Amy Barley: Access to Life-Changing Diabetes Care

Amy Barley lives in Maryland and works as a digital marketing professional for the Maryland Health Benefit Exchange, where her work directly intersects with her personal experience. Diagnosed with type 1 diabetes at age 10, Amy has spent more than three decades managing a chronic condition that requires constant vigilance. Her journey with diabetes has profoundly shaped her understanding of health care coverage, access, and disability rights – and even influenced her passion for data-driven digital marketing.

Amy’s diagnosis came suddenly during a family vacation in Ocean City, Maryland. She experienced dizziness, frequent urination, and extreme thirst, yet didn’t know the signs of dangerously high blood sugar. “I started losing my eyesight, and it was really bad – to the point where I felt like I was blind or going blind,” Amy recalls. She was rushed to the family doctor, who immediately sent her to the hospital, where her blood sugar measured over 700. “I should have been in a diabetic coma at that point,” she said.

During her month-long hospital stay, Amy faced the reality of lifelong self-management of diabetes. “Okay, this is with me for life. I’m going to have to do this, whether I like it or not,” she remembers thinking. For 10-year-old Amy, this realization came with a sense of loss: “Part of me will never grow up because your childhood feels stolen in that sense.” Being diagnosed so young shaped not only how Amy navigates the world, but also how she shows up in it. While part of her childhood was cut short, she believes it also left her with a sense of openness and curiosity that never fully faded. She describes herself as someone whose spirit remains youthful – approaching challenges with optimism, empathy, and a naturally upbeat, approachable energy.

Over the years, Amy learned to track and analyze her glucose data meticulously. Monitoring trends, spotting patterns, and adjusting her insulin and diet accordingly became a daily practice. “Analyzing my blood sugar readings taught me to look at numbers, understand patterns, and make decisions based on data,” she explains. That experience sparked a natural connection to her professional work: “In digital marketing, I do almost the same thing – analyzing website traffic, SEO performance, search intent, user behavior, and conversion metrics to make data-driven decisions that improve user experience and campaign effectiveness.” Managing diabetes taught her patience, critical thinking, resilience through trial and error, and the power of actionable data.

Amy has witnessed firsthand how diabetes technology has evolved – and how profoundly it has changed daily life. When she was diagnosed, insulin pumps and continuous glucose monitors did not exist. Managing diabetes meant finger-stick blood tests multiple times a day, rigid insulin schedules, handwritten logs, and frequent guesswork. Blood sugar swings often went unnoticed until symptoms became severe, making daily life unpredictable and physically exhausting.

Today, Amy uses an insulin pump and continuous glucose monitors (CGMs) that leverage advanced algorithms and predictive trend analysis to provide near real-time data, alerts, and trends. These tools allow her to anticipate highs and lows, make proactive adjustments, and sleep more safely at night. “The difference is night and day,” she says. “You move from constantly reacting to actually being able to plan and live your life.”

Yet, she remains keenly aware that access to life-saving diabetes technology is not equal. This awareness fuels her passion for expanding access to care regardless of income.

Her professional experience reinforces these insights. While her current role with the Maryland Health Benefit Exchange provides strong health insurance coverage, her earlier 20-year marketing career across industries such as nonprofits, hospitality, education, and financial services exposed her to inadequate coverage and high out-of-pocket costs. “Every three months, I was paying a couple thousand dollars out of pocket because the insurance was so inadequate,” she said. Today, even with a lower salary in the public sector, better benefits provide financial stability and peace of mind.

Amy’s perspective on diabetes has also evolved over time. “I used to get offended when people referred to my type 1 diabetes as a disability,” she explains. “It is a disability because there are some days where it’s just completely debilitating.” She is particularly concerned about the increase in prior authorization requirements, which often delay access to necessary medications and devices. “I have spent hours, sometimes weeks, appealing these decisions,” she says. “Living with a chronic condition is already a full-time job.”

If Amy could speak directly to lawmakers, she would emphasize viewing health policy through a disability rights lens. “Diabetes is a disability under the ADA,” she says. “Delays and denials for medications recreate inequities that the ACA aimed to eliminate. Disability is universal and can happen at any point in life, to any one of us.”

For Amy, health care policy is never abstract – it directly affects whether people with chronic conditions can live stable, dignified lives. Her lived experience informs every decision she makes at the Maryland Health Benefit Exchange. Through her work, she helps ensure that digital marketing initiatives prioritize access, equity, and usability, so others with chronic conditions have the same opportunities for care and stability that she fought to secure.

Over time, Amy came to see that the same skills required to manage a chronic condition – analyzing data, recognizing patterns, adapting through trial and error, and planning for risk – are the same skills needed to improve the user experience of many health care systems. Whether reviewing glucose trends or digital engagement data, her focus is the same: reduce uncertainty, improve outcomes, and design systems that work for real people navigating complex decisions.

“I approach my work knowing that the policies we implement aren’t just theoretical – they determine whether someone can manage their condition, live safely, and maintain a life that isn’t constantly overshadowed by fear of losing health coverage.”

The Maryland Health Benefit Exchange (MHBE) is responsible for the administration of Maryland Health Connection, the state’s official health insurance marketplace, under the Patient Protection and Affordable Care Act of 2010 (ACA). Their mission is to improve the health and well-being of Marylanders by connecting them with high-quality, affordable health coverage through innovative programs, technology and consumer assistance.