Our Mission: Better Care for People with Rare Diseases
Interview with Andrea Passalacqua, VP, General Manager of Alexion Pharma Germany GmbH
In a health system where common diseases such as diabetes or heart diseases are prioritized, it is easy to overlook that rare diseases also pose a significant challenge. According to the definition, a disease in the EU is considered rare if fewer than five out of 10,000 people are affected. With over 7,000 different rare diseases worldwide, these 'individual cases' are anything but rare as a whole. In Germany alone, four million people are affected. However, only 5% of these rare diseases have approved medications. Alexion, an AstraZeneca subsidiary and a specialist in rare diseases, has set out to change this.
Wirtschaftsforum: Mr. Passalacqua, what exactly is the mission of Alexion?
Andrea Passalacqua: Our mission is to help people with rare diseases to improve or extend their lives. Through our medications, but also through activities like the change4RARE initiative (www.change4RARE.com). Here, we try to speak with all stakeholders of the German healthcare system, more than that, we aim to bring them all together. Generally, the German healthcare system is very well positioned internationally. At Alexion, we have an international perspective and understand very well what the system needs. Unfortunately, the various actors in the German healthcare system often do not work together, but even against each other. Politics must work together with the economy, with research, with doctors and clinics. Therefore, we will steadily drive forward the change4RARE initiative in the near future. The next federal government must finally address this issue: The enormous unmet medical need for rare diseases requires big ideas and political will to shape policy.
Wirtschaftsforum: What are some examples of such problems?
Andrea Passalacqua: Diagnosis is one problem. On average, it takes almost five years for a rare disease to be diagnosed. Affected individuals often have to undergo an odyssey of visits to various doctors and clinics. And then, there is no therapy for over 90% of these diseases. This is tragic and we want to improve this. That is why we are heavily involved in medical education. General practitioners are typically faced with a rare disease only once or twice in their professional lives. Accordingly, it is difficult for them to recognize these diseases.
Wirtschaftsforum: To what extent can digitalization drive improvements here?
Andrea Passalacqua: It is very important, for example, for establishing a referral system. Based on databases, diseases can be identified from blood values or ideas may be derived about the direction in which doctors could think. The results of genetic tests can also contribute to the identification of rare diseases. 80% of rare diseases have a genetic cause. Accordingly, examinations such as newborn screenings will become more important in the future. We are always looking for new technologies and young companies, often biotech start-ups, that can help us reduce the time to diagnosis. In all these topics, digitalization and artificial intelligence will play a major role in the future.
Wirtschaftsforum: What rare diseases has Alexion already developed drugs for?
Andrea Passalacqua: We are a global leader in the field of complement biology and have launched two inhibitors for the treatment of complement-induced diseases. We also have two very innovative enzyme replacement therapies for patients with life-threatening rare metabolic disorders and the first-ever drug for the treatment of symptomatic, inoperable plexiform neurofibromas in our portfolio. And our pipeline is full: we plan to introduce five more drugs for rare diseases by 2030.
Wirtschaftsforum: Mr. Passalacqua, you have been responsible as Managing Director for Alexion Pharma Germany since January 2024. What strategic and operational impulses can and do you want to give?
Andrea Passalacqua: Before taking over the management for Germany, I worked for various pharmaceutical companies in other sectors and countries. I have Italian and Swiss citizenship and have worked in both countries as well as overseas, in China and the USA. This means I am familiar with the healthcare systems of different countries and can make comparisons. I would like to bring this experience into my role. My focus is both strategic and operational. For example: what can a sustainable healthcare system look like in the future? Here, the patient must be at the center of all considerations. Improving the lives of people living with rare diseases is therefore not only the drive of our company, but also my personal motivation. Accordingly, I drive forward both operational and strategic themes to fulfill our mission.