Disease charities

A commenter writes,

I’d love to see a blog entry taking a hard look at disease charities.  I’ve always
hated the American Diabetes Association for its bloviating about a
"cure" (the agency has no idea what that means, but someone must have
told them the phrase loosens donors’ purse strings), its craven refusal
to say anything about diet except Thou Shalt Obey Thy Provider’s
Decrees and Stop Cheating, its belief that it needs no evidence to
support its assertions, and its rendering all its prose for patients at
a sixth-grade reading level in condescending BIG-ASS TYPE, the
maintenance of distance between authority and victim being more
important than conveying information.  Lately I read Barbara
Ehrenreich’s attack on breast cancer marketing in Harper’s (2001?) and
found an expose of the American Cancer Society at
http://www.preventcancer.com/losing/acs/wealthiest_links.htm.   At the
other end, everyone I know who’s familiar with the American Lung
Association loves it, and I myself support the American Kidney Fund,
the one that provides help to low-income kidney patients, in contrast
to the National Kidney Foundation, which is probably a good outfit too,
but I don’t want to finance white male nephrologists when there are
poor people in line.  So there probably are good disease charities and
bad ones.  What do you think? 

I think:

  • that we hear much more about whether or not these charities should put seals of approval on products than about what they’re doing with the money they get for issuing those seals.  See the New York Times article on the extent to which the American Diabetes Association needs to subsidize its work through deals with food companies.  Nowhere does it ask, "Is this charity’s work worth supporting?" or even, "What the hell does this charity do?" 
  • that we lack consensus on what the disease charities are supposed to do, without which it’s hard to criticize them for not doing it.  Example: I recently learned that insulin is not available in generic form, despite having been around since the 1920s.  This means huge costs to the many diabetics who require insulin.  Wouldn’t one expect the Diabetes Association to challenge whatever entrenched interests are making life more difficult for its constituents?  (Instead, it’s a group of governors worried about Medicaid costs.)  But if the Diabetes Association considers itself strictly a source of information for people dealing with the disease, battles with patent-holders may not seem central to its mission.  (On the other hand, if the Association is truly a source of information, insulin’s peculiar status as a drug protection from generic competition shouldn’t have been such a surprise that it rated prominent coverage in the paper of record.)
  • that whatever we imagine the disease charities to be doing, we probably don’t expect them to be using our contributions to assure drug company profits.  Yet a recent Wall Street Journal piece, "Why Nonprofits Fund For-Profit Companies Doing Drug Research," described the Juvenile Research Diabetes Fund’s decision to do just that: pay a drug company to complete clinical trials on a drug whose profit potential was apparently insufficient to make it worthwhile for the company to conclude the trials on its own.  Whatever the rationale–"Our constituents need hope!" is the most common one–it seems self-evident that having contributions to charities serve as profits to drug companies is a misuse of the funds, and one that will attract the attention of some attorney general soon.  And not a minute too soon.

Can anyone contribute an insider’s view of the disease charities?  What’s here is doubtless just a scratch on the surface.

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One Response to “Disease charities”

  1. Name Not Given Says:

    I can understand your frustration with what seems to be the mentality (or lack of communication otherwise) that since
    there is no cure yet, that is enough to defend the need for additional funding. As someone involved with a “disease
    charity” your comment exemplifies the need for additional “arguments”. We recently surveyed of our donors – got a
    30% response rate – and learned they valued three areas: public education about the disease, educating doctors about
    the disease and assistance with the quality of life issues they face daily. Those most interested in research were family
    members who have watched a loved one suffer. now, I’m not sure where I am necessarily taking this response, other
    than to say how much I hope to prove our worthiness to donors like you. Every nonprofit, really, needs to focus on
    the community we serve. It’s not about us. It’s about them.

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