Interview with World Federation of Hemophilia CEO Alain Baumann

CSL Behring’s Jens Oltrogge recently sat down with Alain Baumann to talk about World Hemophilia Day and some of the challenges facing the bleeding disorder community.

April, 11 2016

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CSL Behring: How did World Hemophilia Day come into being?
Baumann: The World Federation of Hemophilia (WFH) established World Hemophilia Day in 1989 to bring the bleeding disorder community together on April 17, the birthday of WFH founder Frank Schnabel. World Hemophilia Day is observed around the world annually. The goal is to bring the bleeding disorders community together and increase the awareness of hemophilia and other inherited bleeding disorders.

CEO Alain Baumann

World Federation of Hemophilia CEO Alain Baumann
CSL Behring: What is the main focus this year for World Hemophilia Day?
Baumann: This year our focus is on bringing attention to a challenge that too many people in the bleeding disorder community face: lack of access to treatment and care.
CSL Behring: How is the WFH working to overcome inadequate access to treatment and care?
Baumann: The WFH has been working to close the gap in hemophilia care between developing and developed countries through the Global Alliance for Progress (GAP) in hemophilia, which we established in 2003. The primary goal of GAP is to significantly increase the diagnosis and treatment of people with hemophilia and other bleeding disorders in developing countries.
CSL Behring: What were the results?
Baumann: After more than 14 years, the GAP program has brought demonstrable change in each of the countries where it has had projects, and it has led to significant and measurable improvements worldwide in the management of hemophilia and other bleeding disorders. Since 2003, 31 countries have been enrolled in the GAP Program. Today, GAP continues to be extremely effective in identifying new people with hemophilia and other bleeding disorders. In 27 GAP target countries, data collected from 2003 to 2015, which examined whether we were in fact identifying more people with bleeding disorders, indicates a cumulative increase of 28,785 people with hemophilia, 4,667 people with von Willebrand Disease and 3,022 with other bleeding disorders.
CSL Behring: Can you provide additional perspective on the first 14 years?
Baumann: The GAP Program has substantially improved the care delivery systems in many countries and increased the level of government support for hemophilia by building on a combination of existing conditions, such as an established patient organization, key dedicated health care providers, and the potential for government commitment to improve care. Bleeding disorder care has also been improved through the establishment of comprehensive hemophilia treatment centers, the commencement or expansion of national patient registries, and the development of national treatment protocols.
Bleeding Disorder Patients

Care for patients of all ages has improved through comprehensive hemophilia treatment centers, national patient registries and national treatment protocols.
CSL Behring: Are there lessons learned that will be useful going forward?
Baumann: We have learned a number of lessons over the years. For example, it often takes more than a year to prepare a country for GAP because the program needs to be developed in a way that is appropriate and respectful of a country. In other words, we need to be aware of cultural, social and political norms, national political pride, and specific healthcare systems. Doctors and patients need to be aligned and buy into the program, and patient organization leadership and lobbying skills are essential for a successful program.
CSL Behring: How important to the GAP program are donations of factor product from companies such as CSL Behring?
Baumann: Approximately 75% of people with hemophilia worldwide either do not receive care, or receive very limited care, particularly in terms of clotting factor concentrates. When companies such as CSL donate factor products to these countries, they not only help people with hemophilia during bleeding episodes, but they also enable lifesaving and limb-saving surgeries to be performed. CSL was the first biotherapies company in the world to make a multiyear commitment to WFH to aid the GAP Program with humanitarian aid coagulation factor donations over an extended period of time.
CSL Behring: In 2013, WFH renewed the GAP Program for a second decade. What are WFH’s goals through 2023?
Baumann: We renewed GAP in order to continue to work on closing the gap in care for people with bleeding disorders in 20 new target countries. The focus is on improving diagnosis for all bleeding disorders, improving treatment in the world’s poorest regions, and building on our achievements to date. The overarching goals for the second decade of GAP are increasing the worldwide number of people identified and diagnosed with bleeding disorders by 50,000, and ensuring that 50% of those newly diagnosed are from the world’s most impoverished countries. CSL supports WFH’s mission to improve diagnosis and treatment access. Since its first donation in 2009, CSL has provided nearly 14 million IUs of its bleeding disorder protein therapies to treat people with hemophilia or von Willebrand disease in developing countries.
CSL Behring: How would you describe the gap in care that exists today compared with when GAP was launched in 2003?
Baumann: Much remains to be done. The reality is that 75 per cent of people with bleeding disorders still receive very inadequate treatment or no treatment at all. The WFH’s vision of “treatment for all” means that one day, all people with a bleeding disorder will have proper care, regardless of their location or age. To achieve this goal we will continue to advocate for adequate supply and educate people with bleeding disorders to help them live healthier, longer and more productive lives.
Child with head guard

WFH is committed to empowering people with bleeding disorders in developing countries to help them live healthier, longer and more productive lives
CSL Behring: Are you confident the leadership of the bleeding disorders community will be in good hands in years to come?
Baumann: Patient leaders are committed to passing down and sharing their knowledge and experience with each new generation of people with bleeding disorders. Many patient leaders are training and mentoring new patient leaders in their own and in neighboring countries. Through programs such as GAP, patient leaders are part of the decision-making process when advocating for improvements in hemophilia care.
CSL Behring: Closing thoughts?
Baumann: Until treatment for all becomes reality, we will continue to improve and sustain care for all people with inherited bleeding disorders. This includes partnering with all stakeholders to train experts in the field to properly diagnose and manage patients, advocate for adequate supply of safe treatment products; and educate and empower people with bleeding disorders to help them live healthier, longer and more productive lives.

It is only through a concerted effort with all those involved in our community that we can make a difference. At the same time, we continue to dream of a world in which a cure for hemophilia will one day be found.
Members of the bleeding disorder community are invited to share your stories on the 2016 World Hemophilia Day website – www.worldhemophiliaday.org.

Jens OltroggeJens Oltrogge is CSL Behring’s Therapeutic Area Head in Global Commercial Development Coagulation

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