ONCE UPON A GENE - Episode 099 - Strength and Inspiration Found Through Rare Disease for Advocacy and a Patient First Movement with CEO of Optime Care - Donovan Quill
Donovan Quill has made it his personal mission to help patients who suffer from an orphan disorder that has affected his entire family, Alpha-1 Antitrypsin Deficiency. His advocacy efforts have led to his role as the CEO and President of Optime Care, a nationally recognized pharmacy, distribution and patient management organization. Donovan is also the host of the Rare Voices podcast.
EPISODE HIGHLIGHTS
Can you tell us about the Alpha-1 Antitrypsin Deficiency?
Alpha-1 Antitrypsin Deficiency is a genetic disorder where the body doesn't make a protein that protects your lungs or liver from deterioration. Most of my family suffers from the lung effects of the disease, but my father had both the lung and liver related effects of the disease and passed away from liver failure. Most of my aunts and uncles passed away in their 40's from lung and liver components of Alpha-1 and my father passed away at 69 because of his treatment and the care model he managed and lived.
What was the defining moment that shaped how you run Optime Care?
My father had a bright light about him, was education focused and always wanting to learn and that rubbed off on me, learning as much as possible about the patients we serve and the disorders we work with. My parents instilled traits in me to do the right thing, make sure people are cared for, and treat everyone with respect. Diagnosis day is something my family experienced several times and it helps me to think about how patients react to and experience diagnosis and all that they go through. What rare patients go through on a daily basis has shaped what we are as a company, how we develop care plans and treat patients.
What is the most meaningful thing that has happened since starting your company?
I say the greatest metric we have is the relationships with our patients and the success of the company. The individuals who support the mission get letters from patients, invites to personal events like birthdays, holiday dinners and celebratory milestones. Patients stop in to see us when they're traveling in the area to meet their care coordinators and pharmacists. That's what has been the most rewarding for me, seeing the impact the care coordinators, pharmacists and nurses have on patients. It's a special, magical experience.
Can you talk about the Rare Voices Podcast?
Everyone has a voice and to really understand the rare disease world, you have to look at the patient perspective and also understand there's a lot that goes into bringing a drug to market, getting a drug covered or building a care program. So many people become their own advocates and push to bring about change in the world of rare disease, so we've found people to tell their story on the podcast. People aren't running away from their story, they're not hiding their story- they want to tell it and there's a mission behind it. The more we can get people to tell their story, the more awareness we can get around disorders and diseases that affect only a small number of patients. We want people to be aware of rare diseases that need more attention so we can get research, development and resources for finding treatments and cures.
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