Fear Arousal

UPDATE: A good friend provided me with a link to the #IDF2019 conference in Busan, South Korea. In my opinion, Dr. Boulton’s remarks at the conference are reasonably consistent with the interview referenced below. I encourage everyone to view Dr. Boulton’s remarks. His remarks start at approximately 2:21:45 (h:mm:ss) and are about ten minute in length. Also, watch a little longer to see Renza’s response!

https://www.youtube.com/watch?v=oktLZmTrCfU

I need to start out with an apology.  Due to the dynamics of a global diabetes online community, I woke up Wednesday morning on the North American east coast and shortly after read the following tweet:

I had not begun to drink my morning coffee, and as my brain took in the tweet, I mistakenly thought the speaker that was being tweeted about was talking about health providers using fear when discussing diabetes with their patients.  I took a few minutes to gather my thoughts and tweeted:

Upon reflection, the waterboard comment was over the top, but I have to apologize for misreading the original tweet too.  As the day progressed through morning, afternoon, and now sunset, I came to the conclusion that I needed to blog about this; and I needed to make sure I had this quote right before I started.  

The quote about fear and diabetes comes from the incoming President of the International Diabetes Federation (IDF), Dr. Andrew Boulton.  To be clear, Dr. Boulton is clearly a leader in the diabetes community.  He has earned numerous awards from diabetes organizations around the world and is a prolific author. He is also a past president of the European Association for the Study of Diabetes.  

That being said, there has been a steady stream of concern coming out of the IDF conference currently going on in Busan, South Korea.  My first indication was the tweet shown above.  Then the following tweet showed up in my feed:

and also the real-time response from the amazing @RenzaS:

So I wanted to get more background to start talking about this.  However, as with almost all conferences, it is difficult to get the presentations and/or speeches while the conference is going on.  Typically, you have to wait for the proceedings to be published.  So I began to look around to find background material.  I had a feeling that Dr. Boulton probably had said these things somewhere before.

Now, I can’t say for certain that this is what was said in Busan, but Dr. Boulton was interviewed back in 2017 by Christine Wiebe at Medscape.  The text of the interview can be viewed here.  It is a pretty quick read, and all of the essentials that we have seen today are there.  Here is probably the key part:

Right now, governments still don’t take diabetes very seriously, especially compared with the attention and funding dedicated to cancer. Leaders of the diabetes community could learn from efforts to raise awareness and drive research in the field of cancer, he said, as well as from efforts to increase cancer screening.

“Fear arousal works,” he says. Many more people now get mammograms and other cancer screenings because they don’t want to die of cancer.

Unfortunately, prevention and screening are harder to “sell” with diabetes.

“The thing is, it’s not very sexy to take off your socks and shoes,” Dr Boulton says, referring to diabetic foot exams.

After reading this, I went back and re-read that original tweet that stirred my response this morning.  That is when I knew I was incorrect.  The Doctor is not talking about health care professionals, he is talking about a marketing campaign based on fear arousal.  Using fear to generate awareness, research, and screening.

There is more too.  Part of the interview touches on the very things that @RenzaS was talking about:

“We need societal adjustments as well,” he says. Cities and buildings need to be designed in ways that encourage healthier lifestyles, such as improving public transportation and walking paths. Advocacy organizations, such as the International Diabetes Federation, need to be more proactive in advancing the diabetes agenda.

So there at least is some common ground to build on outside of the discussion of fear.

So like I said, this is not a transcript of what Dr. Boulton said in South Korea today, but this past interview gives some indication as to the basis of his remarks.

Now, I still stand by the content of my morning tweet. Carrot and stick motivational tools are simply the wrong approach to the complexities of diabetes self-management.  With some time and distance, I now realize that Dr. Boulton was most likely speaking to the audience of non-diabetics, and not people with diabetes.  

After quite of bit of contemplation and thought, I have been trying to find the words to respond to a campaign of fear; even if the campaign of fear is conducted in the name of advocacy, research, and screening.  In addition, it has been my experience that when speaking about chronic or terminal disease, it is best to be as specific as possible, and to not speak in generalities. We all live complex lives and our relationship with disease is also complex, so there is a multiplier effect.  It may be that because Dr. Boulton has spoken in generalities that we are having this conversation at all. The problem is that any response also has to speak in generalities, and I will be the first to admit that Dr. Boulton is a much better speaker than I am.  So just a quick caveat.  I’m going to push forward, but as I do, I don’t wish to offend or misrepresent anyone.  I’m typing through a minefield here, so please, constructive criticism is welcomed, if I get it wrong let me know, I want to learn.  However, please don’t take this personal – that is not my intent.  Also, please go back and re-read the linked article above.  I need to take some quotes here, and I don’t want anyone to lose context.

First, I am uncertain as to what Dr. Boulton is referring to when he says “fear arousal works.”  What is “working?”  Dr. Boulton offers, “Many more people now get mammograms and other cancer screenings because they don’t want to die of cancer.”  So this indicates the comparison of diabetes to cancer (personally, I think this is a poor path to follow).  I posit that the best next step in this course would be to follow-up the subjective language (“many more”) with actual numbers to show the dramatic difference in cancer vs. diabetes screenings and polling data showing concern about a cancer diagnosis vs a diabetes diagnosis.  

On the other hand, I wonder about this approach, painting the cancer community as based in a fear arousal campaign.  Currently here in the United States the American Cancer Society current advertising campaign emphasizes the supportive role of the non-profit organization. Highlighting free rides and lodging around chemotherapy treatments. Patients (or actor portrayal of patient, I’m not sure) are portrayed as hopeful, somewhat smiling, and making aspirational statements about the future.  Maybe the age of fear arousal has passed, at a minimum, it is an interesting juxtaposition given this time and place.

Moreover, when talking about patients, it has been clear to me that people with diabetes are often portrayed as causing the disease themselves.  This is reflected about midway through the subject article with Dr. Boulton: 

“Studies show that about one half of all type 2 diabetes causes could be prevented with lifestyle adjustments, Dr. Boulton notes. But the burden of prevention should’t be placed on individuals alone.”

This is where I think Dr. Boulton may ultimately come up short.  Again, I don’t know what was said at the conference in South Korea, but given the similar themed article from 2017, Dr. Boulton states that half of all type 2 diabetes can be prevented, essentially shaming 50% of the type 2 community (and really shaming all of us, because none of us know if we are in the 50% that he states brought it on ourselves).  At the same time he advocates for what I suppose is a marketing campaign to instill fear in the greater population.  Maybe I’m foolish, but living in a world where millions of people living with a disease are shamed while simultaneously the general population is subjected to a campaign to arouse a fear of the same disease is something more appropriate in Panem, or New Chicago, or The Glade than 21st century earth.  

I believe that Dr. Boulton should be applauded for putting research, advocacy and screening at the forefront of the International Diabetes Federation agenda.  He is a talented and well respected leader in the diabetes community.  However, I do not believe arousing fear is the proper way to move forward.

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