Social pharmaceutical innovation and alternative forms of research, development and deployment for drugs for rare diseases

Rare diseases are associated with difficulties in addressing unmet medical needs, lack of access to treatment, high prices, evidentiary mismatch, equity, etc. While challenges facing the development of drugs for rare diseases are experienced differently globally (i.e., higher vs. lower and middle income countries), many are also expressed transnationally, which suggests systemic issues. Pharmaceutical innovation is highly regulated and institutionalized, leading to firmly established innovation pathways. While deviating from these innovation pathways is difficult, we take the position that doing so is of critical importance. The reason is that the current model of pharmaceutical innovation alone will not deliver the quantity of products needed to address the unmet needs faced by rare disease patients, nor at a price point that is sustainable for healthcare systems. In light of the problems in rare diseases, we hold that re-thinking innovation is crucial and more room should be provided for alternative innovation pathways. We already observe a significant number and variety of new types of initiatives in the rare diseases field that propose or use alternative pharmaceutical innovation pathways which have in common that they involve a diverse set of societal stakeholders, explicitly address a higher societal goal, or both. Our position is that principles of social innovation can be drawn on in the framing and articulation of such alternative pathways, which we term here social pharmaceutical innovation (SPIN), and that it should be given more room for development. As an interdisciplinary research team in the social sciences, public health and law, the cases of SPIN we investigate are spread transnationally, and include higher income as well as middle income countries. We do this to develop a better understanding of the social pharmaceutical innovation field’s breadth and to advance changes ranging from the bedside to system levels. We seek collaborations with those working in such projects (e.g., patients and patient organisations, researchers in rare diseases, industry, and policy makers). We aim to add comparative and evaluative value to social pharmaceutical innovation, and we seek to ignite further interest in these initiatives, thereby actively contributing to them as a part of our work

Is COVID-19 a turning point for the health workforce?

This is the final version. Available on open access from Pan American Health Organization via the DOI in this recor

Prevalence of Trypanosoma cruzi infection among Bolivian immigrants in the city of São Paulo, Brazil

With the urbanisation of the population in developing countries and the process of globalisation, Chagas has become an emerging disease in the urban areas of endemic and non-endemic countries. In 2006, it was estimated that the prevalence of Chagas disease among the general Bolivian population was 6.8%. The aim of the present study was to determine the prevalence of Trypanosoma cruzi infection among Bolivian immigrants living in São Paulo, Brazil. This study had a sample of 633 volunteers who were randomly selected from the clientele of primary care units located in the central districts of São Paulo, Brazil. Infection was detected by two different ELISA assays with epimastigote antigens, followed by an immunoblot with trypomastigote antigens as a confirmatory test. The prevalence of the infection was 4.4%. Risk factors independently associated with the infection were: a history of rural jobs in Bolivia, knowledge of the vector involved in transmission, and having relatives with Chagas disease. Brazil has successfully eliminated household vector transmission of T. cruzi, as well as its transmission by blood transfusion. The arrival of infected immigrants represents an additional challenge to primary care clinics to manage chronic Chagas disease, its vertical transmission, and the blood derivatives and organ transplant programs

Social pharmaceutical innovation and alternative forms of research, development and deployment for drugs for rare diseases

Rare diseases are associated with difficulties in addressing unmet medical needs, lack of access to treatment, high prices, evidentiary mismatch, equity, etc. While challenges facing the development of drugs for rare diseases are experienced differently globally (i.e., higher vs. lower and middle income countries), many are also expressed transnationally, which suggests systemic issues. Pharmaceutical innovation is highly regulated and institutionalized, leading to firmly established innovation pathways. While deviating from these innovation pathways is difficult, we take the position that doing so is of critical importance. The reason is that the current model of pharmaceutical innovation alone will not deliver the quantity of products needed to address the unmet needs faced by rare disease patients, nor at a price point that is sustainable for healthcare systems. In light of the problems in rare diseases, we hold that re-thinking innovation is crucial and more room should be provided for alternative innovation pathways. We already observe a significant number and variety of new types of initiatives in the rare diseases field that propose or use alternative pharmaceutical innovation pathways which have in common that they involve a diverse set of societal stakeholders, explicitly address a higher societal goal, or both. Our position is that principles of social innovation can be drawn on in the framing and articulation of such alternative pathways, which we term here social pharmaceutical innovation (SPIN), and that it should be given more room for development. As an interdisciplinary research team in the social sciences, public health and law, the cases of SPIN we investigate are spread transnationally, and include higher income as well as middle income countries. We do this to develop a better understanding of the social pharmaceutical innovation field’s breadth and to advance changes ranging from the bedside to system levels. We seek collaborations with those working in such projects (e.g., patients and patient organisations, researchers in rare diseases, industry, and policy makers). We aim to add comparative and evaluative value to social pharmaceutical innovation, and we seek to ignite further interest in these initiatives, thereby actively contributing to them as a part of our work.Pharmaceutical Sciences, Faculty ofNon UBCReviewedFacultyResearche