Patients speak out on global health and innovation
Geneva, Switzerland (May 15, 2008) – On the eve of the 61st World Health Assembly, patient representatives from around the world gathered in Geneva to voice their concerns and provide recommendations on the WHO’s proposed strategy and draft plan of action on public health, innovation and intellectual property.
“As patients, one of our key concerns is to assure that the WHO strategy does not undermine the only system of discovery and innovation that has produced every life saving drug that is available in the world today” said Durhane Wong-Rieger, Chair of the Consumer Advocare Network (Canada).
Patients are also concerned that the real barriers to access have been ignored in this discussion.
“The focus of the IGWG’s discussion should not be on intellectual property, but rather long-term solutions to developing country health care which requires a multi-faceted approach that tackles poverty, lack of infrastructure, lack of health care workers and access to basic necessities such as clean water and food,” said Regina Kamoga, Country Manager, Uganda, Community Health and Information Network (CHAIN Uganda).
“Moving forwards it is essential that the WHO not proceed with recommending changes to international patent protection (IPP) as it relates to medical R&D and healthcare until there is assurance that there is adequate infrastructure and oversight in developing countries.” said K.P. Tsang, President of Retina Hong Kong.
To highlight patient concerns about the IGWG process, a Patient Declaration on Medical Innovation and Access was unveiled. Signed by over 110 patients and patient representatives from 26 countries around the world, the Patient Declaration recommends that the WHO:
- Ensure effective healthcare infrastructure in developing countries to prevent disease and optimize use of medicines;
- Support strategies to improve access to safe treatments;
- Ensure strong incentives for continued R&D and innovation;
- Ensure continued incentives for R&D into neglected disorders - both rare diseases and those affecting developing countries;
- Fully engage patients and their representatives in the IGWG process from this moment forward; and
- Investigate and adopt other access initiatives such as the GAVI Alliance and public-private partnerships.
The meeting concluded with patients urging the World Health Assembly and the World Health Organization to recognize that patients are the ultimate stakeholder in health related issues and to directly engage patients in this important discussion. Other groups, however well intentioned, do not speak on behalf of patients.
This patient meeting was supported by PhRMA, which shares the stakeholders’ views on the need for a comprehensive approach to providing health care and innovative medicines in developing countries.
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Patient Declaration on Medical Innovation and Access
The Patient Declaration is available at www.patientsandpatents.com – a patient-driven and patient-focused resource whose goal is to inform and engage patient groups, advocates and other stakeholders from around the world on issues surrounding medical innovation and access to treatments.
