Understanding medical needs and the healthcare environment

By working with patient groups, we aim to increase awareness around areas of significant unmet medical need. For example, in 2005 Novartis provided an unrestricted grant to asthma patient groups in Europe to develop a massive survey of patients with severe asthma. Called Fighting for Breath, the survey found that one in five asthma patients lived in fear that they would die after their next attack. Published in the medical journal, Allergy, in 2007, the results were lauded for helping raise awareness about current treatments and the need to do more. The study has since been repeated in individual countries in Europe.

In February 2008, Novartis co-sponsored the International Alliance of Patients’ Organizations’ third Global Patient Congress. Held in Budapest, Hungary, the congress attracted more than 180 delegates from around the world, including patients, representatives from the European Commission and the World Health Organization (WHO) and global health professionals' associations.

In 2005, Novartis collaborated with the International Diabetes Federation Europe and the Federation of European Nurses in Diabetes to produce a Diabetes Audit of EU member states, aimed at increasing the awareness of diabetes prevalence in Europe. The report led to the adoption in May 2006 of A Written Declaration on Diabetes by the EU Parliament, declaring type 2 diabetes a priority disease in the EU and calling on countries to develop national diabetes plans to combat the growing epidemic. In 2007, Novartis organized round-table meetings in several European countries at which medical, political, and patient group leaders met to continue to raise awareness of the burden of diabetes and call for increased action to prevent and better manage the illness.

Novartis and its then alliance partner, the biopharmaceutical company Idenix, reached out to 16 hepatitis patient organizations in April 2007 at the second European Novartis/Idenix Hepatitis Patient Group meeting. The companies and patient groups focused on improving the standards of care, strengthening critical skills in advocacy and developing programs to improve patients’ access to medicines and other healthcare.
In co-operation with the United States’ National Osteoporosis Foundation (NOF) and the International Osteoporosis Foundation, Novartis organized the first Novartis Osteoporosis Patient Group Advisory Board meeting in December 2007. Attended by representatives of 12 patient groups in the field of osteoporosis, the meeting reviewed access to diagnosis and treatments, and overall levels of care, for osteoporosis patients in 7 European countries, Canada, the US and China. Intensive discussions on how to improve the situation took place. In view of the importance of the topics discussed, the participants agreed to meet again in Q2 2008 in order to evaluate the progress and to agree on potential future activities.

In the US, Novartis sponsors The Blue Skies and Brickwork Summit, an annual event for patient group leaders from across the US, representing all major disease areas. The conferences help patient advocacy groups better understand the healthcare environment and hear from top academics and political leaders, and receive training to be more effective.