Meet the CEO shining a light on rare disease in the Middle East. Karim Smaira is the co-founder of pharmaceutical and market access consultancy Genpharm. He talks to RARE Revolution about the importance of putting the patient first and his aspirations for MENA (Middle East and North Africa) patients in the future
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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 in the founding of Genpharm and what did that journey look like?

We live in a region where a strong sense of tradition and cultural heritage co-exist with modernity. As a result, despite the increase in general awareness, Middle Eastern societies still witness high rates of consanguineous marriages, leading to a higher prevalence of inherited and genetic diseases, compared to other parts of the world. While we were exploring the pharmaceutical landscape, it quickly became clear that the level of research and development investments and the number of clinical programs in rare diseases, were going to produce a significant amount of innovations and breakthrough therapies. Moreover, this segment was underserved in the area. The combination of these factors led to establishing Genpharm with a focus on Rare Diseases. 

2.

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

​The markets we cover are very dynamic and are maturing extremely fast. We have to remain agile and up to date to be able to anticipate or adapt to the current trends both globally and locally. There are significant changes in the landscape particularly in regulatory, market access, pricing and reimbursement. The biggest challenges are certainly in funding, as more orphan drugs come to the market. The Ministry of Health are adopting models based on clinical outcomes and cost-effectiveness resembling the existing models in Europe.
The biggest opportunity today is in the gene therapy area. Many diseases that have significant societal and economic burden today will soon be treated effectively. We strongly believe that healthcare providers will accommodate for such innovative and curative therapies in collaboration with the industry which is considering creative pricing and payment models.

3.

What is your proudest moment in your career thus far?

I see my career as a journey with milestones on the way which makes it difficult to point a single moment out. Nevertheless, looking back I would say there are two events that I am particularly proud of namely, the day the first child was infused with Spinal muscular atrophy (SMA) gene therapy in the Middle East with the excitement and emotions of the family and the physicians and how much they valued the work done by Genpharm; and the cultural transformation I led at Merckserono making it at the time one of fastest growing companies in the region and recognised amongst the best work environments in the industry.

4.

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

I am truly inspired by the work we are doing at Genpharm. Shedding light on the Middle East and the rare disease segment in the region has helped awareness and accelerated the access to the new class of therapies. While we were trying at first to convince multinational companies to consider the region, we have managed to partially reverse the situation with companies now initiating the contact to explore the Middle East opportunity.
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Furthermore, I have met many parents and families of children with rare disease. The dedication, commitment and the length at which these parents are willing to go to help their children is indescribable and extremely inspiring. It serves as motivation, but it also helps put life in perspective and make us realise how fortunate we are.

5.

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

Anyone interested in working in this space should always think Patient First. It might sound like a cliche but it’s true. This goes from the people in the lab to the field staff. One thing I learnt is that patience and perseverance are key ingredients to success. Things never happen as fast as we would like them to, particularly in the rare disease space. However, when working in the interest of the patient results tend to follow.

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?

Despite a lot of efforts, in particular in awareness, there are several areas that require additional investments and can be done through public private partnership (PPP) collaborations. For instance, several diseases that have effective treatments could be added to the newborn screening panels which remain mostly limited to a few haematological and metabolic disorders.

There is also a lack of national patient registries. Most are still hospital based with little exchange of information between hospitals. Registries are a very valuable resource to support clinical trials and/or publications on prevalence and incidence of disease which is challenging to obtain.

7.

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

8.

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

​Being a CEO in a company the size of Genpharm is both challenging and rewarding for the same reasons. You need to be involved deeply in both setting the strategic direction and in the daily operations. Having said this, being so close to the business allows you to have a direct impact on the development of the organisation. As the company grows, it is important to promote growth of staff and to have competent and trustworthy personnel to delegate to. We are fortunate to be in this situation today as we are developing a few employees to take on additional operational and management tasks.

9.

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

​This year is turning out to be one of the most challenging in recent memory. With the current geopolitical situation in the region, the dramatic drop in oil prices, on which government budgets are built in the Gulf and the on-going global Coronavirus outbreak, we are indeed in crisis management mode. Nevertheless, we are still optimistic, and my wish would be to celebrate meeting our ambitious target by year end.

10.

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

Since joining the industry, I always wanted to do something entrepreneurial. My education and the corporate world prepared me well for this endeavour by training me and helping me acquire management experience and expertise.
What is surprising is that growing up, I never thought of working in the healthcare or pharmaceutical sectors. Thinking of it now and how passionate I am about what we do, I couldn’t picture myself in any other industry. We are so fortunate to be able to reach and impact so many people lives in such a positive way.
To quote Confucius: Choose a job you love, and you will never have to work a day in your life.