Gianfranco Biliotti, recently appointed General Manager for Alexion Colombia, shares his insights on the particularities of operating in the ultra-rare disease segment, while highlighting the importance of managerial flexibility, the company’s unmatched patient-centricity and close ties with doctors, the role of education in improving patients’ lives and his strategic priorities for Alexion in Colombia.

Could you introduce our readers to your career path?

My career started in a pharmaceutical market research start-up in Mexico. After completing my MBA in France, I worked for Janssen for different strategic roles in Russia, Italy and Latin America. I left the immunology market to lead the Colombian operations of Alexion in March 2017. From my extensive professional travels, I came to understand that bringing out the best of a team requires flexibility. Leadership is not a one-size-fits all model. It is vital to be open to the methods of your new co-workers and adjust to their professional culture.

Could you tell us about Alexion’s operations and strategic direction in Colombia? How do your innovations contribute to the Colombian healthcare ecosystem?

Alexion is a leading company in rare disease treatments. Its Colombian affiliate opened in 2009, we employ 40 individuals involved in patient support programs, scientific information, operations, and commercial activities. Our employees are highly committed to help the patients adhere to their treatment and benefit from optimal results. So far only one product, Soliris, has been approved by INVIMA. We are in the process of registering two more drugs, Kanuma and Strensiq, which will be indicated for two low prevalence metabolic disorders. The company is doing well and has recorded substantial double-digit growth in 2017. To continue growing, I plan on extending the indication of our products and registering additional ones in the market. With regards to the innovative ecosystem I believe that breakthrough innovations cannot happen every day. The most important is to have the willingness to achieve and make things happens on a daily basis. Our teams have this solution-oriented mind-set and constantly build bridges to overcome any barriers we encounter.

What is special about working in the ultra-rare disease segment?

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Very few companies are willing to invest there; part of the reward is improving the lives of patients and their families that otherwise would be neglected by everybody else. Alexion’s DNA and basis of success revolves around an unmatched relationship to doctors and patient centricity in industry. Indeed, the diseases we focus on affect 2 to 15 people per million inhabitants, therefore our operation are comparable to finding a needle in a haystack.

We face two main challenges in Colombia. Few doctors know about the clinical signs of rare diseases and access to specialist is scarce: for example, there are only about 250 haematologists for 50 million Colombians. The former means the patient is likely to ‘get lost’ in the system before finding nappropriate treatment. The latter implies that even the people who know they need to see specialists are unlikely to get access to one or do so after waiting a very long time. For instance, the number of patient per inhabitant is similar to Mexico and Brazil but far inferior to the ratio per inhabitant we have in France, Germany or Netherlands. Either the disease prevalence is genetically related or the system in developing countries is less efficient in diagnosing patients.

How do you reach patients then?

The first step is to build a clear understanding of the patient’s pathway in the health system. This way we can identify the main blockages and address the issues to improve patient support. Having done so, we engage in education programs with the people our patients are likely to encounter. It is of paramount importance that we educate the medical community to recognize the signs of the ultra-rare diseases and let them know what procedure to follow when they encounter one. In turn, we expect to increase diagnose rates and decrease mortality of patients. Eventually, we hope to broaden the scope of medical practitioners sensitized to ultra-rare disease diagnostic in Colombia and accelerate the funnel to treatment for the patients.

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How is Alexion partnering with the government?

Colombia should be very proud of its healthcare system, one of the best in the region and even worldwide. The statutory law has granted patients affected by ultra-rare diseases with assistance to fund their treatment. And the ‘vital no disponible’ framework allows doctors to import unregistered medication in cases where no other therapeutic is available. Unfortunately, financial strains exist and care is not always available. More specifically, the pathway to access is costly, and high value drugs are still difficult to access to; many blockages can cause delay before patients access the treatment. Negotiations based on the cost effectiveness of our drugs do not work. Instead, we are permanently engaging with EPSs, HMOs and the government to convince them of the social importance and lifesaving effects the access to ultra-rare disease treatments has. Additionally, we are committed to addressing the system’s inefficiencies. From this, we hope to increase the fund allocation to treatments such as ours.

What are the priorities to further grow Alexion’s operations Colombia?

We want to build a strong metabolic franchise. The first step to this is getting Karuma and Strensiq registered by INVIMA. Second, we want to broaden the scope of indications our molecules are being used for. Third, we’ll be looking at business development opportunities with companies that are eager to enter the Colombian market to complement our rare disease portfolio.