Are we too quiet?

I had a conversation this morning that has left me thinking, wondering, planning, dreaming….

The conversation was about patient engagement, access to medications and much more. It was very interesting and a bit refreshing.

The ins and outs of the conversation are neither here nor there.  What got me thinking however was his claim that after working for years in the realm of cancer drugs, he found that support for new drugs in diabetes was much more lacking. He didn’t see the same enthusiasm and support from groups and individuals that there was in the world of cancer.

All of this got me thinking. How could we be louder? I know that patients love to see new technologies but sadly often can’t afford them. What if working with by pharma companies, access could become easier? What if we are too quiet? What if we weren’t talking to the right people? How could we fix that?

I wondered if we need one super diabetes advocacy group.  A group that wasn’t bothered by anything but advocacy. It wouldn’t do walks, build camps, or even fund research.  It would  focus solely on issues of concern to those living with diabetes.

It would advocate for fairness… Fairness for children in schools.  Fairness for adults in the work place to have access to quality care through private and public insurance.  Fairness for our seniors to have the proper tools to look after their diabetes needs.

Who would it talk to? Everyone! This would be a group that would unite grassroots organizations all over the country. Instead of each province, each town, or individual fighting on their own, it would draw on the wisdom, experience and knowledge of the group.  Together they would talk to governments, agencies, insurance companies if need be.  They would educate and advocate for improvements.

Where would this super group meet? Online of course.  If we are looking at a power house that reaches the entire country then online meetings would be the logical choice.  Group, in person brainstorming would be great now and then but that would cost money.

Money. That’s another issue of course. Yes, this super group would have to find a way to fund itself.  It would have to be able to compensate people for some of their time.  It would have to be able to find a way to pay for travel and meetings with people.  I have no idea as to how that would work.  I have never taken this dream to reality.  That’s why its still a dream.

Back to the basic group however.  It would be made up of people…real people living in every area of the country who are currently fighting for change.  These people would have a background and a network that they would represent when they came to the super advocacy table.

The group would have people knowledgeable in numbers and finance.  There would be people with a scientific background who could amass journal data.  There would be people knowledgeable in media who would change our reputation from quiet and passive to strong and loud.

What do you think of the idea of a group dedicated to advocacy alone? Again,  group that would not fund research or send kids to camp.  It would not provide pumps or supplies.  It would seek access for everyone. It would seek access to safety in schools. It would seek access to the most advance medical technology at a reasonable cost.  It would seek fairness amid insurance companies. It would seek assistance for seniors.

What else would your super group need? Who would you want to see involved? How would you fund it? What would you do to make the voice of the Canadian diabetes community louder?

Please let me know.  This really has me thinking. Hopefully it has you thinking as well. super cape

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11 thoughts on “Are we too quiet?”

  1. What a great read! Thank you so much for writing this, as a T1D mom it’s has been an overwhelming stressful roller-coaster ride. The general population listen to the stereotypes and assume it’s is from being unhealthy or lazy, it is beyond frustrating. I will be sharing the heck out of the this article and if that super group is form I will be there!

    1. I think each group of CDA meetings are made up of different dynamics. Yes a lot of T2 do attend these meetings as their Drs aren’t well informed.
      The scariest thing to me about newly diagnosed T1 especially children is that they are not sent to endocrinologists until there is a complication. A general family dr or pediatrician cannot be up to date on research as someone who specializes like an endocrinologist. I’ve been diabetic for 33 years and some of what parents aren’t being told can be scary. Especially parents not willing to do research to figure things out themselves.
      The CDA is involved in T1 diabetics as well as T2. CDA supports camps, seminars, youth but if these individuals don’t attend meetings then how can a local group assist those that don’t attend.
      This is just my 2 cents worth.

  2. I would agree. IME: some of us are advocates, most are too passive & will not help themselves. The CDA is primarily a Type 2 organization & advocates little for us Type 1’s.

  3. I would think we’d need an adjunct foundation plus a grant writer to solicit funds for the group. Marketing, media, public relations, and lobbyists would be critical. Surely there are a significant number of them touched by T1d….

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