Maine Voices: We need low-cost insulin and diabetes support networks

My pancreas is completely useless. Or soon will be. The precious hormone that this organ makes to control blood sugar, insulin, is barely produced. I am now part of an elite club of adult type 1 diabetics, representing 1.4 million adults or 0.42% of the US population, according to the CDC’s National Diabetes Statistics 2020 report.

The diagnosis of such a disease for any new patient is filled with mixed reactions – shock, confusion, dread, frustration. For those with predisposed conditions, such as having a relative with the disease, this might be less shocking. Nevertheless, the old way of life of each new patient is upset and the need to adapt to life with T1D is necessary for its survival.

Adjusting can be difficult as counting carbs, administering insulin, and testing blood sugar can be mental hurdles, not to mention the new experiences of high and low glucose levels resembling an emotional and physical roller coaster. but accepting that the old way of life, where we could freely eat Oreos whenever we wanted or exercise without mathematical calculations, is pretty much over. Parents of newly diagnosed T1D children often experience the same stressors.

For some of us at the elite club, the cause of T1D was seemingly random. It turns out that steroid-induced diabetes is not unheard of, it’s rarely talked about. A prescription for prednisone temporarily relieved my debilitating back pain from bulging discs, but it also made me drink heavily. For three months I drank about three gallons a day and lost 10 pounds. I had a short period of uncontrollable body chills, vomiting and fatigue. A visit to the doctor revealed that my hemoglobin A1C (a blood test that measures average blood sugar over the past 3 months) was over 14%. The normal range is below 5.7%. The meter reads “HIGH”, which usually means 500 mg/dl or higher. Normal blood sugar for a non-diabetic is 90 to 110 mg/dl. Fortunately, my doctor immediately prescribed an insulin infusion and fluid. Insulin is now my survival ingredient.

Now, three months after diagnosis, the novelty of the experience, the trial-by-fire of self-administered medications, and the change in routine are all but gone. My shopping list has changed. My new continuous glucometer that I wear helps with decision making. I am by first name with my insurer and my pharmacist. I have finally found some level of blood sugar stability, although I now face a new and horrifying challenge. Emotions have hit hard recently. I have a family support network that has been great.

Yet I feel alone in my experience. The physical events of hyperglycemia and hypoglycemia also cause a flow of emotions. I constantly apologize to my husband for being too snappy, a side effect of high blood sugar. I researched diabetes support groups in the area in hopes of building relationships with people with similar experiences to me. The two or three hospital-run groups I’ve found are short-lived and take place on weekdays when I’m working, so I’m considering forming an informal support group on social media, with occasional coffees and outdoor encounters.

I am grateful to have insurance and the financial resources to purchase the components that ensure my comfort and survival. I can’t imagine not having the resources to pay for the insulin. The drug is estimated to cost some families $6,000 a year. Fortunately, in Maine we have a $35 per month cap on insulin. This cap is not available nationwide, but a new bill called the Affordable Insulin Now Act aims to change that. The bill was introduced in the House of Representatives. If you support her, please write to your District Representative and say so!

My pancreas is useless, but I have insulin injection, so I’m one of the lucky ones. Anyone with this condition deserves a break; Reducing the cost of insulin is one of the main ways to help ease financial and emotional hardship.

— Telegram Special

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