, disease is not just a nation-by-nation issue anymore.  As people move around more, as the climate changes so that vectors change their range, as diet changes, as poverty goes up instead of down, the problems are cross-border, cross-ocean, cross-class.  It has never been more true that if a Chinese peasant’s baby has the flu, we should worry.  This is highly political.  Though in the past the spread of a disease could be a long, gradual slope (the first known jump of HIV from chimp to human was in 1908 !)  today it can spread like wildfire, the way wildfire spreads today.

On a brighter note, many diseases appear to be converging, to be disorders of cellular-level systems that we daily understand better.  Doctors have been saying for some time that when we get to the level where we can cure AIDS, we will be able to cure and REVERSE a whole cluster of afflictions.  They are messed-up feedback loops, missing molecules, misfiring mechanisms -- stuff we didn’t even know existed ten years ago.  Or maybe even two weeks ago.  The germ theory is old-fashioned.  The doctors are not so much bug-hunters now.  They are code-readers.

At another level, we’re beginning to realize we could save ourselves a lot of trouble if we would fit into our environment a little better.  Not just diet and exercise, but also attitude, emotional stability, and generosity to each other.  It almost sounds religious -- certainly moral.  Remember “moral outrage”?  That wasn’t about taxes?

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