Kamel Ghammachi and Karim Smaira are the co-founders of Genpharm, an entrepreneurial success story that now provides market access and marketing solutions for rare disease products across the MENA region. They discuss the impact of COVID-19 on their business; the evolving dynamics of the Saudi pharma market; and the crucial importance of building rare disease testing, infrastructure, and collaborations in MENA to raise awareness and create more timely treatment.   How would you characterise the impact of COVID on your business, especially given its entrepreneurial nature and niche focus on rare diseases? Kamel Ghammachi (KG): For us as entrepreneurs, the pandemic was definitely a setback and a change from business as usual. However, we also saw it as an opportunity to do things differently. The technology available today was not around ten years ago when we started the business and we were able to utilise new platforms to better engage with our community of healthcare professionals (HCPs) and key opinion leaders (KOLs) and disseminate information around rare diseases and their diagnosis. The pandemic actually led to more opportunities to make contact with them. As an example, pre-pandemic most physical congresses tended to have around 300-400 specialist attendees from a particular area. However, virtual congresses can have thousands of attendees, creating more frequent touchpoints. We have even managed to hold our advisory boards digitally. Because of the smaller financial impact, we were able to hold these meetings three times a year instead of once. In 2020/21 there were no setbacks on a business level in terms of turnover or hiring. We even hired more staff and although they do not come into the office every day, they work as hard – if not harder – than before. Karim Smaira (KS): It took us a couple of months to adjust as an organisation, but after that we never looked back. In fact, we engaged in more activities than we would physically because the costs were less. Recently, we sponsored a disease awareness event with the Saudi Paediatric Neurology Society with over 3000 participants – the maximum allowed – meaning that many doctors were not able to join. At a traditional congress with a booth it is impossible to reach 3000 people. These are CME credit-associated, meaning that doctors can listen, learn, and participate from the comfort of their own homes. The hassle of travel, airports and hotels check-ins are no more, although we do miss it from time to time.   Rare disease stakeholders in the US and Europe worried that the rare community was deeply impacted by the pandemic, with fewer diagnoses and restrictions on access to doctors and hospitals. Has this not been the case in the Middle East? KG: It is important to note that patient groups in our region are not as well developed as their counterparts in Europe and North America and in many geographies do not even have a legal framework for their existence. It is unclear whether there has been a significant impact on diagnosis, but patients living in remote areas with limited transport infrastructure have found it more difficult to travel and access care. We have not seen a big impact for patients living in major cities. Karim Smaira (KS): There has been a bigger impact on patient-physician interactions than on us as a business because many hospitals no longer allowed visits and switched to virtual consultations. For rare disease patients, psychological support is especially important; they often have more than one caregiver and many of their treatments are multidisciplinary with the need to visit several doctors. Therefore, the switch to virtual was a significant challenge for patients. At certain instances this impacted some prescriptions that we expected to be renewed being delayed due to patient meetings being delayed or postponed.   Genpharm has now been operating for ten years; what have been the defining principles that has got the company to where it is today? KS: The ten-year anniversary of the company comes with a sense of vindication for me. When we started, many people thought that our business model was not sustainable and that we were crazy to invest our own money. There are always more naysayers than supporters but, like any new business, it took a few years to get established and become profitable. As entrepreneurs the priority was to create value for the company, so we worked for the first three and a half years without salaries. Over the past few years, we have seen several people trying to emulate Genpharm, from the way we built our website to how we communicate. Some have even tried to enter the niche and underserved rare disease space we initially targeted. With what we have learned over the past ten years, we believe we have gained valuable expertise and an edge that differentiates us; Despite our growth we remain very agile and flexible which helps when competing with large companies or multinationals attempting to enter the region. KG: Our success can be attributed to one word: focus. As Karim noted, the first two or three years were tough, but from year four onwards we had a lot of business requests. As a small organisation, it took courage and wisdom to be able to turn down opportunities and maintain our focus on orphan drugs and rare diseases, but it was something we had to do.

Our success can be attributed to one word: focus