With a background in nursing as well as in the pharmaceutical industry, Alex Evans brings a wealth of experience and expertise to her role as CEO of RAREiTi. She talks to RARE Revolution about the challenges the COVID-19 pandemic has brought to the healthcare industry, and how these challenges can also provide opportunities by learning from the way people have responded to and overcome such unexpected difficulties
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 RAREiTi and what did that journey look like?
I feel extremely privileged to work in the rare disease arena. I qualified as a nurse many years ago. Having that training has enabled me to have a clear view of the challenges that patients and their families overcome. My career also included a number of years in the pharmaceutical industry, working for AstraZeneca across multiple therapy areas and Biogen, specifically in multiple sclerosis. It was when I worked at Nutricia, and then Healthcare At Home, that I first experienced the impact a rare condition can have on a patient and their family. Joining RareiTi was an easy decision for me to make, because it allows me to be part of a transformation in how companies view managed access programs. There’s tremendous potential here to help rare disease drug developers increase their success rates locally and globally, and at the same time help doctors and patients gain access to new, and often life-changing, medicines.
What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?
I hate to say the C word, but I think that Covid-19 is going to be a challenge for the health economy globally for the next few years. Some payors are finding themselves with tricky decisions to make in managing healthcare budgets. They need to ensure that their patient populations all get access to the treatments they need, despite the risks that the pandemic poses for rare disease patients.
The opportunity for RareiTi is to assist healthcare decision-makers with this task by providing high-quality, in-home services and meaningful real-world data. RareiTi’s unique approach to managed access programmes, based on a foundation of real-world evidence and innovative patient-friendly technologies, delivers some big picture objectives for healthcare ecosystems. There is a great deal to be learned from how Covid has been managed. Due to the nature of the disease, regulators have had to look to innovative ways to bring treatment and diagnostic kits to market quickly. The same principles should be applied to access for therapies in rare diseases.
What is your proudest moment in your career thus far?
I am lucky. I have a really great career. I think getting my first CEO Job—this one at RareiTi, stands out as the proudest moment. RareiTi is a truly responsive and responsible Managed Access company that combines a breadth of global experience, cutting edge technologies and analytics that deliver better outcomes for everyone. Our founders, Natalie Douglas and Wendy White are industry veterans with a vision that will truly benefit rare communities. Our global reach and infrastructure mean that our clients can be confident that the services we provide are based on expertise and experience across the world, meeting safety and regulatory requirements in a large range of countries, and providing multi-lingual support.
What and who are your personal and professional inspirations and why?
I’m inspired by the example of Nobel Prize winning geneticist Barbara McClintock, who revolutionised the understanding of how genes work through her pioneering discovery that genes can change positions on chromosomes.
On a personal note, I am studying for a professional doctorate in nursing at the moment, and I have done a lot of research into the history of the profession. I believe that leadership is key to really good nursing care. The women who built the foundation for leadership in nursing—Florence Nightingale, Mary Seacole, Jean Watson and Barbara Carper, are all truly inspirational to me. However, I also want to mention the inspiration that patients and patient advocacy groups bring. The patient voice is so important in rare disease, RareiTi works in close partnership with key patient advocacy groups to support the important work that they do.
What advice would you give someone considering working in the rare disease space?
I would advise them to definitely go for it. The opportunity to work in such a varied arena with fabulous people is inspiring every day!
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?
One of the gaps that is currently impacting rare disease patients is the interruption in clinical research caused by Covid-19. Some research programs are finding their way through this crisis by switching to telemedicine and home care, which is one of RareiTi’s strengths. It is my hope that regulators will be more open to this model even after the crisis is resolved, because so many patients see it as safer and a better fit for their lives.
What would you say are some of the biggest motivators for your employees?
We have a fabulous team, whose ambition is to help patients and doctors get early access to life changing medication. RareiTi specialises in managed or early access programs, which means we work with the regulators to ensure the safe provision of medication under regulated conditions to patients before they have been granted a licence for use. Helping patients and their families get treatment early, can be life changing for some patients who have been waiting for a treatment to emerge or to be approved.
What are the toughest parts of being a CEO, and conversely what are the most rewarding?
The most rewarding part of this job is being able to help those hard-to-reach communities of patients and being able to improve their quality of life. Managed access programs are such an important part of the rare disease arena, ensuring that patients can access long awaited medicine, outside of the clinical trial (which also play an important role, but are not accessible to everyone) and can often be a lifeline to patients. These programs offer the clinicians more options when treating patients, and experience with a new medicine before it comes to market. The real world evidence generated by managed access programs also often enhance the data that is required to get approval of the medicine, so supports the approval process too.
Working in this space requires constant learning, innovation, and adaptation, because of rapid changes in both the science and the policy environment. That is one of the most challenging things about rare disease, but it’s also one of the most gratifying.
Because I began my career in nursing, I find it particularly rewarding to see how the work we do provides clinicians with more options when treating patients. It also enables them to gain experience with new medicines before they come to market. The real-world evidence we collect supports the approval process so drugs can get to market sooner.
What would be your one wish for RAREiTi for the year ahead?
To help as many patients as possible get early access to medication.
If you weren’t CEO of RAREiTi, what was Plan B? What did your 10-year-old self-want to do as a job?
There was no specific plan B. I have always been drawn to jobs that ultimately help patients. I think that the impact that drug developers have on patients’ lives is sometimes misrepresented, and not considered in its purist form. The people I know who work in rare diseases are dedicated to bringing new medications to patients and want as many people as possible to benefit. Being in a position to help companies connect patients and doctors to new life-changing medication is my dream job!