Health Insurance – Pulling Back the Veil


For most people dealing with complicated insurance coverage is not a pleasant topic to discuss. People outside the type 1 diabetes (T1D) community recognize living with T1D is expensive, but have no idea that the cost of insulin for a year is over $10,000 per person. I first started following Beyond Type 1 in their battle to help Esme get a continuous glucose monitor (CGM). Esme was lucky, she was able to get coverage in her final appeal. Unfortunately, I believe Esme’s story is more common than we think.

For every Esme who received their CGM, I believe there are many people uncertain of how to proceed and ultimately get stuck in the appeal process. 95 percent of denied insurance claims are never appealed1. I have yet to meet a person living with T1D who has not had an issue with cost or with access to the prescriptions prescribed to them by their healthcare team.

While we have many stories, we have an opportunity to substantiate the issue for all the people who should be engaged in the conversation. This group of people should include our employers, insurance companies, healthcare provides and the companies who manufacturer the medications and devices that keep us alive. I have launched No Small Voice to help us begin to prove this point.

Several weeks after my daughter, Malia, was diagnosed with T1D, I went to fill our prescription for test strips. After an excruciatingly long wait, the pharmacist finally called my name. He said he was sorry, but test strips were not covered from our insurance for another two weeks. We were out of test strips, so I paid $100 for 50 test strips, and left. I was certain the pharmacist had made an error. How could our test strips be denied?

I was following the endocrinologist’s directions exactly, so I called our insurance company. After a lifetime of elevator music, I finally was able to talk to a person. I was informed that I was only allowed six test strips a day. I calmly explained that our endocrinologist had recommended we test my daughter’s blood sugar at least 10 times per day, and if she was low that we would need to give carbs and recheck every 15 minutes. Our prescription was for 10 test strips per day. I continued that we were having a lot of lows, especially at night. Not to mention how difficult it can be to get a little dot of blood in the tiny spot on the test strip after not sleeping for days. Their response: “You are only covered for six test strips a day.”

Running out of test strips has not been a one-time occurrence, and is not a struggle just for my family. Standing in line at the pharmacy, I have talked to people having the exact same challenge. One father was rationing his test strips. He was only going to be able to check his son’s blood sugar twice a day until he was able to get more test strips covered by his insurance plan. I began to recognize that access to prescriptions was not going to be easy, and we have great insurance. In the two and a half years since my daughter’s diagnosis, I have a lot of stories about the dark side of diabetes.

Malia’s insulin pump was denied; our insurance company would only ship four CGM sensors at a time; test strips were denied for no apparent reason; there were long wait times for questions; difficulty in understanding costs of medical care based on changing insurance plans.

With insulin prices in the news, the cost of type 1 diabetes has become a hot topic. I have had a number of friends call, wanting to offer some support. The intent is great. The conversations go something like this: “WOW! Can you believe how much the price of insulin has increased? I was watching the news, and a vial of insulin costs 200% more and is still going-up. So you use what, 4 vials of insulin a year?” My response: “We use almost 4 vials of insulin a month, so it costs over $10,000 dollars a year just for insulin.” Stunned silence … Malia’s medical expenses for last year were over $44,000 when including our out-of-pocket expenses combined with the coverage from our insurance company.

Yoda had a saying, “Do or do not, there is no try.” This is a motto that resonates strongly with me. I am a mother of five daughters, work a full-time job, drive a 10-passenger van frequently filled with kids on their way to various activities, check my daughter’s blood sugar through the night and manage her small pharmacy. I am also a math geek. I use numbers and data to tell stories, sometimes I tell very simple stories based on very complex data. I have launched a company, No Small Voice, because we have an issue that I am passionate to improve.

After I check my daughter’s blood sugar at 3 a.m., I work on No Small Voice. There are so many opportunities to improve the cumbersome and complex processes we go through each day, and to offer encouragement to other people facing the same challenges. My goal is simple. Use data to track and improve processes—ensure that 95 percent of people appeal their denied insurance claim by recognizing it is the fight in them that matters.

Together, we will improve patient outcomes through access to medications and medical devices prescribed by endocrinologists and doctors who know us. We will also tell data-driven stories to employers, insurers and healthcare providers. How do we get there? I believe more transparent conversations associated with the requirements for the appeal processes and costs for prescriptions and medical devices will allow us to create change. My goal is to empower you to find your voice and to continue to push forward.

As I meet with people outside of the T1D community, including conversations with employers who fund insurance coverage, the response has been consistent: we are not certain how much of an issue access and costs are for the T1D community. It is our opportunity to take our stories and transform it to data that can make a difference. Visit No Small Voice to learn more.

Read Insurance – Navigating Denials.

WRITTEN BY Brenda Hunter, POSTED 01/19/17, UPDATED 08/04/23

Co-Founder of No Small Voice, Brenda Hunter, has spent the last 16 years working at Hewlett-Packard Company where she has led a global team focused on reporting and analytics. During the six-month approval process for her daughter’s insulin pump, she recognized the lack of information available concerning insurance. She is rapidly becoming an outspoken voice to help patients make more informed decisions about their care. As the co-founder of NSV, her goal is to provide information about insurance, make the process more transparent and available to all patients.