Until I was around 12 years old, I was considered a generally healthy kid, with minimal encounters with the doctor apart from the occasional check-up. It was not until early 2021 whenI learned I have a condition called rheumatic heart disease. Suddenly, I was thrown into a brand new world where chronic illness was part of every facet of my life. Over the past five years, I've learned relatively quickly that medical advancements first begin with healthcare accessibility.
Encountering My First Barrier to Access
I still remember the first time insurance refused to pay for something that was medically necessary. It happened about three months following my initial diagnosis, when my doctor decided that I needed a pulmonary exercise stress test to assess my heart and lung function. However, after completing the test, my family learned that our insurance was not going to cover the costs associated with this test. I remember my parents spending hours trying to get the test covered, and even brought up the situation to my doctor. Although I do not remember the outcome of the situation, the reality of high healthcare costs became apparent to me. Over time, I began to understand that the high cost of healthcare is a widespread issue that not only makes it inconvenient for chronically ill people to access treatment, but also can cause irreversible damage.
Rheumatic Heart Disease: A Disease of Inequality
When my doctor first mentioned rheumatic heart disease to my family, none of us had ever heard of the condition. After doing some research, we would soon learn that the incidence and severity of rheumatic heart disease is directly correlated with barriers to healthcare access. Generally, rheumatic heart disease occurs as a result of an untreated strep infection. When people don’t have access to affordable healthcare, they often decide against trying to obtain treatment for medical issues, including bacterial infections. In the case of a strep infection, not being able to obtain treatment increases the chances of that person developing rheumatic heart disease. In my case, my doctors believe that my initial strep infection was asymptomatic, but having better healthcare access and awareness would have made my condition easier to manage, since the long phone calls with insurance have added a significant amount of stress onto my family.
Rheumatic heart disease is a prime example of the harms that occur due to inequitable healthcare access. While the condition is considered rare in the U.S., it disproportionately affects those in rural or other areas with unequal access to care. In severe cases, damage to the heart may be so significant that open heart surgery is needed. This introduces another barrier in which life-saving treatments such as open heart surgery could potentially be inaccessible due to delays in treatment, access to care or high medical costs.
Why Youth and Patient Voices Matter
As young people with chronic illness, we feel the impact of healthcare policy firsthand, not as numbers or statistics, but as real people whose symptoms limit our everyday lives.
American Heart Month has always been about raising awareness for people with heart disease, but for awareness to have impact, we need action. This February, I urge both lawmakers and citizens to reflect on the importance of understanding the impact of heart disease, and to advocate for policies that will support chronically ill people. When patient voices are heard, healthcare systems will start working for the people they serve.