One of our core responsibilities is to use our specialist knowledge to increase understanding and raise awareness of the little-known diseases that our medicines treat.
Actelion continues to strengthen collaboration with patient organizations around the world – to gain deeper insights into patients’ day-to-day needs and the challenges they face across many disease states.
Actelion works closely with a number of patient and professional organizations in Australia. Groups that support patients include the Lung Foundation (http://lungfoundation.com.au/), Pulmonary Hypertension Association Australia (http://www.phaaustralia.com.au/) and Scleroderma Australia (www.sclerodermaaustralia.com.au). We ensure that patient materials are reviewed by these groups so that we are providing the best information available.
In addition, we are about to embark on a landmark Patient and Carer survey in Australia. Between 2010 and 2012, Actelion sponsored a European steering committee of PAH experts (comprising both healthcare professionals and representatives from global PAH patient organizations) established to develop an International PAH Patient and Carer survey. The goal of the survey was to provide new insights into the wider impact of PAH on patients and carers, beyond the clinical definition of the physical burden of the disease – a topic which has not been extensively researched in the past. Four main areas were explored: the physical and practical impact, the emotional impact, the financial impact, and the information needs of this patient group. The aim of the survey was to gain a better understanding of PAH patients’ and carers’ experience of living with the disease, and to inform ongoing research in the area, so as to develop a compelling case for providing more comprehensive support for PAH patients and their carers in the future.
This survey has been conducted in a number of countries and during 2015-2016, it will be undertaken in Australia. We anticipate that the results of the survey will provide invaluable insights into the substantial global impacts – physical, practical, emotional and social – of PAH on patients and their carers. Our aim is to work with patient associations to use local findings to improve the care and quality of life of patients, families and their support networks.
Providing sustainable access to healthcare for all those who need it remains a significant global challenge. We continue to support needy patients through patient access programs, and to work with government and other stakeholders to widen access in geographies around the world.
In Australia, we support patients by providing assistance to access PAH medicines for eligible patients, while ensuring full compliance with local laws and regulations.
PATIENT ORGANIZATION SUPPORT
Patient organizations can be an important support network and source of information for patients who are living with illnesses. They are non-profit organizations that help to raise awareness of treatment options and advocate for better patient care.
Actelion believes that patient organizations should be independent, and we abide by the relevant codes of practice for interacting with patient organizations.
Actelion has either provided grants or given donations to the following patient organizations:
See Downloads below