[Ip-health] Pharma Foxtrot or Citizen's Samba? towards a new biomedical R&D network.

Rachel Kiddell-Monroe rachel.k.monroe at essentialmedicine.org
Fri Oct 23 13:17:24 PDT 2015

Dear IP-Health

Next week, the Open Society Foundations is hosting a meeting called
"Rethinking the economics of pharmaceutical innovation". The meetings will
be attended by a group of economists, academics and civil society actors.
OSF asked all the participants to prepare a two pager on what we think is
wrong with the current system and our thoughts on what to do about it.

Following Jamie's initiative to share the contributions, here is mine.

Take care


Rachel Kiddell-Monroe
Special Advisor
Universities Allied for Essential Medicines
"There is no such thing as the "voiceless". There are only the deliberately
silenced, and the preferably unheard." Arundhati Roy. Make your voice

"When you learn, teach. When you get, give." Maya Angelou


*Pharma Foxtrot or Citizen’s Samba? Towards a new biomedical R&D network*

*Rachel Kiddell-Monroe, October 2015*

When asked what is wrong with the pharmaceutical model today, like most of
my colleagues I can quickly run off a list of its problems. I will say that
the millions of people living without access to lifesaving treatment are
proof that the system we have today has failed. I can point to the fact it
has failed because it does not help poor people and only serves the rich. I
say it is broken because it keeps life saving medicines away from the
people who need them or simply does not even bother to innovate around the
diseases from which most people suffer.  I may add that the current system
is broken because it is inequitable and unjust because it treats medicines
as a private good that can be monopolised and marketed. I will say a
patent-based system fails because it actually stifles innovation in the
biomedical sphere.

Broken, failed. Like the most people, I easily use all these subjective
words when talking about the current system. A pharmaceutical executive
will likely see what I see as failure as great success. And when I look at
the recent history of biomedical R&D, I do have to marvel at how successful
the current system has been. I have to acknowledge that the system we have
today, created by some visionary pharmaceutical company executives who
pushed for a monopoly-based profit based system enshrined in TRIPs, is
functioning exactly how it was always intended to function. It may even be
more successful than those executives ever dreamt. Their system has proven
to be incredibly resilient to attack, absorbing and incorporating the
tweaks and challenges thrown at it and carrying on business as usual. The
recent Trans-Pacific Partnership Agreement talks bring this reality into
stark relief.

I now realise I have been wrong to keep referring to the system as broken
or failed. Not only is the system neither, but by constantly reacting to
the story set up by pharmaceutical companies since the 1980s, I am dancing
the pharma foxtrot, following their lead. I unwittingly give credit to the
story that that tells us how medicines are a market commodity like DVDs or
cars; that we need patents to innovate new medicines or else companies have
no incentive to develop new drugs; that while patents create high prices,
ultimately this is to the benefit of patients because only companies can
take the risk to produce medicines, which they do for the good of society
and their shareholders without whom they could not do what they do. This is
the story that we as an access community constantly try to refute, reject
and correct. But like all good stories, whenever we come up with a good
argument, the story absorbs it, coopts our language and carries on

We need a counter story.  We need to stop saying No all the time.  We need
something to say Yes to - we need to stop dancing the pharma foxtrot and
start a citizen’s samba, a dance that quickens the pace and out-dances the
other.  In this way we become the leaders and the pharmaceutical industry
has to keep time with us, not the other way around. We need to yell a
resounding Yes to a shared ambition for a biomedical R&D approach that
ensures that all people can access the medicines they need not only to
survive but also to improve their quality of life. This ability (or right)
is rooted in the philosophy that health is a public good and that all
people have a right to that public good. Serving people with medical
treatment needs will be the driving force of that model and medicines will
be researched and developed according to the needs of those patients.   My
dream is of a public innovation network that works with patients,
researchers, developers and treatment providers to respond to needs
appropriately, effectively and in a timely way.  This network of
initiatives, whereby profit becomes relegated to a modest by-product of the
activity rather than a deliberate goal, is driven by human health and
welfare not profit.

There are initiatives out there trying to address the problem and which
have even begun to provide the elements of a new story. At UAEM, we
developed a mapping of those ‘alternative’ R&D initiatives.  Many of the 81
initiatives we included are direct responses to one or more ‘failings’ of
the system. They begin from the premise that the system is broken and that
they will fix a part of it. While undoubtedly going in the right direction,
what we have now is a landscape of fragmented initiatives that provide a
temporary or partial fix. Ideally, these initiatives would complement each
other but in reality the lack of coordination may force them to compete
with each other to attract financing and political support.

