Press release: It's time for drug regulators and patient groups to work together

Tuesday, 26 August 2014

There was widespread consensus that drug regulators and patient groups need to work more closely together in Latin America at a multi-stakeholder seminar held in Rio de Janeiro, Brazil yesterday.

The International Alliance of Patients’ Organizations (IAPO) and Allianza Latina convened a debate with leading health figures to discuss the contribution of patients and patients’ organizations in drug regulation to ensure patients receive access to safe and quality healthcare. 

Around 100 health experts, including those from patients’ organizations, drug regulatory authorities, government, academia and industry discussed the critical role that patients must play in drug regulation to work towards universal health coverage – where every person has the access to the health services they need.

Eva Maria Ruiz de Castilla, Governing Board Member of IAPO said: ‘All healthcare should listen to the patient voice and drug regulation is no exception. We call on all drug regulatory authorities to take every step needed towards putting patients first.’

Experts such as Aline Silveira, from the Brazilian Ministry of Health, Jose Luis Castro, from the Pan American Health Organization and World Health Organization, and patient advocate Tiago Farina, from the Instituto Oncoguia, Brazil, led discussions on the pressing issues facing drug regulation today. The speakers reaffirmed that we will all be patients, if not now, then one day, and that patients are the experts in their own health.

Patient organizations, drug regulatory authorities and many more debated how including patients at all stages of regulation could improve safety and access to treatment. It was recognised that patient’s knowledge of scientific and regulatory processes should not be a barrier to patient engagement in decision-making but that governments and patient groups should increase efforts to educate and empower patients so they can meaningfully engage individually and collectively in healthcare design and delivery. 

The meeting was hosted by the International Alliance of Patients’ Organizations and Alianza Latina, who represent patients all over the world. Carolina Cohen, from Alianza Latina, said: ‘This meeting was a great success. From now on we expect to see patients and drug regulatory authorities working hand in hand to achieve better healthcare for all.’

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Notes to Editors

About the International Alliance of Patients’ Organizations (IAPO)

IAPO is a global alliance of over 240 patients' organizations representing 66 countries worldwide. IAPO works in a creative and innovative way towards its vision of ​patient-centred healthcare and has a network that connects an estimated 365,000,000 patients worldwide. They are in official relations with the World Health Organization and have special consultative status with the United Nations Economic and Social Council, collaborating on a number of important healthcare issues including non-communicable diseases (NCDs) and patient safety.

About Alianza Latina

Alianza Latina is a network established in 2006, with the aim of representing and empowering non-profit organizations that support people living with diseases. Currently, the network is made up of more than 60 organizations, present in 20 countries in Latin America, United States, Portugal and Spain. Their mission is to promote the empowerment, professionalization and cooperation between patient support organizations, aiming to continuously improve the quality of life of people living with diseases.

Further Information

Please contact Ian Ford, Communications Officer at IAPO, via email, call +44 20 7250 8282 or refer to the IAPO website for more information.