Haematology is the area of medicine dealing with diseases of the blood.
The blood system is complex. It has important transport functions, delivering nutrients, oxygen and other essential substances as well as hormones and other signal substances to cells in almost every part of the body, and transporting waste products away from those cells. The white blood cells have an important role for the immune system protecting against foreign threats as bacteria, and other infectious agents. The blood system thus has a central role in the body, working together with many other systems.
The area of haematology covers a wide range of diseases and problems, including those involving red and white blood cells, coagulation and platelets, and bone marrow. Some diseases of the blood are malignant, involving cancer, while others are benign.
Haemophilia is a type of bleeding disorder in which the blood does not clot properly. Appropriate management aims to help people with haemophilia to live full, healthy and active lives, with the same opportunities as anyone else.
Together with Sanofi, we provide extended half-life recombinant replacement clotting factor treatments for haemophilia A and haemophilia B. Our ambition in haemophilia is to enable access to our treatments for everyone in our territory – Europe, most countries in the Middle East, North Africa and Russia – who has a need. Through our partnership with Sanofi and the wider haemophilia community, we are actively seeking to find solutions for the challenges facing all people with haemophilia.
In the summer of 2018, we undertook a large-scale, pan-European ethnographic study of the lives of 51 people living with haemophilia. These people, as well as their families, were monitored by researchers for 1-2 days, while 18 healthcare providers and five haemophilia experts were interviewed for further understanding. This in-depth research provided the main insights that inspired our vision for haemophilia: Liberate Life.
For decades haemophilia treatment has been focused on ensuring survival and stability — working towards moving patients out of the untreated “danger zone” and with the primary aim of their treatment to allow them to live a stable life.
We have come a long way since then, and with current treatment options, we can turn our attention to achieving what is now possible: treating people with haemophilia so they can live their lives to the fullest. This means that rather than just keeping them safe, we start taking their dreams and ambitions seriously and turn them into reality.
Liberate Life is Sobi’s way of supporting and empowering people living with haemophilia. It represents our commitment to challenging the status quo of conventional treatment methods, and to creating better possibilities through better care. Liberate Life is based on the fundamental criteria that treatment should always allow people living with haemophilia to feel safe, be protected from bleeds, have long-term joint health protection and feel unburdened by haemophilia. It is through this vision that this special group of people can liberate life by enjoying a life beyond haemophilia.
Committed to improving access worldwide
Only around 25 per cent of people living with haemophilia globally have access to adequate treatment[i]. We don’t accept this situation, so we are working with key stakeholders to improve access to sustainable treatment around the world. Two key initiatives in this commitment are the World Federation of Hemophilia’s (WFH) Humanitarian Donation Program and the European Haemophilia Consortium’s PARTNERS programme.
As visionary contributors for the WFH donation programme, Sobi and Sanofi Genzyme have committed to donate 1 billion international units of our EHL factor treatments to the haemophilia community, of which 500 million IUs has been committed to the WFH Humanitarian Donation Program over a five-year period which started in 2015. As well as treatment and the necessary transportation, we are supporting the programme’s efforts to build up infrastructure and expertise in the recipient countries. This will enable them to provide ongoing, sustainable treatment for people with haemophilia.
The European Haemophilia Consortium (EHC) PARTNERS programme is designed to improve access to treatment in countries in Central and Eastern Europe which currently have insufficient budgets to provide sustainable access to the level recommended by the European Directorate for the Quality of Medicines and Healthcare (EDQM)[ii].
Sobi was one of the two founding corporate partners in the programme, which aims to provide subsidised treatment to countries which commit to increasing their investment in haemophilia to ensure sustainable access to treatment. We are pleased to see other companies now agreeing to support the PARTNERS programme.
In developed countries in our territory, we work together with the healthcare systems to apply a pricing strategy based on annual parity to conventional treatments available on the market. This means that our products can reach everyone with haemophilia without any significant extra cost and no additional barriers.