Dear STS Community,
<br>
<br>We are pleased to invite contributions to panel 142 Rare Disease Policies:
<br>From Exceptionalism Towards a New Normal? at the upcoming EASST-4S meeting
<br>in Prague (https://www.easst4s2020prague.org/). Description of the panel is
<br>below.
<br>
<br>Rare diseases have been a distinct area of public health policy in many
<br>countries since the 1980s. STS researchers have documented the establishment
<br>of this policy domain and the associated formation of orphan drug policies
<br>that have resulted from negotiations, struggles and collaborations between
<br>patient organizations, doctors and researchers, regulators, as well as the
<br>pharmaceutical and biotech industries and lobbies. Yet, interpretations differ
<br>as of the nature and transformative effects of these partnerships, conflicts
<br>and policies. Some stress the successful role of patient organizations as a
<br>decisive driver in addressing the unmet medical needs of rare disease patients
<br>by improving availability and access to treatments. On the other hand critics
<br>argue that rare disease policies can be seen as form of exceptionalism which
<br>is being gamed by the pharmaceutical and biotech industry for commercial
<br>reasons. By slicing common diseases into multiple rare diseases and lowering
<br>the barriers to market introduction of new products parts of the pharma and
<br>biotech industry seek to create and monopolize highly profitable niche
<br>markets.
<br>
<br>The struggles over rare disease policies and orphan drug regulation have not
<br>subsided with their institutionalization; rather things have intensified.
<br>Public controversies about Big Pharma and excessively high pricing fuel the
<br>debate on an almost daily basis. On top of cost considerations, the advent of
<br>personalized medicine, digital medicine and advanced therapy medicinal
<br>products (ATMPs) potentially means an increasing orphanization of common
<br>diseases in the immediate future. Gene therapy, tissues engineering, cell
<br>therapies and other ATMP products may lead to individualization of care but
<br>also to enormous problems of affordability, accessibility and inequality. This
<br>leads to questions about new business models in pharmaceutical innovation and
<br>newer alternative forms of non-commercial innovation. It also raises concerns
<br>about (un)affordability for citizens, about regulatory policies and about the
<br>sustainability of inclusive health care insurance systems. Where rare disease
<br>and orphan drug policies -once considered exceptional- stand in this
<br>landscape is worth further exploration, especially in connection with the
<br>wider transformations in medical care, policy and pharmaceutical innovation.
<br>Remarkably similar developments suggest that the exceptional is becoming the
<br>new normal. What does this imply for future inclusive health care, for
<br>possible alternative forms of social innovation in health care policies and
<br>pharmaceutics?
<br>
<br>These outstanding questions make expanded and deepened STS analysis of rare
<br>disease policies necessary. The panel invites contributions from different
<br>national and regional contexts, dealing with rare and more common diseases,
<br>and entertaining varying intellectual perspectives.
<br>
<br>Area of STS Scholarship include: Governance and Public Policy; Genetics,
<br>Genomics, Biotechnology; Economics, Markets, Value/Valuation
<br>
<br>Keywords: rare diseases, rare disease policy, pharmaceutical innovation
<br>
<br>To submit your proposals, visit
<br>https://www.easst4s2020prague.org/call-for-papers-and-panels/ , scroll down to
<br>the How to Submit section which takes you to the program website and log in
<br>with your 4S credentials.
<br>
<br>We look forward to seeing you there.
<br>
<br>Session Organizers: Conor Douglas - York University, Canada
<br>(cd512@yorku.ca); Rob Hagendijk, University of
<br>Amsterdam, Netherlands (R.P.Hagendijk@uva.nl )
<br>
<br>
<br>
<br>
<br>
<br>All the best,
<br>
<br>Conor Douglas
<br>Assistant Professor
<br>Department of Science and Technology Studies, Faculty of Sciences
<br>307 Bethune College |York University | 4700 Keele St. | Toronto ON, Canada
<br>M3J 1P3
<br>Tel: 416.736.2100 extension 30104| cd512@yorku.ca |
<br>https://sts.info.yorku.ca/dr-conor-douglas/
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