Diabetes Awareness Day | Patient Perspectives
In honor of World Diabetes Awareness Day, this blog features the experiences of two Medidata Patient Insights Board members diagnosed with diabetes.
What is a piece of advice you would give to someone newly diagnosed with diabetes?
Justus: The value of community with other people who have diabetes grows over time. In particular, it has been helpful for me to find other LGBTQIA+ people living with diabetes. It can feel very lonely at first and this solitary experience of diabetes can seem normal over time. It took me from being diagnosed at fourteen until after college to find other people with diabetes.
Also, I suggest taking some time to reflect at different stages of your life what diabetes means to you and how it impacts you day-to-day. Share this with those who you are closest with if you trust them—this doesn’t need to be with everyone. Those people will truly appreciate it and may not have understood your experience before, even if they are very close with you.
Some of the best advice I’ve ever had with navigating health, high medication costs, and life has come from my diabetes community. I’m a huge believer that people with diabetes can do anything. I just ran the Berlin marathon this year. That being said, it was half running and half diabetes management. You need to realize that your body is not like everyone’s; this can be very hard to accept, but in the long run you will have more respect for your body—which is the foundation for success in my opinion.
Phyllisa: Diabetes will change your life, but it isn’t the end of your life—so keep living your best life. I loved traveling and when I was diagnosed, I thought it meant that I wouldn’t be able to go as freely. Diabetes requires more preparation, but I’ve carried diabetes right along with me to the top of the world's tallest building in Dubai to the world’s largest Starbucks in Shanghai.
How has the healthcare landscape changed since you were first diagnosed with diabetes?
Justus: I think some of the biggest things that have changed in the healthcare landscape since I was diagnosed have been, on one hand, the huge increase in the cost of medication, and on the other, the awareness of inequity in healthcare. During the last few years, many diabetes organizations have shifted focus from a cure for diabetes to the very pressing need to advocate for lower cost of medication. COVID-19 has made it even clearer how overlapping conditions, including diabetes and lack of access to high-quality insurance in the US, can be deadly. On the diabetes technology front, some of the most amazing changes have been in the ability for patients to impact that trajectory of policy and technology development. Dana Lewis and the #werenotwaiting movement, which advocated for the faster development of automated insulin pump technology, truly was a game changer for people with type 1 diabetes; that is an incredible example of leadership by patients.
Phyllisa: Since I was diagnosed, access to CGM (continuous glucose monitors) technology for people with type 2 diabetes has improved. Unfortunately, not much has changed for insulin pricing being affordable in the US. I once drove around an entire summer in the South Carolina heat without air-conditioning in my car because I couldn’t afford to get it fixed and also pay $280 for insulin—plus other diabetes-related expenses.
You have the microphone for the world. What do you want to tell the industry and other stakeholders about diabetes?
Justus: Diabetes for those with access to medication, technology, and insurance and to the many people without it are almost entirely different conditions. I know younger, healthy-looking people who are suffering silently day-to-day because they don’t have the energy and diabetes resources to manage this disease. Innovation in diabetes must include financial accessibility if we want to truly change the trajectory of public health. From 2005 to 2016, there were no changes to diabetes treatment targets despite the innovations in medication and technology.1 2 I think this is good news for industry partners because we know that things like Continuous Glucose Monitors and pumps help; we now have the task of getting them to more people.
Phyllisa: Diabetes requires 24/7 attention. There’s not one time I get to eat or drink without wondering how it will impact my blood sugar. Diabetes management is continuous, stressful, and exhausting. Please work on eliminating the financial burden that comes along with such as mentally exhausting condition. Requiring this continued attention to care, is why there’s a strong connection between depression and diabetes.
About the Patient Insights Board
The Patient Advocates on our Patient insights Board work closely with the Medidata Patient Cloud team in reviewing applications and project initiatives to provide a comprehensive patient perspective. Medidata’s Patient Insights Program infuses the patient perspective into the software development life cycle to create technical solutions that improve the overall patient experience in clinical research operations. Learn more about each member’s patient experiences and advocacy journeys here.