RARE Revolution Magazine were honoured to catch up with Sika Dunyoh following her recent promotion to director of patient advocacy at Travere Therapeutics. Sika, who describes rare disease advocacy as heart work, shares her motivations behind leaving an established career in publishing to enter the world of rare disease. Sika is now an integral part of the Travere patient advocacy team, headed by their vice president of patient advocacy, Eve Dryer, and together they are putting patients front and centre in all they do while addressing important issues of diversity and equity in rare disease

PEO series: meeting the beating hearts behind the RARE brands

1.

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

At Travere Therapeutics, a biopharmaceutical company focused on rare kidney disease and rare metabolic and liver disorders, we’ve had a vital patient advocacy function from the earliest days of the company’s founding. Ensuring that the patient perspective is integrated into everything we do is an essential part of who we are and how we operate. Today, our patient advocacy team, which is led by Eve Dryer, is five people strong and interwoven into nearly all aspects of the company’s work.

2.

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

I help bring the experiences of people living with rare disease into my company so that we can stay focused on the urgent unmet needs they face. I specifically work with organisations serving those with rare liver and metabolic disorders, while other teammates are focused on rare kidney disease, specifically IgA nephropathy (IgAN) and focal segmental glomerulosclerosis (FSGS). My work involves working with patient advocacy organisations to help empower and inform people living with rare disease about resources available to them, to gain understanding of the patient experience, and to help eliminate obstacles and improve access to diagnosis and care. That means in a typical week I spend a lot of time in meetings with patients, caregivers and advocacy leaders.

In addition to my advocacy work, I am also one of the co-chairs of Travere’s internal Diversity Council, so I meet with the council’s committee and subcommittees to ensure that projects and initiatives are moving forward. 

I am also proud of the work we are doing with the Black Women’s Health Imperative (BWHI) to spearhead the Rare Disease Diversity Coalition (RDDC). Led by BWHI, the coalition seeks to address challenges faced by marginalised populations and identify potential solutions. The coalition comprises a diverse group of healthcare organisations, patient advocacy groups, and industry experts who share a passion and a commitment to addressing the racial and socioeconomic disparities among people living with rare disease. Some of the areas the coalition is addressing are clinical trial diversity, cultural competency among healthcare professionals, and health equity and literacy.

3.

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

Back in 2015, I launched a fundraising campaign in memory of my sister, Carolyn, who passed away due to complications from a rare autoimmune disease called relapsing polychondritis. At that time, I was working as a marketer in the publishing industry. The people I met and the stories I heard during that time lit a spark in me. I realised that I wanted to work in a space that allowed me to shine light on the experiences of people living with rare diseases. That led me to leave my career in marketing and take a job at NORD in 2017. There, I developed and managed NORD’s educational programming. After two and a half years there, I joined the team at Travere in 2020. As a director of patient advocacy, I have been enjoying working directly with the rare disease patient community.

4.

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

The organisation recognises the need to understand the diverse experiences of people living with rare disease. These perspectives help inform how we operate, and the decisions we make as we work to identify, develop and deliver life-changing therapies.

5.

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

There are a number of efforts we undertake to ensure that the patient voice is constantly top-of-mind for colleagues at Travere. We regularly bring the stories of patients and caregivers into the organisation so that our colleagues understand patient experiences and continue to be inspired. We also launched a patient and caregiver advisory council from whom we are committed to seeking input on everything from clinical trial protocols to patient and healthcare professional (HCP) educational programmes and materials. The council, along with our patient advocacy leaders, was launched to help ensure that we are responding to the needs of our patient communities.  

6.

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

At Travere, we believe that our mission and vision can’t be met if the patient experience is not prioritised. As a person whose sister had a rare disease and who came into the role from a patient advocacy organisation, I truly believe our company gets “patient-inspired” right.

7.

What are the most rewarding aspects of your role?

Everything I do on behalf of rare disease patients is rewarding!

8.

What is your proudest moment in your career thus far?

This is a tough question. There are several moments of which I am most proud. I am proud of how brave I was to leave my long career in publishing to work in rare diseases despite my fear. I am proud of the work that both I and my colleagues have done to address diversity and health equity within the rare disease community. I am proud of the work I have done to educate and empower rare disease patients and their families.  

9.

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

I call rare disease advocacy “heart work”. I would tell anyone thinking about working in the rare disease space to be prepared to hear some of the most moving and most heart-wrenching stories and not to shy away from them. They may sometimes be difficult to hear, but they are the stories that make you a better, more compassionate leader.  

10.

If you weren’t a patient advocacy director of Travere Therapeutics, what was Plan B?  What did your 10-year-old self want to do as a job?

If I didn’t work in rare diseases, I would still be working in marketing. I really enjoyed it! When I was a 10-year-old, I certainly wouldn’t have guessed I’d work at a biopharmaceutical company. I think at that age, I wanted to be an R&B singer, which is what I really want to do, but alas, I can’t sing! Maybe in my next life.