As a TV Producer for Lifetime’s Behind the Mystery: Rare and Genetic, I have the opportunity to speak with some of the leading forces orchestrating change for rare patients across the globe. This month I sat down with Genzyme’s Simone Azevedo. Azvedo works as the Vice President, Head of Hematological Diseases.
Carri Levy: What got you interested in the Rare Disease world?
Simone Azevedo: I worked with Genzyme before I officially joined the company in Brazil in 2001 (I worked for another pharmaceutical company and distributed one of the Genzyme products) and understanding the work they were doing and helping patients, who had no other chances before, was absolutely amazing. I’m a biologist and had thought about becoming a doctor so this was probably the closest way to be able to help someone in need.
CL: What do you do in your day to day schedule?
SA: I spend a lot of time making sure we are on track to make medicines available to patients – either medicines we already have in the market or new products we are developing. Planning, anticipating needs, listening to our customers (amazing what you can learn from a doctor, a patient, a healthcare plan… they all contribute to the work we do here), keeping the team together around finding solutions to improve the lives of all patients.
CL: How has the rare disease community effected you on a personal level?
SA: When I met a patient with rare disease for the first time it completely changed my life – I couldn’t even think of a good reason to “complain” about my kids being too active (they were 3 and 5 years old when I started here – lots of energy)… You appreciate how the families come together, how “help” gets a different dimension… I fell in love with the cause of rare disease…
CL: Is there a specific patient story that impacted your career?
SA: There are many… but one in particularly gave me a very different perspective about how we can change lives – and sometimes we don’t necessarily need to provide treatment… a family from an African country was seeking treatment for their oldest son, unfortunately the boy passed away before we were able to provide treatment. The family then mentioned a second child who they didn’t know if had the same disease and we helped them getting the baby diagnosed. Luckily the baby is healthy and the father sent a note saying something like this: “Thank you for trying everything to save our first son… he will be missed but we are so thankful we have a healthy child to care for… if you (Genzyme) had not helped us, my wife would have left me as she couldn’t manage to know she was not able to give me a healthy son…so thank you for saving my marriage and my family…” This, for me, is priceless.
CL: What’s your favorite part of your job?
SA: Listening to a patient, sharing the stories we were part of, finding a way to provide access to those who need.
CL: If money wasn’t an issue and the restrictions from the FDA were not an issue, what would you do to help bring attention to the disease that you focus on?
SA: Talk, talk, talk… share what we know, spread the word about the diseases – the shortest way to diagnosis, treatment, cure is knowledge. If we don’t share the knowledge all we do have no value.
CL: Many of our readers spend a lot of time in bed and in the hospital and we wanted to know what are your favorite movies to recommend and your favorite television shows.
SA: Easy one: “Up” is by far my favorite movie – how they came up with such a great story… never thought I would watch a cartoon so many times in my life… TV shows? I love watching all kinds of things: Bones, NCIS, Big Bang Theory (this one cracks me up), Friends (yeah, I know… old stuff but awesome)… Music… sometimes more than what is on TV, is about music. Listen to Brazilian music (Pandora is a great source), Disco J, even the flooding of Xmas songs this time of the year…
Learn more about Simone and her work at Genzyme here.