Rare Disease: Zebras Among Horses

By definition, rare disease is a condition that affects less than 200,000 people. An estimated 300 million people worldwide live with some type of rare disease. Over the last decade, the internet has played a critical role for patients living with an “orphan” condition by enabling connections to other patients and clinical knowledge. Similarly, tremendous advances around gene editing and personalized medicine approaches are giving patients and their loved ones much needed respite and hope.

The vast majority of rare conditions are complex, debilitating and often life-limiting. For patients, the journey to diagnosis can be a frustrating and lengthy one. While it can be a relief to understand the cause of one’s pain or disability, the process of accessing treatment can also be stressful. Most therapies are not readily available from the local pharmacy and must come from a specialty pharmacy either via courier or carrier. These therapies are also usually temperature-sensitive and require cooling to maintain effectiveness.

Being on the receiving end of medicine can be an exhilarating experience for a patient. From winning a battle for insurance coverage to starting a treatment journey, there is more than product that arrives in a package. So when a prescription therapy finally does arrive to the patient, there should be no questions about its safety. This is especially true in the case of rare disease treatments which are expensive and not easy to replace. Yet many of these medications arrive at patient homes in damaged packaging, are left outside in extreme weather conditions, or may have experienced a temperature excursion in a hot truck earlier that day.

Without visibility into what a therapy experienced during transit, there cannot be 100% certainty around its effectiveness. Electronics retailers track their packages with great detail and finite alerting, yet lifesaving medicines are often left to chance. And in the case of an issue with the drug, it is the patient or caregiver left to deal with the fallout.

AeroSafe Global has worked to support the safe delivery of medications to patients living with rare disease for many years. Several of our employees have experienced life with rare disease personally or as a caregiver. These experiences encourage us to continuously innovate around protective packaging, seamless monitoring technology, and patient engagement opportunities. Our job is to remove controllable risk from cold chain pharmaceutical logistics while simultaneously fortifying distribution links to reduce controllable risk. We do this for every patient waiting for our orange box so that they know, no matter what obstacles may emerge on treatment journey, we have their backs.