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Re: [IP] Diabetes Advocacy and the ADA

Date: Tue, 27 Oct 1998 17:37:20 -0800
From: Sam Skopp <email @ redacted>
Subject: Re: [IP] When is a $2 billion raise bad?

> At 05:20 PM 10/27/1998  Kasey Sikes wrote:
> >USA Gang:
> >
> >Just received a copy of this e-mail and it made my blood boil.
> >I hope each of you is equally outraged and will contact your
> >congressmen to do something about it.
> There are three reasons why I think this happens. One is that
> we're far less vocal than the other groups. The second is that
> there is a false impression in the general population that
> insulin or pills "cure" diabetes. The third reason is that there
> is a gross misconception that people get diabetes due to
> overeating or too many sweets (i.e. it's your own fault).
> So, why isn't the ADA better educating both the population and
> our Congressmen? Why aren't they leading loud protests? If there
> were lots more news conferences, marches and TV spots, maybe it
> would be 25% not 2.5% I don't think the average person has a
> clue as to the number of people killed by diabetes. Maybe if the
> facts were more visible, things would be different.

> Sam


I think you're probably right about the lack of visibility we have. Some of
us work at changing that. I've visited Washington twice in the last 4 years
to lobby about diabetes. Last spring I attended the ADA annual advocacy
meeting which lasts for three days. About 600 people attended. Compare that
to the event I helped organize last year here in Massachusetts, Diabetes Day
on the Hill. About 500 people attended that one.

In both cases these events were organized by the ADA. In both cases the
turnout was appalling. I know that going to these things takes time and
money, but for most of us if we get positive outcomes we may end up with
longer and more enjoyable lives. Speaking personally I get very demoralized
by the amount of effort some people put into diabetes advocacy and the
amount of freeloaders that benefit from that effort. If even 10% of the
diabetes population worked on advocacy related issues (contacting reporters
in TV and Press about lack of coverage for diabetes related issues, writing
letters to local and federal representative, visiting a representative,
etc.) the amount of publicity would be ENORMOUS. And the results significant
and profound.

Sam, I don't think you should be blaming the ADA for the lack of education.
The ADA is only an organization made up of, and representing their, members.
If the members themselves don't take up the cause, then there's not much the
ADA can do. And believe me, they do a lot. At the Washington event last
spring the speaker of the house Newt Gingrich came at spoke to us at
lunchtime. A hall of over 500 people. What press coverage did we get? Zero.
Nothing. If he had done the same for a meeting of people with cancer, or
some other chronic disease, I think I'd have seen more.

Anyway, I'll get off my soapbox now.

Remember there's another meeting in Washington DC this coming spring. There
are some funds available to help cover some of the costs involved in getting
there. It's a fun event. You get to meet a lot of folks who have lived with
diabetes for a long time, and that's always a learning experience. I plan to
be there again, anyone else making plans?

There's also another event in Massachusetts this spring to lobby once again
for comprehensive diabetes legislation. This is only about the SIXTH year
we've tried to get this passed, with support of those who are affected by
diabetes we may even succeed this year. Let me know by e-mail
(email @ redacted) and I'll keep you notified about dates, etc.


Insulin-Pumpers website http://www.bizsystems.com/Diabetes/