The term “health equity” may seem abstract until we connect it directly to personal experiences. Since being diagnosed with diabetes, I have encountered many examples of health inequity that range from access to high quality care, having knowledge of affordable medical devices, and simply being listened to by my healthcare providers.

When I was first diagnosed with diabetes 10 years ago, it was an uphill battle to get the diagnosis. I was experiencing all the classic symptoms of hyperglycemia, but rather than checking my glucose levels in the office, my new primary care physician recommended that I drink Gatorade to correct an electrolyte imbalance.

The following week, I returned because my symptoms drastically increased and I had passed out in my bathtub. At that visit, my lab results were back, and they showed that my blood sugar was close to 400 at my previous visit. I didn’t understand what any of that meant, the word “diabetes” was never mentioned, but it was clear to me that I was not getting the highest level of care. I was diagnosed with diabetes at a local hospital after going there for treatment.

When I was discharged from the hospital six days later, the staff provided me with a bag of supplies and instructions on how to administer insulin. Only one nurse took the time to show me how to give myself an insulin injection and I remain ever thankful to nurse Pat to this day.

As night came upon me, so did the time to take the long-lasting insulin. I opened the bag from the hospital and inside there was a glucometer, but no strips and there were two insulin pens, but no needles. I was surprised.

Clueless as to what to do next, I drove to a local pharmacy and explained that I needed needles and test strips. I purchased the needles, but I couldn’t afford $89.99 for 50 strips and because no one recommended a different brand, I didn’t know that I had that option. My financial status and knowledge of alternative solutions were a significant barrier for me obtaining adequate diabetes treatment.

When I realized, after seven years of being diagnosed, that my A1C was consistently increasing although I had restricted my diet and increased my exercise (the two things preached to people diagnosed with type 2 diabetes), I inquired about getting type 1 antibody testing. My endocrinologist didn’t see the need for antibody testing and instead increased my oral medications.

Months later, during Diabetes Awareness month in 2019, at a workshop I was facilitating for physicians from the MENA (Middle East and North Africa) region, a couple of endocrinologists suggested that I get antibody testing because my diagnosis story sounded more like Latent Autoimmune Diabetes in Adults than T2D. That month I asked for antibody testing again and was denied again.

At every 3-month visit afterwards, I asked about antibody testing and was refused even after getting a second opinion. After experiencing rapid weight loss from DKA for the second time in my diabetes journey, I eventually sought help from my OBGYN. After listening to me, she agreed to order type 1 antibody testing. Within 10 days, it was confirmed that I am positive for two type 1 antibodies.

Upon receiving the results my endocrinologist tested my c-peptide levels for the first time and my insulin production was severely low. It was an exhausting battle that lasted nearly two years because my healthcare providers wouldn’t listen to me.

This is what health inequity looks like. In addition to physical harm, it causes distrust in the healthcare system. My advanced educational background, holding a PhD, couldn’t save me from experiencing health inequity. My family history of being the lone person with diabetes couldn’t save me from experiencing health inequity. Getting a second opinion couldn’t save me from experiencing health inequity.

My experience with health inequity almost killed me, twice. But I am just one woman with many experiences who finally feels hopeful that something is being done to address health inequity in the diabetes space. The T1D Exchange Quality Improvement Collaborative (QIC) has done research that explores health inequities in T1D and has created some materials to help address this pervasive issue.

For more information about the 10-point plan of action and to read recent publications, read the Breaking Down the Science series: T1D and COVID-19 and All About the QIC.