CSL Ltd Annual Report 2021
Support for patient communities Our support for patient communities continues as a priority, with the majority of total funding directed towards programs that enhance patient quality of life, protect public health and improve access to our medicines. Some of these strategic programs are detailed below. CSL Behring Bleeding disorders CSL Behring sponsored the first ever Virtual Summit of the World Federation of Haemophilia (WFH) in June 2020. WFH is an international not-for-profit organisation that works to improve the lives of people with haemophilia and other inherited bleeding disorders, and CSL Behring is proud to be a long-term partner with the WFH to connect the global bleeding disorders community. CSL Behring was the first corporate partner to commit to a multi-year agreement with WFH and in 2019 announced its fourth multi-year commitment as Visionary Corporate Partner to advance programs that help improve diagnosis and access to care for patients in developing countries, provide medical training, increase awareness, establish education initiatives, and achieve government support through advocacy. CSL Behring is a WFH ‘Visionary Partner’ and has supported a number of the Federation’s programs over the years, including their Path to Access to Care and Treatment Program that aims to increase the diagnosis and treatment of patients with haemophilia and other bleeding disorders in developing countries. In addition, CSL Behring is a significant contributor to the WFH Humanitarian Aid Program’s efforts to provide consistent and predictable treatment access through product donations and financial support. As part of CSL Behring’s most recent commitment, while we promised to donate 50 million international units (IUs) of product over a three-year period, we donated almost twice that amount (US$174 million value) inclusive of both plasma-derived and recombinant therapies, ultimately helping patients in 48 countries. Empowering patient communities through education and advocacy Influenza The COVID-19 pandemic has highlighted the importance of rapid sharing of both physical samples and the genetic sequence information of pathogens to enable an effective response to pandemics and epidemics. Access and Benefit Sharing (ABS) models, including the Nagoya Protocol, pose a significant threat to our ability to do this. WHO and its member states are reviewing a number of proposals, including those for the establishment of a Pandemic Treaty and a Biohub for biological samples to ensure that access to pathogens is maintained and that there is fair and transparent sharing of the benefits with all countries. The WHO Pandemic Influenza Preparedness (PIP) Framework has been highlighted as an example of an established ABS model. Seqirus continues to play a leading role in industry interactions with WHO in this area, highlighting concerns about the PIP Framework model, raising awareness of the impact of ABS and Nagoya protocol legislation on pathogen sharing and urging for the lessons learned through the response to the COVID-19 pandemic to be incorporated into any newmechanism. We continue to work through the industry associations to track progress on these developments and to ensure that the industry perspective is presented. Commitment to donate 10% of influenza vaccine output in the event of a global pandemic. Uncovering ‘Suffering in Silence’ CSL Behring commissioned the Economist Intelligence Unit to explore the state of rare-disease understanding and management throughout the Asia-Pacific (APAC) region in 2020. The result is a paper called ‘Suffering in Silence: Assessing Rare Disease Awareness and Management in Asia-Pacific’ which takes a deep dive into the realities facing patients living with rare diseases across five APAC economies. Despite their classification as ‘rare’, these diseases affect an estimated 258 million people in APAC, approximately 50% of whom are children. This represents a significant disease burden that cannot be ignored. The report seeks to understand the rare disease landscape including complexities for healthcare professionals and governments in addressing the needs of this diverse group, as well as the perceived challenges facing rare disease patients. The hope for the report is that it will spark constructive discussions among all stakeholders in the rare disease space and will help honour CSL’s promise to improve the quality of life for rare disease patients and their families in Asia-Pacific and beyond. Commitment to raising awareness in APAC on assessing rare diseases. CSL Limited Annual Report 2020/21 55
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