Rho CEO, Laura Helms Reece, gained extensive experience in the world of business and pharmaceuticals, before returning home to join the family business. Laura talks to RARE Revolution about how the biggest motivator for her, and her team, is making a difference to people lives, and about the challenges and opportunities that lay ahead for clinical trials
CEO Series: meeting the beating hearts behind the RARE brands
What made you want to move into the wide world of rare disease, and then specifically Rho and what did that journey look like?
My parents founded Rho in our basement in 1984. My father was a professor of biostatistics and my mother ran a data management group at UNC-Chapel Hill. They started Rho because, as state employees, they were looking to earn extra money to send their kids to college. When they started, they hired graduate students and moonlighted faculty and staff from UNC to help run projects in our basement. I checked data for allowance money as did my brother.
I did not actually intend to stay in the family business. When I went to UNC as an undergraduate, I was a business major. I graduated with my master’s degree and had to decide which direction I wanted to take—stay on the path to become a finance professor or become a biostatistician. On a good day in finance, you make someone rich. On a good day in biostatistics, you make someone healthy. I decided I felt better about making someone healthy.
I still did not want to work in the family business, so in time between earning my master’s degree and getting my doctorate I worked for Glaxo. After my doctorate, I worked for Astra Zeneca in Wilmington, Delaware, and learned a lot about how to develop a drug. Despite having a wonderful experience, I wanted to come home to North Carolina. That is when I talked to my parents about working for the business.
What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?
Certainly, over the next several months, and possibly through much of next year, the novel coronavirus (COVID-19) will continue to have a major impact on how clinical trials are run. Patient safety is always a top priority, so it is important we make sure we have the right protocols in place to ensure patients feel safe about participating in clinical trials, especially during this time.
Our teams have helped many sponsors navigate and implement decentralised solutions for their clinical trials and programs. This includes providing recommendations for the level of decentralisation required (e.g. a fully virtual trial or a hybrid approach), as well as the development of strategic plans for remote and central monitoring, technology integration, IP management and site and patient engagement.
Based on our experience, we believe that the best decentralised solutions are patient-centric, customized and rooted in a robust Risk-Based Quality Management (RBQM) framework, as specified by the E6R2 guidance. Additionally, Rho is coordinating a new study called Human Epidemiology and Response to SARS-CoV-2 (HEROS) to help determine the rate of COVID-19 in children and their family members in the U.S. The study also aims to determine what percentage of children infected with SARS-CoV-2, the virus that causes COVID-19, develop symptoms of the disease, as well as whether rates of SARS-CoV-2 infection differ between children who have asthma or other allergic conditions and children who do not. HEROS is sponsored and funded by the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health (NIH).
What is your proudest moment in your career thus far?
I am proud of the work we do at Rho every single day. It is one of the blessings of working in our industry. Certainly there are huge highlights like the days that a therapy we’ve supported comes to market or a major publication we’ve supported comes out that will change lives for people. The days when we discover a treatment doesn’t work are heart-breaking. And yet, I take pride in our work to test failed therapies vigorously. When we find a therapy doesn’t work we can help clients and patients move on to more hopeful options. I am also proud of the work we do at Rho to build a business that treats employees and clients honourably.
What and who are your personal and professional inspirations and why?
Personally, I am inspired by my grandmother. She was widowed at the age of 38, with a high school education and three small children, during the height of the polio epidemic. She eventually became a very successful businesswoman but had some hard years. My parents, who both came out of childhood poverty and built a successful business, are also an inspiration to me. My professional inspirations are many and varied. Dean Barbara Rimer has inspired me as she has overseen the Gillings Global School of Public Health at UNC. She has dealt with years of decreasing state funding while increasing the value that the Gillings School brings to public health. In contrast with Dean Rimer, whom I get to talk with regularly, I am also truly inspired by Dolly Parton, whom I’ve never met. She has built an impressive business empire, brought jobs to the depressed area where she grew up, and funded a number of valuable social support charities. And she did that with big blonde hair and a country twang.
What advice would you give someone considering working in the rare disease space?
This is a space that requires innovation and often presents unique challenges. The rare disease community is one that faces a number of hurdles—if given the opportunity, interact with the patients and caregivers and listen to their voices. Patient and caregiver input in the rare disease space is valuable to researchers throughout the product development process. It is also critical to work closely with regulatory agencies, as the challenges of product development in the rare disease space may require creative study designs and agency feedback and support in uncharted territory.
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?
The rare disease community is a strong and resilient one, and they have worked hard to give themselves a stronger voice in the local government and afford themselves the opportunity to provide feedback. A state’s government has a critical role to play as to how a given state’s programs and policies can benefit the rare disease community. On a more central level, the Orphan Drug Act provides for status of designations such as orphan drug designation and regenerative medicine advanced therapy designation in order to incentivise companies to develop products for rare disease. The biggest gaps I see are accessibility and affordability. Rare disease therapeutics are extremely expensive to develop and in particular we have seen recent gene therapy products approved for rare diseases that have a high price tag. Congress will need to work with pharmaceutical companies and insurers to develop a strategy for financing these treatments. There are innovative, life-changing therapies being developed (and approved!) and the government must now give thought on how to determine the price of these treatments and how to finance them--the benefits of an innovative treatment should not be denied due to affordability.
What would you say are some of the biggest motivators for your employees?
First and foremost, I would say the nature of our work is the biggest motivator for our employees. As I previously mentioned, on a good day in biostatistics, you make someone healthy. The fact that we get to work with sponsors to bring lifesaving or life-altering therapies to market to help improve health, extend life and enhance quality of life.
I think the culture Rho provides is also a key motivator. We are fortunate to have a collaborative work environment where we value a strong team spirit and are loyal to each other and to our clients—and there is a mutual trust and respect across the entire organisation. Rho also encourages a work-life balance that allows employees to bring their best selves to work while also being passionate about their lives outside of work.
Rho's new headquarters
What are the toughest parts of being a CEO, and conversely what are the most rewarding?
The toughest part is that the buck stops here. I am responsible for the decisions that are made at Rho and I take that very seriously. For my first eight years as CEO, I had a co-CEO who was also my brother. Sharing that burden with someone you trust completely makes the burden much easier to carry. I’m glad I had those years. I still have his support, as well as the support of my parents, who founded Rho. But I’m the one who has final responsibility. The most rewarding part of being the CEO of Rho is getting to work with truly wonderful people. Because almost all of Rho works out of our Durham office (when we aren’t in a pandemic), I get to talk to people throughout the organisation regularly. I love working with the executives and project teams that I interact with frequently. And I also love the conversations I have over lunch in our hub and in the hallways. Rho is full of talented, dedicated, and delightful people.
What would be your one wish for Rho for the year ahead?
I would love for us to increase the number of lives we improve by extending life, enhancing health, and improving the quality of life for the patients. We do that by expanding the number of clients and projects we serve. Our talented teams of experts make a difference in the projects they support. I’d love to help more projects to successfully execute their trials and submit to regulatory authorities world-wide.
If you weren’t CEO of Rho, what was Plan B? What did your 10-year-old self want to do as a job?
My 10-year-old self wanted to be a Broadway star. Sadly, as my 9-year-old recently put it, “Mama just can’t catch a tune.” So that isn’t really a plan B for me! The truth is, I love business. If I weren’t the CEO of Rho, I’d start another business with a worthy mission. I’m just a business geek.