Charities Commission Registration CC22512

NZORD represented at International Alliance of Patients' Organisations meeting on medicines innovation and access

NZORD is a member of IAPO, the International Alliance of Patients' Organisations, and recently participated in a meeting they convened about medicine access, in conjunction with a World Health Organisation Intergovernmental working group considering the topic. Dr Marie Bismark, a Wellington lawyer who specialises in health law, patient rights, and bioethics, travelled to Geneva on behalf of NZORD, ensuring that New Zealand patients with rare disorders were represented at this important meeting. This is her report.

Despite enormous progress in the prevention, diagnosis and treatment of disease, the lack of safe and effective medications still remains a critical issue for many patients around the world. In November 2007, a World Health Organisation working group met in Geneva to discuss a global strategy on innovation, intellectual property, and public health, aimed at helping to support innovation in pharmaceutical research and improve global access to medicines.

International pharmaceutical policy is a complex area at the best of times, with multiple stakeholders, competing interests, and many lives at stake. In order to support patient groups to engage effectively with the work of the Working Group, the International Association of Patients' Organisations (IAPO) organised a one day seminar where patient representatives from more than 15 countries had an opportunity to learn about key issues, gain an understanding of WHO processes, and question experts.

According to Marie: “The seminar provided a welcome opportunity for patient organisations from around the world to share lessons and challenges from their home countries, identify common aims, and reach agreement on how best to engage with the WHO Working Group process.” During the seminar, the importance of improved treatments for diseases such as HIV, tuberculosis, and malaria was agreed by all. At the same time, there was strong recognition that rare diseases can also be neglected under existing pharmaceutical policies, and that increased innovation and access to medicines is an issue in developed as well as developing countries.”

Over the following days, Marie formed part of an IAPO delegation who attended the WHO Intergovernmental Working Group meeting as NGO observers. The lack of patient involvement in developing the Working Group’s draft plan of action was of profound concern to both NZORD and IAPO. As an organisation in “official relations” with WHO, IAPO had the opportunity to make the following statement to the Working Group:

IAPO statement to the IGWG
"Thank you Chair, we are grateful that we have the opportunity today, to comment on the work of the IGWG.  IAPO compliments the WHO on its important work and strongly support the aims of the IGWG to develop a global strategy to address the lack of safe and effective medications for many patients around the world.  IAPO is an organization representing patients from all disease areas and nationalities around the world and promoting patient-centred healthcare.  Through our 200 members we represent an estimated 365 million patients worldwide.

The International Alliance of Patients’ Organizations (IAPO) requests that patients and patients’ organizations are recognised as the main stakeholder in the global strategy and plan of action – to be brought to the centre of this work.  Decisions affecting patients are taken in consultation with patients as the decisions made affect their lives.  In addition for this initiative to be successful in its implementation it will depend on engagement with patients’ organizations and patients themselves at all stages of the work from the development of strategies through to their delivery.

Many patients’ organizations around the world are already working on these issues and there is potential for governments to work more closely with patients’ organization in this work to attain better outcomes. Therefore we request that patients and patients’ organizations are added to the list of stakeholders throughout the draft strategy and plan of action in every section."

Once the strategy and plan of action have been finalised, individual member countries will play a critical role in implementing changes. NZORD will continue to keep its members informed about significant developments in pharmaceutical policy and, as always, we welcome your involvement in ensuring that our voices continue to be heard in this important area.