Our Reaction to the New York Times’ “Midnight, Three, and Six”
By Kelly Close
At diaTribe, we are always grateful when diabetes receives coverage in the media. Since it affects so many people, it’s always a mystery to me that it gets so little exposure. That’s why I was excited to see the short documentary “Midnight, Three, and Six” featured on the New York Times website. The film follows the family of a type 1 teenager named Grace, and includes interviews with Grace and her mother on how they manage her condition daily. While some have praised the film for displaying the real hardships these families face each day, the film has caused some frustration within the diabetes online community. The documentary struck a nerve because it highlights a very dark and fragile side of what it’s like to live with type 1. Of course, this is only one story, and our hearts go out to this family and those who relate to the struggles portrayed in the film. However, we’d like to share our reaction to the film and how we believe it did not fully capture the broader picture.
The film suggests that to be an effective parent of a type 1 child, you must be extremely involved in their management. The title of the documentary, “Midnight, Three, and Six,” refers to the parents waking up each night to check their child’s blood sugar at midnight, 3 am, and 6am. For sure, some parents have a similar routine and find this strategy works well for them. But I also know of many parents who don’t wake up so much or who value giving their child independent management of his/her diabetes. There is no “right way” to be a parent – particularly a parent of a type 1 kid – but any parent watching this film may be misled into thinking that if they aren’t managing their child’s diabetes 24/7 in an obsessive and fearful fashion, they are at fault.
Why does the film fail to mention CGM? Severe hypoglycemia is understandably a big concern within the family – indeed, I don’t know anyone with type 1 whose “biggest” concern isn't severe hypoglycemia or access to good technology and therapy that helps avoid it. The first scene depicts Grace and her mother going through all of the countless diabetes supplies they need each day (test strips, insulin, meter, pump, tubing, skin wipes, backup kits, a hypoglycemic alert dog etc.), but a continuous glucose monitor (CGM) was not on that list. Of course, CGMs are not used by the majority of people with type 1; in fact, the T1D Exchange cites that less than 10% of all type 1 patients use a CGM, and this is even lower for teens. But given the clear concern over going low (particularly at night), and the problems they have experienced with severe hypoglycemia, Grace and her family could benefit significantly from wearing a CGM to monitor her blood sugars every five minutes. We sincerely hope her family can gain access to one as soon as possible. While of course the ability to do this depends highly on their insurance coverage and financial situation, we would have appreciated a mention of this technology within the film itself. CGMs help eliminate the anxiety around severe hypoglycemia; they sound alarms when glucose levels are going low to help decrease the stress of waking up in the middle of the night in fear of nighttime lows, and they help provide a very clear visual of time spent in range.
The film places most of the emphasis on death, creating more fear than it does hope. The daughter mentions she knows four others her age who passed away from hypoglycemia – this is the highest I have ever heard. Certainly each incidence of severe hypoglycemia (and for lack of a better term, what I call super-severe hypoglycemia) is scary for all involved. However, while I know I would be heartbroken were that my experience, I do not believe it is representative of many people with type 1. I just read a piece on this same issue by the great Katie Bacon in A Sweet Life – she shares that a doctor said to her (a mother with a child with type 1), “Katie, human beings have very high thresholds. It’s really, really hard to cause someone to die from this [hypoglycemia].” I thought that was really well put – and maybe why I felt a little surprised that the depiction in the film was that this happened to a lot of people. In failing to point out that this story is extreme – The New York Times sadly misleads the public into thinking that death from hypoglycemia is commonplace. It is not.
In its efforts to promote the seriousness of type 1 diabetes and educate the public on its life-threatening risks, the film fails to acknowledge that people with type 1 diabetes can lead fulfilling lives. The film reminds me of the excellent way Kerri Sparling characterizes herself: “Diabetes doesn’t define me, but it helps explain me.” There is of course a tension between balancing the notion that people with type 1 diabetes can live full and active lives and the fact that they are taking a dangerous and potentially fatal drug like insulin (“Of course I’m okay!” balanced with “Oh my gosh! Insulin is such a crazy drug!”). To be sure, this film errs on the dangerous side. I worry about the families that I’ve heard from in the last several weeks with newly diagnosed children who watched this video and see no hope in sight, when that is certainly not true with the technology and support we have available today – again, of course, for those who have access.
Type 1 diabetes is a chronic condition with potentially threatening consequences every day. However, it’s far from a death sentence. To the editors at the New York Times, I applaud you for your coverage of a patient’s experience with a complicated disease. Sharing one family’s struggle shines a light on the challenges of daily management. However, the story does not end there, nor does it encompass the stories of more than ~1.5 million people who live with type 1 diabetes in the US, or the 27+ million people living with type 2 diabetes. I ask you to engage with many more patients to understand not only the trials of living with diabetes, but also the triumphs. Many of us not only survive the disease, but also have learned to thrive with the confidence to manage it and the hope that things will improve even further.
Kelly L. Close