Eric Dube Ph.D. of Retrophin

Eric Dube Ph.D., understands the fear and uncertainty that can come with a rare disease diagnosis, and it is this personal insight and understanding that he brings to the role of CEO of Retrophin. He talks to RARE Revolution about the unique contribution the rare disease patient makes, and about his company's mission to support diversity and ensure all patients have the same access to information, clinical trials and treatments

​CEO Series: meeting the beating hearts behind the RARE brands

1.

What made you want to move into the wide world of rare disease, and then specifically Retrophin and what did that journey look like?

I’ve had the opportunity to work in a number of therapeutic areas including oncology and respiratory with some exposure to rare disease in both, and I have found my mission in rare disease.
 
Earlier in my life, I was diagnosed with two rare cancers that had no approved therapies. Fortunately, the cancers were caught early, but I felt the fear of not having a treatment. This gave me an understanding of this industry’s purpose.
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It also took me a long time to feel comfortable being my authentic self, so I show up to work as real as possible and encourage others to do the same. Part of my authentic self is a driving desire to help patients and their families—this is one of the many reasons why Retrophin is such a good fit. 

Our culture is founded on Our Why which strives to connect each person’s purpose for being in this industry, with our company mission of delivering treatments to people living with rare disease. Importantly, it enables me to discuss at every level of our organisation the impact our decisions and actions have on patients.

2.

What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?

I believe that one of our biggest challenges is also one of our greatest opportunities. At Retrophin, many of our employees, including myself, come to work each day because we are rare disease patients, survivors, caregivers or have in some way been touched by rare disease. This gives us a unique insight into the needs of patients within our communities. One of the challenges that we have identified is the lack of equitable access to information, clinical trials, diagnosis and treatments for diverse patients in the rare community.
 
This is also where our opportunity lies. We are advancing Phase 3 clinical programs for rare kidney diseases that affect a high proportion of Black, Latinx and Asian patients. As we continue our efforts to understand every patient’s journey and build upon our efforts to have our organisation reflect our patients, we have an exciting opportunity to not only raise awareness of these inequities, but also provide improved access to information and medications, if successful.
 
We will also take the opportunity to build momentum behind collaborations that champion diversity and inclusion in our broader industry, so that all patient voices can be heard.

3.

What is your proudest moment in your career thus far?

​Earlier in my career, I moved from the US to my first international assignment in Japan. I had to quickly learn the language, culture, marketplace and diagnose the reasons for performance gaps for a declining business. After facing early failures, I had to reset my expectations and what I thought it took for business success and learn from the ground up. After suspending my judgement about work culture and customer insights from the US, and spending countless hours learning Japanese, I helped lead the organisation to one of the most successful launches in the company.
 
However, my proudest career moment to-date has been taking the opportunity to lead Retrophin into its next phase of growth. We have an incredibly strong organisation with a deep, purpose-driven culture. We are set apart by our unique understanding of the patients we strive to help each day, and by the way we collaborate with the rare disease community to make decisions. 

Joining advocacy leaders from IgA Nephropathy Foundation of America, International Cystinuria Foundation, and NephCure Kidney International in Washington, D.C., for Rare Disease Week on Capitol Hil

4.

What and who are your personal and professional inspirations and why?

​I continue to be inspired by my grandparents. They taught me so much about the importance of education, giving back to your community, and embracing the differences of others. Much of who I am as a person and as a leader is a reflection of how they helped to raise me. My grandmother is also one of the funniest people I know, so I am always reminded to laugh.

5.

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

My advice is, actively seek out and listen to patients, and make sure you have a strong sense of resilience. Often, there is no clear path laid for drug development, clinical trial design, or reaching the patients who might be affected. Working in rare disease very much echoes the uncertain path that many rare disease families are on. There are few answers and many uncharted paths. It requires persistence, patience, and a tremendous amount of hope. 

6.

Do you think the government does enough for the rare disease community at a local and central level, and what gaps do you see currently or emerging?

​There has been progress at the federal level that will make a difference for rare patients. The 21st Century Cures Act, Advancing American Kidney Health Executive Order, the CARES Act, public-private research collaborations, proposals to provide a caregiver tax credit, and expansion and standardisation of newborn screening are steps in the right direction. We must continue to work with policymakers to improve access to care for all people facing rare disease, and to dissolve the systemic health disparities faced by diverse populations in the US. The COVID-19 pandemic has made it even harder for rare patients and caregivers. While we can be cautiously optimistic about some legislative changes, we will not pause in advocating for our patients and their caregivers. There is so much work to be done on a policy level to ease the diagnostic journey for rare patients, to advance treatments for rare diseases and to improve access to care.

7.

What would you say are some of the biggest motivators for your employees?

Retrophin team members get excited and find great purpose when people living with rare disease come to our office and talk to us about their experience and share their incomparable insight and expertise.

Rare disease advocates from NGLY1.org, National Center for Advancing Translational Sciences, and R&D team members from Retrophin

Grace Whiting of National Alliance for Caregiving with Lillie and Carrie Enicke, rare kidney disease advocates, showing their stripes on Rare Disease Day 2019 at Retrophin

8.

What are the toughest parts of being a CEO, and conversely what are the most rewarding?

​One of the toughest parts of being a CEO is dealing with a setback when it means that a treatment may not get to a patient community with significant unmet needs. Last year, our lead development candidate for a severe rare disease with no approved treatment unfortunately did not meet its expectations in a clinical trial. Making the exceptionally difficult decision to discontinue further development was one of the toughest things we have had to do as an organisation, as it meant we could no longer offer hope of a treatment for this community.
 
I believe great cultures are best understood in the face of failure or setback. I believe our organisation went above and beyond to further support these families and contribute to the understanding of this disease. This included setting a plan to donate the full Phase 3 dataset to academic experts in the hopes of improving the probability of success for other medicines in development for this condition.

9.

What would be your one wish for Retrophin for the year ahead?

My hope is that we can work swiftly to advance treatments for patients living with rare kidney and liver diseases. And that we can help bridge the gap for those who need support and treatment but may not have the access they deserve.

Marc Coronel at Retrophin sharing his experience living with rare kidney disease

Dana Perella, founder of Cookies4Cures, visits Retrophin at Thanksgiving 2019

10.

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

​One of my passions is learning and personal growth. Years ago, I wanted to be a professor with a focus on developmental psychology, and the resilience of marginalised communities. My upbringing instilled in me the value of making a difference in society.

To find out more about the work of Retrophin, visit;
www.retrophin.com