Happy Chronic Disease Day!!

Chronic Disease Day is tomorrow, July 10th! Chronic Disease Day is a day that brings together state and local governments, advocacy groups, and communities across the country to recognize and support the millions of Americans living with debilitating chronic diseases.

This day is especially important to us as we are an organization that represents and is composed of young adults living with chronic and rare diseases— an often overlooked subgroup within the chronic disease patient population.

The burden of chronic disease in adolescence is increasing as more chronically ill children survive beyond the age of 10. Now, conditions once seen only in young children are being seen beyond childhood and adolescence. Individuals diagnosed during or prior to young adulthood face a lifetime of illness, the impact of which has not received adequate attention. It is estimated that there are approximately 20 million young adults living with serious, lifelong conditions.

Limited Support for Patients Facing a Lifetime of Illness

  • The financial burden of a lifelong illness is massive, yet there are very few reliable systems in place to support these patients, many of whom are left to their own devices as they fight to survive and keep their heads above water.

  • Often, these patients struggle to find insurance <br>coverage that adequately meets the needs of serious, continuous illness. A report published by Harvard T.H. Chan School of Public Health states that approximately nine in ten seriously ill patients (91%) have health insurance coverage, but that “37% of these patients report having used up all or most of their savings dealing with their health and medical condition… and 23% report being unable to pay for basic necessities like food, heat, or housing.”

  • A large portion of chronically ill persons live under the poverty line, trying to make do with what little they get from social security, a system which unfortunately keeps these individuals from establishing much of a savings or any other financial safeguards for their future. Furthermore, because of the unpredictable nature of their illness, many of those living with a chronic disease are unable to pursue career or higher education opportunities that would provide them with the financial independence and security they desperately need.

Chronic Disease Amidst a Global Pandemic

These are challenging times for all of us. For those living with a chronic disease, many of whom are immune-compromised, this time can be especially frightening and can make managing their health even more difficult. Yet, while these individuals are considered vulnerable and at a higher risk for serious illness from Covid-19, they are also a source of strength and wisdom for the rest of us as we try to adapt and cope with the changes caused by this global pandemic. Many of these individuals have been inadvertently prepared for this pandemic due to the nature of their chronic disease. Being isolated and figuring out how to function and stay in touch with the rest of the world from home, keeping an emergency stock of food and supplies, and adjusting to ever-changing conditions are norms for many individuals living with a chronic illness.

This year, our goal is to recognize the strength of the millions of disadvantaged chronically ill and disabled patients who are trying to navigate life—and this unprecedented pandemic—with a chronic medical disability. We also want to bring awareness and understanding to the population at-large and inspire everyone to be cautious and mindful of their decisions during this difficult time.