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Sometimes when we hear the word diabetes people think that acquiring the disease is the fault of the person living with diabetes. In fact, many Americans living with Type 1 Diabetes have no idea why their pancreas failed and stopped them from producing the insulin need in order to live. Everybody on earth needs insulin, it’s a hormone that breaks down sugars in our bloodstream and is absolutely necessary to sustain a person’s life.

Recently, I’ve decided to be more transparent on my blog and the one thing that effects everything I do day-in-and-day-out is related to diabetes. Let’s be clear, I don’t actually have diabetes nor am I pre-diabetic, but it controls every action I make.

African American Family - T1D thoughts and connection

My Personal Connection to Type 1 Diabetes

Consequently, diabetes runs my household because I live with two Type 1 Diabetics (T1D): my husband and my daughter. Their bodies have stopped producing insulin. Every day is a constant reminder that we have to constantly be aware of their blood glucose levels. I have seen the effects of highs and lows and it’s extremely troubling. At one point, I witnessed my husband suffer from multiple seizures related to diabetes complications. After the T1D diagnosis of my daughter I had and sometimes still have many sleepless nights.

Why Share Such A Personal Experience?

My goal in sharing my story is to shed some light on Type 1 Diabetes. The people who suffer from this disease should not have to suffer from the outrageous cost associated with this disease. There has been an over 1,000% increase in the price of insulin since the 1990s. – Congress Woman Janice D. Schakowsky.

Not only is insulin expensive, but the other diabetic supplies are astronomically-priced as well. After the diagnosis was confirmed, for my daughter, I went to the hospital pharmacy so I could take her home and my co-pay for her insulin and diabetic supplies was over $300. At the time, she had been in the hospital for three days and my husband and I had to take turns sitting in the hospital with her because her twin sister was not able to stay overnight with us. I just wanted to go home so I didn’t care about the price.

T1D Prices vs. Life

Since then, the price of insulin and her diabetic supplies have controlled my financial choices in life, and dictated how long she and her sister can attend summer camp. Which vacations we can take. Whether or not she gets to take classes at Johns Hopkins Center for Talented and Gifted Youth where she was accepted. What food we eat. What extracurricular classes they take etc. The fact, that I have two diabetics battling these cost is always on my mind. We have great financial habits and stick to our budget, but still, the strain is present. Cost related to diabetes add us, co-pays for regular doctor’s visits are sometimes over $100 with our private insurance. Can you imagine life for many T1D who are not as fortunate? The disease is hard enough to constantly manage without worrying about the related pharmaceutical costs.

“Our insulin supply chain is broken, unfair, and dangerous.” – Dr. Powers

According to testimony in the hearing below “1 in 4 people ration their insulin [because of cost].” – Ms. DoGette. Taking insulin for type 1 Diabetes is not optional, it’s critical.

Watch the Hearing Related to Type 1 Diabetes Costs

HEARING ON “PRICED OUT OF A LIFESAVING DRUG: THE HUMAN IMPACT OF RISING INSULIN COSTS

  • Date: Tuesday, April 2, 2019 – 10:30am
  • Continuations: Tuesday, April 2, 2019 – 10:30am
  • Location: 2322 Rayburn House Office Building

The Subcommittee on Oversight and Investigations of the Committee on Energy and Commerce will hold a hearing on Tuesday, April 2, 2019, at 10:30 a.m. in room 2322 of the Rayburn House Office Building.

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