As I stood outside Eli Lilly on September 30^th at the #insulin4all demonstration, I felt sad, angry, and baffled with a mix of emotions that may not even have a name. I watched my 29-year-old diabetic daughter Karyn, with her blood sugar in the 300’s, fight for her right to life, her right to insulin. At the same time, I saw dozens of others fighting for the same. I then felt unity, strength and determination that this battle will be won.

More and more I am hearing of people that are amazed, shocked or just did not know about the situation. A drug that is cheap to make and saves lives is being kept from those who need it because of the greed of Eli Lilly, Novo Nordisk and Sanofi. That is why we were all at Eli Lilly recently and, as a mother of a child reliant on exorbitantly expensive insulin for survival, that is why I continue to speak out.

I’ve been the mother of a type 1 diabetic for 17 years. My daughter was diagnosed at age 12. It didn’t run in our family. It was the last thing I could have imagined happening to my healthy, vegetable eating, active little girl. We were coming home from vacation and she needed to stop frequently to visit the ladies room. She would return to the car guzzling a Powerade or water. I had heard the symptoms of type 1 diabetes: frequent urination and unquenchable thirst. I felt panic but then I thought “there’s no way”.

My motherly intuition was taking over, so I immediately had her blood sugar tested. It was in the high 400’s. I felt numb and tested again hoping for a mistake. It was worse. 500+. We headed to her pediatrician only to see another high reading. The next thing I knew we were at the hospital and my child was diagnosed with type 1 diabetes. I was definitely in denial. It had to be a fluke.

But 17 years later that “fluke” continues. Karyn did not do anything wrong. She does not deserve to have diabetes. Of my five children, she was the healthiest eater by far. Yet even today, people still say to us, “just stop eating sugar.” If only it were that easy. We’ve battled 4 rounds of diabetic ketoacidosis (DKA), which is extremely life threatening. She has also had multiple low blood sugars resulting in her passing out and me calling 911. Not to mention, more anxiety and fear than I can possibly convey.

The first few years of her life with type 1 diabetes were physically and emotionally draining, but at least we had good insurance. When she rolled off of her father‘s insurance everything changed. Suddenly it cost $100 for a single bottle of insulin. The next year it was more, and that trend continued every year until her monthly insulin cost had soared to approximately $1300. That is only for the insulin. There are other necessary supplies as well.

Today, it takes everything she makes and a large portion of what her husband makes just to cover the costs of diabetes supplies and treatment. They live here with me, upstairs in my bonus room. So, they have not experienced a normal married life, and children are nowhere in their near future, if at all.

Those who are not yet affected by type 1 diabetes, either themselves or a loved one, have no idea what this life is like. I say “yet” because both types of diabetes are rapidly rising. Karyn went to a very large high school. At that time, she and one other student had type one. My youngest son graduated two years ago from a much smaller school. His small marching band alone had five type one diabetic members.

I have attended the #insulin4all demonstrations for the past two years. The first time, I stood in amazement as I looked at the enormous campus that Eli Lilly owns, which occupies all four corners of that busy city intersection. Both times it made me sick to hear about the unbelievable salaries that Eli Lily’s executives make, the lifestyle they must live, which my daughter’s disease is helping to pay for.

I am not normally an angry or bitter person, but I am a mother who will fight for her children to the end. It infuriates me to tears to think that my child, or anyone’s child, has to pay extortionate prices for a medication that keeps them alive, especially a medication that is very inexpensive to manufacture. That is why I am so thankful for T1International’s tremendous efforts to make this part of the nightmare go away. Their fight to bring this greed to the surface and put an end to this cruel struggle for people with diabetes will save lives.

People are suffering and dying while the three insulin manufacturers make billions in profit off them. To everyone that is taking a stand and getting this crucial message out there, I can’t thank you enough. For me, that’s what this demonstration was about: exposing the truth, committing to making things right and saving lives. Something needs to change before we lose another life simply because people can’t afford the outrageous price of insulin. Insulin really is oxygen to someone with type 1 diabetes, and my daughter is my life, so I will not go quietly without a fight.