Saturday, June 20, 2015

ADA, Me and My MODY (Maybe) - Part 3

Journey to a Miracle
57 minutes + additional information

This is the final installment of my posts about what I learned about MODY at the 75th ADA Scientific Sessions.  You can read the first two installments in "ADA, Me and My MODY (Maybe) - Part 1" and "ADA, Me and My MODY (Maybe) - Part 2."  In this post I'm going to talk about the movie "Journey to a Miracle: Freedom from Insulin" that claims to be "A PBS documentary of a breathtaking cure for diabetes and the lives that were changed forever."

The movie, which is about an hour long, is a real tear jerker, mostly focused on the stories of a small group of children diagnosed with MODY (with MODY-3 in particular) who had previously been given a T1 diagnosis.  Once diagnosed with MODY-3 the children were able to start on sulfonylureas and moved off of insulin.  That is the miracle.

While my heart went out to the children and their stories I felt a bit dismayed at the message of the movie that you can just "cure" MODY by taking a little pill.  The movie portrayed insulin as a terrible life long burden with horrendous consequences.  And then suggested that taking this little pill would "cure" the patients of diabetes and that they wouldn't have any further consequences from MODY.  I'm not so sure of the validity of that message.

The movie was motivated by the story of Lilly Jaffe who was diagnosed with diabetes by her pediatrician when she was only a month old.  In 2006, a week before starting first grade after being diagnosed with MODY she disconnected her pump.  This was reported as big news in the Chicago Tribune.   Three years later an Illinois law called "Lilly's Law" created a registry to track and understand the genetics of MODY.  Kovler now manages this registry.  This movie is really about the story of Lilly and about 80 similar children who have been diagnosed by Kovler and Exeter and successfully moved from being misdiagnosed as T1 on insulin therapy to being properly diagnosed as MODY and moved to sulfonylureas.  The movies is primarily the result of Lilly's parents Mike and Laurie Jaffe efforts.  Below is a video of excerpts from the production.

Several families are highlighted in the film, obviously the Jaffe family, but also the Mathews family in England and the Moynihan family in Toronto.  By about halfway into the movie I was starting to wonder if the movie would deal with the inheritance aspect of MODY.  And they did, highlighting the identification of the father and grandfather in the Moynihan family as having MODY.  Each of them were also able to move off of insulin.  One really has to but wonder why neither of Lilly's parents were identified as having MODY.  Does MODY in fact not always express?  My understanding is that MODY nearly always expresses although it may have differing seriousness.

The movie highlighted the scientists behind the characterization of MODY and the discovery that sulfonylureas are a treatment for MODY-3.  The scientists include Prof Andrew Hattersley of Exeter, Graeme Bell of University of Chicago, Louis Philipson of Kovler, Frances Ashcroft of Oxford and Siri Greeley of Kovler.  Siri Greeley personally introduced the movie, but unfortunately did not stick around to answer questions.

The movie was clearly moving.  I'm really glad that the 80 people were able to find that they have MODY and get more appropriate treatment.  But I certainly did not come away feeling like they were "cured."  I wasn't really convinced that they still would have to deal with diabetes and it's consequences.  I just remain unconvinced.

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