Message posted on 21/01/2020

Rare Disease Policies: From Exceptionalism Towards a ‘New Normal’ – Call for Papers at EASST-4S in Prague

Dear STS Community,

We are pleased to invite contributions to panel 142 Rare Disease Policies:
From Exceptionalism Towards a New Normal? at the upcoming EASST-4S meeting
in Prague (https://www.easst4s2020prague.org/). Description of the panel is
below.

Rare diseases have been a distinct area of public health policy in many
countries since the 1980s. STS researchers have documented the establishment
of this policy domain and the associated formation of orphan drug policies
that have resulted from negotiations, struggles and collaborations between
patient organizations, doctors and researchers, regulators, as well as the
pharmaceutical and biotech industries and lobbies. Yet, interpretations differ
as of the nature and transformative effects of these partnerships, conflicts
and policies. Some stress the successful role of patient organizations as a
decisive driver in addressing the unmet medical needs of rare disease patients
by improving availability and access to treatments. On the other hand critics
argue that rare disease policies can be seen as form of exceptionalism which
is being gamed by the pharmaceutical and biotech industry for commercial
reasons. By slicing common diseases into multiple rare diseases and lowering
the barriers to market introduction of new products parts of the pharma and
biotech industry seek to create and monopolize highly profitable niche
markets.

The struggles over rare disease policies and orphan drug regulation have not
subsided with their institutionalization; rather things have intensified.
Public controversies about Big Pharma and excessively high pricing fuel the
debate on an almost daily basis. On top of cost considerations, the advent of
personalized medicine, digital medicine and advanced therapy medicinal
products (ATMPs) potentially means an increasing orphanization of common
diseases in the immediate future. Gene therapy, tissues engineering, cell
therapies and other ATMP products may lead to individualization of care but
also to enormous problems of affordability, accessibility and inequality. This
leads to questions about new business models in pharmaceutical innovation and
newer alternative forms of non-commercial innovation. It also raises concerns
about (un)affordability for citizens, about regulatory policies and about the
sustainability of inclusive health care insurance systems. Where rare disease
and orphan drug policies -once considered exceptional- stand in this
landscape is worth further exploration, especially in connection with the
wider transformations in medical care, policy and pharmaceutical innovation.
Remarkably similar developments suggest that the exceptional is becoming the
new normal. What does this imply for future inclusive health care, for
possible alternative forms of social innovation in health care policies and
pharmaceutics?

These outstanding questions make expanded and deepened STS analysis of rare
disease policies necessary. The panel invites contributions from different
national and regional contexts, dealing with rare and more common diseases,
and entertaining varying intellectual perspectives.

Area of STS Scholarship include: Governance and Public Policy; Genetics,
Genomics, Biotechnology; Economics, Markets, Value/Valuation

Keywords: rare diseases, rare disease policy, pharmaceutical innovation

To submit your proposals, visit
https://www.easst4s2020prague.org/call-for-papers-and-panels/ , scroll down to
the How to Submit section which takes you to the program website and log in
with your 4S credentials.

We look forward to seeing you there.

Session Organizers: Conor Douglas - York University, Canada
(cd512@yorku.ca); Rob Hagendijk, University of
Amsterdam, Netherlands (R.P.Hagendijk@uva.nl )





All the best,

Conor Douglas
Assistant Professor
Department of Science and Technology Studies, Faculty of Sciences
307 Bethune College |York University | 4700 Keele St. | Toronto ON, Canada
M3J 1P3
Tel: 416.736.2100 extension 30104| cd512@yorku.ca |
https://sts.info.yorku.ca/dr-conor-douglas/
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