The patient advocacy role at Saniona was created just over a year ago when Paul Pereira, the vice president of patient advocacy, joined the company. Paul talks to RARE Revolution about how he sees himself as the bridge between the patient community and the science and research, and about what he has achieved in a relatively short space of time at Saniona, to ensure the patient remains at the heart of everything they do

PEO series: meeting the beating hearts behind the rare brands

1.

How new is the patient engagement role in your organisation, how has it evolved and what are your hopes for the role in the future? 

The patient engagement role at Saniona was created when I joined in November 2020. One of the things that attracted me to this opportunity was the prospect of building the patient engagement function for a new company that focuses on rare diseases. During my interview, our CEO Rami Levin shared with me that it was important for him to create the function early in our company’s growth to not only inform our development efforts but also to shape who we are as a company. So as employee number nine in the US, I had a blank canvas to create a function that would be meaningful to the rare disease community.

Today, we have connected with over 100 advocates from the Prader-Willi Syndrome (PWS) and hypothalamic obesity (HO) communities worldwide, and their insights have been critical to informing our drug development efforts. We have also incorporated the voices of people living with rare diseases in our culture, featuring their art on our walls, their images on our website and their voices in our townhalls. But there is so much more we can accomplish. As our development programme progresses and as our company grows, I hope that the rare disease communities that we serve will look to Saniona as a best practice on how a small company can be a thoughtful and meaningful partner.

2.

What does a typical week entail for you, and are there any specific projects you can tell us about?

My days are spent speaking with advocates, caregivers, and families from PWS and HO communities from all over the world while serving as a strategic advisor to our discovery and development teams. Since I am still not traveling and am operating remotely, due to Covid, my meetings are mostly on Microsoft Teams, which has been a helpful alternative to live meetings. It also means I can quickly and efficiently meet with advocates from all over the world.

3.

What were your personal motivations to taking up a role in patient engagement?

I am a proud dad of three healthy teenage boys. Every day, I appreciate how lucky we are because we had a scare when our middle son was a baby. When he was around six months old, he developed a mysterious cluster of symptoms. Extreme abdominal pain, gastrointestinal distress coupled with respiratory issues. He stopped eating and was rapidly losing weight. Initially, our doctor thought he might have cystic fibrosis but that was ruled out. Over the course of the next two years, we visited dozens of doctors, and his condition remained undiagnosed. As parents, my wife and I felt helpless. We did not understand what was wrong and could not help him feel better. Fortunately, the symptoms slowly went away as mysteriously as they arrived. Today he is a healthy, happy, and gregarious teenager. But it’s not lost on me that many families are not that lucky. I feel that by dedicating my work to patient advocacy, I have a chance to make a difference in the lives of families living with rare diseases. I empathise with their struggles and am passionate to help them find solutions or hope.

4.

What makes the role of patient engagement officer important to your organisation?

I like to think my role is the glue that holds us all together. I consider myself the voice and conscience of patients, so my role touches every function within the company. One of the most rewarding aspects of my job is helping everyone, especially those in the lab and far removed from patients, better understand, and connect with that deep, patient-driven motivation. The patients are why we all come to work, and being their advocate is a huge responsibility. I hope I’m serving as a reminder each day that patients are counting on us.

5.

In your role, how do you ensure the patient voice remains central?

In my role, I work closely with our teams that discover and develop our medicines to ensure that patient perspectives are considered every day. For example, I have helped educate our Discovery Team to understand how a patient community may be dedicating their efforts to science like creating patient registries, collecting tissue samples or maintaining animal models. It is so rewarding to help my scientific colleagues better appreciate the patient experience but also how they can be scientific partners. I also serve on our company’s Culture Committee and Equity, Diversity, and Inclusion Committee. In those roles, I bring my personal insights but also try to incorporate perspectives from patients in those forums as well. Just this week, I was part of a team planning Saniona’s 10^th anniversary celebration activities. I had shared with the team that the PWS and HO communities struggle with how societies place an unhealthy emphasis on food during holidays and special events, which often leaves people who suffer from hyperphagia left out of joyful occasions. They would love to see society change and de-emphasise food’s role in how we celebrate. So, we have decided to respect our patients’ perspectives and not make our events centred around food.  

6.

How do you reconcile operational business needs with elevating the patient voice?

I don’t see these as being in conflict. I feel that if patients remain your north star, then doing what’s right for patients in an ethical and compliant way will result in business success.

7.

What are the most rewarding aspects of your role?

I love meeting with families and learning about their challenges, hopes and dreams. Most rewarding is seeing how a therapy can be transformative for these families. I hope to experience that again.

8.

What is your proudest moment in your career thus far?

One of my first priorities when joining Saniona was to create the principles on how we would work with patient communities. After collaborating with PWS and HO advocates, we developed these principles which guide our patient engagements every day. I’m very proud of these principles but more importantly, how these helped create a path for us to move forward to make a meaningful difference in the lives of patients.

9.

What advice would you give someone considering working in the rare disease space?

In rare disease, you are much closer to the patients, caregivers and their families than working with chronic diseases. Be prepared to listen and learn, but also know that it can sometimes be emotionally challenging. Especially if no current treatments exist. So, while you are trying to give of yourself to the community, don’t forget about your own emotional wellbeing.

10.

If you weren’t Patient Engagement Officer of Saniona, what was Plan B?  What did your 10-year-old self want to do as a job?

When I graduated from law school, I wanted to run for public office, but my path led me to Government Affairs. I think holding a position in public office would allow me to make a difference in my own community and set a good example for my children about the value of public service.