More than a Resource for Rare Disease

More than a Resource for Rare Disease

Over the course of my 14+ years in healthcare I’ve had the tremendous privilege of spending most of my career in the rare disease space. During this time I’ve had the opportunity to visit some of the premier medical facilities in the nation treating some of the most rare childhood diseases.

I’ve had the honor of meeting patients and speaking with families impacted by these diseases. Every time I have an opportunity to learn from these amazing individuals, I try to bring something back with me that will enhance their experience with our support services. Though I am no clinician, and cannot take away the pain and suffering that many face on a daily basis, there are a few things I (we all) can do to positively impact the lives of people living with rare diseases.

The first, and most critical, lesson I’ve learned is that it is imperative for our reimbursement and clinical HUB support team to understand the journey that these individuals have endured. We receive our program enrollments, but that fax doesn’t tell their story. There is an individual, a family, an entire support group behind that enrollment. Often within rare disease diagnoses, the actual diagnosis is reached upon exclusion of many other potential indications. This means that the patient has more often than not had to try/fail countless other treatment options with little to no therapeutic relief prior to coming to us. This understanding must impact every phone call, every touchpoint, and every service model we implement. Sympathizing with the individual and their family’s journey, and relating on some meaningful level is the inspiration behind what we do every day.

The second most impactful lesson that I’ve learned from my time working in the rare disease area is that a rare disease doesn’t just touch the life of the individual living with it. It impacts the entire family. The mental, physical, and financial burdens that can often be associated with caring for individuals with a rare disease is far-reaching and can be exhausting at best…. and devastating at worst. While I’ve listened to families torn apart by living with rare disease, I’ve also witnessed the pure joy and relief of a family finally being able to find “normalcy” in their day-to-day life.

All of these things come with the territory of sharing in the rare disease space. We need to understand these things. We need to put ourselves in the shoes of a mother, a father and loved ones caring for a patient with a rare disease and then to realize that their journey may have included prior failed treatments and long periods of uncertainty before coming to us. Once we are able to somewhat comprehend the journey (I say “somewhat” because unless you have truly endured, you can never fully comprehend), then we can understand what it means to be part of the care team. And that’s what we must be. We must be more than “customer service”. We must be more than a “resource”. Simply, we must be the very best in what we do…for them-- because they demand we be and they deserve it from us.