Decided to post this just because you can’t laugh enough with diabetes. Haidee, diagnosed with type 1 at two years old, illustrated my book, Diabetes Do’s & How-To’s. A gem, both book and artist.

 The cost of insulin has skyrocketed in the past several years. But there’s another costly wastage no one is talking about. And that’s the two units of insulin you shoot into the air to prime your insulin pen. More about this below.

Regards the cost of insulin we blame Pharma who blame PBMs Pharmacy Benefits Managers. From what I can make of it they’re the middle men, and women, who are part of the cost determination for drugs and which drugs get on your health insurer’s formulary. If your drug isn’t on it, you’ll pay a significant premium to continue to use it, or be forced to switch from what your doctor recommends to what your health insurance covers.

Making a life and death drug like insulin unaffordable for large groups of people is criminal in my eyes. And then it occurred to me, when I was generously given an inpen, that the priming wastage that occurs using an insulin pen is also criminal.

I was eager to try the inpen because it’s a digital pen that keeps track of a number of dosing markers including when you took your last shot, how much you took and how much insulin you still have onboard. But when I’d prime the pen, sending two units of insulin into the air, poof, gone, for my one unit injection, I couldn’t do it. I used the pen a week and then sacrificed being sure whether I’d taken my meal time shot for conservation. My Jewish, Virgo practicality just couldn’t let me waste more insulin than I was using. And then I got mad.

If you have type 2 diabetes and dose 40, 60, 80 units for a meal or a day, maybe two units/injection doesn’t seem like a big deal. But you’re still being robbed of probably six to ten units a day. If you have type 1 diabetes like me, and eat a low carb diet, you may only be taking five or six units a day. I take one unit typically to cover a low carb meal. Taking five units of mealtime insulin a day would cost me an additional five to ten units for priming (I typically prime with one unit, sometimes I need two).

I use a Tresiba pen for my basal injection. I take six units of Tresiba every morning. Tresiba is only available in a pen so I waste the priming unit or two. I have no choice. For my bolus, either Fiasp or Humalog insulin, I draw my dose up with a syringe from an insulin pen cartridge. No priming involved. I specifically use a pen cartridge not a vial or I’d be throwing two-thirds of a vial of insulin away at the end of every month.

I don’t know if this wastage was purposely built into the design of insulin pens but I find it hard to believe we can’t create an insulin pen, or similar delivery device, where taking our insulin doesn’t cost us more than the insulin we use.

I’m also surprised I’ve never heard anyone talk about this wastage or bring this matter to the attention of pen manufacturers seeking a solution. I’m curious what you think.

The Lions Clubs International, the largest volunteer, service organization with clubs around the world, held their 41st annual meeting at the United Nations. Throughout the day, they updated members on missions and accomplishments. They have done tremendous work in detecting and treating eye disease in children, in childhood cancer, disaster relief, eradicating hunger and poverty and more.

They have also put a spotlight on diabetes through a joint collaboration with the International Diabetes Federation. An association of 230 diabetes organizations from 160 countries. There is a Memorandum of Understanding between the two organizations to raise awareness of diabetes, make screening more available, as well as education and access to care. It was my honor to be the face and voice of this collaboration, as a member of IDF’s patient advocate group, the Blue Circle Voices.

Highlights: I shared the stats – 425 million people around the world have diabetes. One in three U.S. adults have diabetes or pre-diabetes, and 9 out of 10 people with pre-diabetes don’t know they have it.

Diabetes is not just a matter of insulin resistance (type 2) or not producing insulin (type 1) but also a condition that affects people emotionally: shame, guilt, frustration, fear, stigma.

I shared a service project that took place in Costa Rica last month. A young woman with type 1 diabetes, who’s a psychologist, Daniela Rojas, ran a 3-day adventure camp for children with type 1 diabetes. After every physical feat the kids read an inspirational essay from my book, The ABCs Of Loving Yourself With Diabetes, (Spanish version, El ABC para aprender a quererte teniendo diabetes), that became an open window for them to express and share feelings and fears they never had before. And to realize they are strong outside, and in. This camp is a replicable model of excellence for diabetes camps around the world. I heard throughout the day Lions’ interest in working with diabetes camps.

I received applause when I announced I’ve already applied for my Joslin 50-year medal still three years away, and laughter when I asked if my unruly mane of hair might make me an honorary Lion, well Lioness.

I closed with a story of my father, who when I lay in my hospital bed 47 years ago upon diagnosis, shouted at my cold doctor, “There’s a person in that bed, not just a disease!” Maybe that’s why today I share with health professionals a way to put “Heart-Ware,” the seeing of each other, back into health care.

Above all, I was thrust back into a time when people came together just to do good. Maybe it never left but it’s hard to feel when we are so divided as a nation, as a world. The day was a refreshing and reassuring confirmation that kindness still lives in people’s hearts. And that activism to help one’s neighbor is occurring every day, in small and large communities, through the work of passionate Lions, Leos, Lionesses and Blue Circle Voice members.

My fellow diabetes advocate and friend Christel Marchand Aprigliano was recognized by newly appointed Lions Clubs International President, Gudrun Yngvadottir (from Iceland), for her amazing work influencing diabetes government policy. Rock on Christel! And rock on Gudrun who, having injured herself while skiing a few weeks ago, wasn’t going to miss the auspicious day.