Are Diabetes Advocates in Canada too quiet?

are diabetes advocates too quiet

I recently had a conversation about diabetes advocates that has left me thinking. Are diabetes advocates in Canada too quiet?

The conversation itself was about patient engagement. We were talking about 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 the other person’s claim that after working for years in the realm of cancer drugs, the support for new drugs in diabetes seemed to be lacking. This individual felt that there was not the same enthusiasm and support from groups and individuals as there was in the world of cancer.

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

There are many advocacy groups in Canada and around the world. There are the diabetes associations. There are chapters of the Juvenile Diabetes Research Foundation throughout the world. You can also find many grassroots groups and organizations in most countries.

As social media grows, so do online groups. Canada has seen the inception of such groups as Type 1 Together and the US has DPAC. There are also many small communities that have formed and are ready to advocate and educate the misinformed at a moments notice.

Is the Canadian diabetes advocacy voice too quiet? Is the worldwide voice of people living with diabetes too quiet?

real diabetes in a cup

Actually, I don’t think so. I think that the voice of the online diabetes community is getting louder and stronger. Just look at how quickly the people calling a Starbucks drink a “cup of diabetes” were corrected on Instagram. A lady recently balked at a man checking his blood sugar levels and injecting at the table in a restaurant. She now has her own meme thanks to the diabetes community.

doreen

Does this translate into improved access to diabetes drugs for Canadians? Most likely not. It is getting people talking, however. I think it is also creating a stronger, louder voice. (Ask the Minister of Finance in Newfoundland and Labrador what happens when you make a flippant remark about diabetes care in that province.)

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11 thoughts on “Are Diabetes Advocates in Canada 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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