My name is Kristen and I’m from Plymouth, Massachusetts. I have two children, a 9-year-old son and a 4-year-old daughter. They both have autism spectrum disorder and my daughter also has type 1 diabetes. Struggling to cover expensive treatments and supplies while trying to secure affordable, quality health insurance has been a relentless challenge, one that is unfortunately all too familiar to families of someone who has type 1 diabetes.
For the last two years since her diagnosis, my daughter had been on Humalog and Lantus, which are respectively short-acting and long-acting forms of insulin. She recently transitioned to an insulin pump and is now only on Humalog; however, we have simply traded one expensive medication (Lantus) for an expensive device and associated supplies (the pump). Even after our primary insurance and secondary insurance, we still pay over $100 per month in copays and added costs for insulin and her continuous glucose monitor and pump devices.
Having worked in the health care sector at Johnson & Johnson for nearly 6 years, I’ve had a firsthand view of how large corporations strategize. After spending the majority of my time there in patient marketing, followed by the quality/regulatory/compliance department, I know that while many employees there feel they are helping people, profit is the guiding mission.
When my then 2-year-old daughter became extremely ill, spending a week in the pediatric ICU and endocrinology unit at Boston Children’s Hospital after being diagnosed with type 1 diabetes, it quickly became evident how expensive of a disease type 1 diabetes is for a family. I remember walking into the hospital’s CVS Pharmacy like a zombie. When I saw the breakdown of costs for her prescribed medications and supplies, I almost fell over looking at the monthly total of $250 in copays! And that was under a supposedly good health insurance plan. From that moment on, the seemingly endless pursuit of affordable health insurance that would help reduce the cost of medications would consume me, impacting career plans and my personal life.
I have spent the last few years switching jobs to try to find one that gives us insurance coverage that will help us to afford my daughter’s insulin and medical supplies. I finally found a job in a school system where the coverage is sufficient, but I am now extremely worried about a potential furlough or layoff due to the COVID-19 pandemic. The loss of insurance and income would put us back in the horrible position we were in before. That’s enough to lose sleep over, but I’m also already sick with worry about my daughter’s future when she ages off of our insurance plan. The high cost of prescription drugs she needs to stay alive has not only affected my own path, but I worry about how it will determine the opportunities she has in her life and career.
As an autism mom and diabetes mom, I would do anything for my children. But I shouldn’t have to fear whether my daughter will be able to access her medicine in the future. I shouldn’t have to constantly worry about the price of her insulin increasing yet again. And my daughter shouldn’t have the opportunities available to her be affected by the greed of companies’ price gouging of her medication. We need change now, and that means leaders who are willing to prioritize the sustainability of families like mine over the profits of pharmaceutical companies.