And so again we fall into the same old rhythm of perpetuating a story
created by the drive for corporate profit. This fragmented approach does
not give us something to say Yes to.  The initiatives have given us
essential elements of the story we need to create – principles like
de-linkage, openness, transparency, collaboration and partnership.   But we
have not yet fully adopted a compelling new narrative or frame around
public health goods, health outcomes and success for people.

We need a place to start. A practical step would be to provide a new frame
for all those alternative initiatives that we mapped at UAEM. Instead of
seeing them as responses to a failed system, we need to reframe them as
building blocks of a new system of biomedical R&D. By setting that new
frame, we can then analyse the existing or proposed initiatives under a new
light, extracting the elements that fit the new frame and rejecting those
that do not. We can look at how they connect (or not) or how they could
connect. This can give us the starting point for a blueprint of what a new
biomedical R&D network should look like, what it should contain and what it
should not. We can highlight the gaps and the challenges that still need to
be addressed.

To make this start, I believe we have to adopt five golden rules:

*- Think beyond neoliberal economics.* We need to look to a new governance
model that refutes the obsession with growth and seeks out the sustainable
ways of achieving happy healthy societies living within their limits

*- Turn away from the extractive mindset.* We need to start seeing
biomedical R&D as a closed integrative loop instead of linear approach with
a constant need for heavy inputs to compensate the massive extraction of
outputs not connected with the needs of patients.

*- Stop obsessing about how to finance R&D*. Staying in the ‘but how to
finance it?’ prevents us from thinking outside the sandbox. Instead of the
current money default, let’s start by what we want. And, quite honestly, I
do not believe there is a lack of money to make drugs for the majority of
the world.  Like food, I think it is a question of how we choose to
distribute the resources we have.

*- Recognise that we are at a tipping point*. It is no coincidence that
ethical approach to climate and business and global health are occurring
now.  It is not just because we see the damage we have and are causing in
all walks of life but also because youth want change.  As Singer points out
we are entering an age of ‘effective altruism’ where the members of the
generation coming of age in this millennium are more interested in having
an impact than in making money for its own sake. We need to tap into this
demand for change from the ground up and feed the demand emerging in rich
and poor countries alike. To gain political and social capital, we need to
inclusive participatory approach that makes sense in terms of equity and
justice, and which resonates with the public and allows them to appropriate
it as their own cause.

*- Think in terms of nodal networks and not systems.* Networks or nodal
concepts of collaboration and openness should replace traditionally
system-based concepts of closed-ness and hierarchy. Using this approach, we
can appreciate, harness and expand on the energy and thought put into the
alternative initiatives by providing a new interactive and innovative
landscape to anchor their existence.

To end, I have told you my big, beautiful dream that I know many of us
share. Sometimes, in trying to be “pragmatic” and “realistic”, we do not
allow ourselves to believe in the dream. We keep it as a utopia when in
fact we should be working to anchor it in today and tomorrow. I am
convinced we can build a totally new approach the goal of which is not to
eliminate what exists, but rather provide a new approach based on
principles of justice and equity that will become the way to address the
needs of the majority of the world. In time, the existing profit model will
wither as people worldwide see that the new approach is the one that
addresses their needs and values.  They will be the ones who force their
governments to work with a new attitude.  We will write a new story of
biomedical R&D. This is not just a fun idea – this is fundamental issue of
justice and development and our vision of a world that is within our reach.

*References, Inspiration and Ideas*

Naomi Klein “This Changes Everything: Capitalism v Climate” Simon and
Schuster, 2014

George Lakoff “Don't Think of an Elephant! How democrats and progressives
can win: know your values and frame the debate” Chelsea Green Publishing,
Sept 2014

Malcolm Gladwell “The Tipping Point: how little things can make a big
difference”  Little Brown and Company, 2002

Burris, Scott and Drahos, Peter and Shearing, Clifford “Nodal Governance.”
Australian Journal of Legal Philosophy, Vol. 30, 2005. Available at SSRN:

Peter Singer “After VEW: Ethical Business and the question of honesty”
Globe and Mail, Business Report, October 13, 2015.

Greenburg, Kiddell-Monroe, Basey (October 2015) A mapping of alternate R&D
initiatives (draft)

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