Introducing Rare Voices
The wise path to a fulfilled life for patients with rare and orphan disorders
It’s usually not too hard for most people to think of their father’s voice. When you think of yours, he may be praising you or maybe he’s correcting you.
For me, my father’s voice sounds like gratitude. And not the hashtag gratitude that you see on the internet. But a deep, real sense that each day is a gift.
That’s because that feeling was a reality. He, along with many of my other relatives, inherited a condition called alpha-1 antitrypsin deficiency. It leads to serious lung and liver disease.
If you haven’t heard of it. You are not alone. It’s what doctors called, “rare.”
My father held the hands of his mom, brothers and sister as they passed away — just young people in their 40’s. So each day We were together was a gift.
Eventually, our gratitude was converted into action. Alongside my father, we became active in the alpha-1 patient community. We saw that there were others who were demanding their voices to be heard.
With a drug therapy and the efforts of patient–centered health management team, my father was able to live 10 years longer than his brothers and sisters. In 2006, my father received the gift of life of a double lung transplant. Because of that care, my father got a second lease on life; he was able to see his sons graduate from college and get married. He experienced the love of five grandkids. My dad and I talked nearly every day for twelve years and continued our fight for the alpha- one community together.
We want to bring you the voices of people like my father to live on and reshape how we think about patient care.
About 18 months ago, he succumbed to his alpha one condition when his liver failed. But every day that I walk into my office, I can hear that gratitude in his voice.
I’m Donovan Quill, co-founder of Optime Care, a pioneering national specialty pharmacy. We focus on creating a trusted path to a fulfilled life for patients with rare and orphan disorders.
My partners and I decided to start this podcast, Rare Voices, because we want to bring you something that is unlike anything else that you have heard in the healthcare industry. We want the voices of people like my father to live on and reshape how we think about patient care.
On our show, you will hear from patient advocates, pharmaceutical innovators, leaders in insurance, physicians, and caregivers. With each episode we will reveal insights that provoke your mind and fuel your drive to serve rare patient populations.
These are the unique experiences of exceptional people who are reshaping our industry. These are rare voices. You’ll want to listen in.