However, with the lack of appropriate regulatory processes or the presence of ‘relaxed’ legal frames pertaining to the manufacturing and/or authorisation and/or monitoring and reporting of adverse reactions or side effects, in still many countries across the world, including in the MENA countries, the safety and effectiveness of generic drugs cannot be ensured. Moreover, in this region of the world, where patency protection is not respected, “copy” or “copied” drugs are produced and which are associated with even greater concerns and risks. In the case of thalassaemia, where, in most of the countries of this region, as well as other regions of the world, appropriate tools to monitor accurately and specifically, iron overload and thus the effectiveness of the iron chelation treatment are lacking, the level of contribution of the generic or “copy” drugs to any treatment ineffectiveness may not be easy to determine or assess. Advocating for changes to happen requires collaborations and knowledge, both on behalf of health professionals, and patients and their families, and certainly of the communities at large, each of which may potentially become a patient to use generic drugs. For the purpose of preparing for this meeting, a survey was conducted by TIF, through the dissemination of two questionnaires, one addressed to patients/parents and the other to the health professionals involved in the care of the disease, on a worldwide basis. The most striking key conclusion stemming from this survey was evidently the very ‘confined’ knowledge on behalf of the patients/parents (relating to the ‘truths’ and ‘myths’) and to a very big extent of the health professionals, across disciplines, on generic drugs and the regulatory policies, binding their manufacturing and authorization. It is thus of utmost importance for health professionals and patients’ organisations to engage, in a very coordinated way, in raising awareness and educational campaigns. In addition, it is also of primal importance to establish close and meaningful collaborations and networks with decision makers and relevant stakeholders at the national, regional and international level. Below, two maps shown underline the spread of drugs with poor quality, raising grave concerns for the patients’ populations: Map 1: The quality of medicines varies greatly, and not just in low- and middle-income countries
Sources: Various Media
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