[Ip-health] PLOS blog: Stuck in a time warp: WHO-brokered global R&D action plan shelved

Katy Athersuch katy.athersuch at gmail.com
Fri Dec 7 04:52:45 PST 2012


Julien Potet and Katy Athersuch from Médecins Sans Frontières’ Access
Campaign discuss a backward step for medical research & development.

Ten years backwards. This was the journey through time that
representatives from governments around the world took last week when
they gathered at the World Health Organization (WHO) to discuss the
recommendations of a 2012 WHO expert group report on how to address
the medical R&D system’s failures in meeting the needs of people in
developing countries. But instead of tapping into the blueprint for
action proposed by this group, the meeting’s delegates decided to
simply continue monitoring the situation, by creating a global R&D
“observatory”—a deeply disappointing outcome that will not help
re-shape priorities, increase funding or catalyze development of
urgently needed new medical tools; at best it will only underscore
further how badly these actions are needed. Practical discussions of
new mechanisms to coordinate R&D efforts, secure sustainable financing
for R&D and establish a binding global R&D convention were postponed
until 2016. So, after more than ten years of inter-governmental
efforts to produce concrete proposals, these proposals will be shelved
for almost four more years while countries hide behind excuses. A
feeling of déjà vu…

For Médecins Sans Frontières/ Doctors without Borders (MSF) and others
providing care in resource-poor settings, and for the patients with
neglected diseases we see every day, this inaction comes as a serious
setback. Many of the available tools for diagnosing and treating
diseases caused by kinetoplastids (sleeping sickness, leishmaniasis,
Chagas disease) have major limitations. While the not-for-profit
“Drugs for Neglected Diseases initiative (DNDi),” which MSF helped
create ten years ago, has improved treatment options through new
combinations and formulations of existing drugs, there is still a
desperate need for better tools to accurately diagnose and effectively
treat more patients. Disease management often still relies on drugs
with limited efficacy (e.g., benznidazole for chronic Chagas disease),
lengthy series of painful injections (e.g., antimonials for African
visceral leishmaniasis), or microscopy to examine samples that can
only be obtained by invasive procedures (e.g., cerebrospinal fluid or
bone marrow aspirates used in tests-for-cure for sleeping sickness and
visceral leishmaniasis). MSF’s 25-year-long experience, recounted in
our recent report “Fighting Neglect,” proves that these tools can save
lives. But scaling up case-finding and treatment is challenging in
poor, rural settings with weak health infrastructures, where most
patients with these diseases live.

Whilst most multinational pharmaceutical companies now make their
compound libraries openly available for neglected disease drug
discovery research, this is only a first step; the subsequent
pre-clinical studies and clinical trials are enormously expensive. Yet
R&D funding for sleeping sickness, leishmaniases and Chagas disease is
not only very limited but is actually decreasing: according to the
latest edition of the G-Finder survey, only US$ 131 million was spent
in 2011 for R&D on kinetoplastids, down US$ 16 million compared with
2010. Philanthropic and public resources for this research have been
declining since 2009, and private investment remains minimal: the
pharma industry invested only US$ 12 million for R&D on kinetoplastids
in 2011, although multinational pharmaceutical companies can pay over
US$ 10 billion for a single promising compound—as seen earlier this
year when Gilead Sciences bought a small company named Pharmasset in
order to acquire its promising hepatitis C drug, a possible
blockbuster in rich markets.

This contrast is a good illustration of how the current model for
financing R&D—i.e., the promise of high prices for new products—fails
completely for “commercially unattractive” diseases such as
kinetoplastids. Unless this link between R&D funding and prices of end
products is severed, the needs of populations in resource-limited
countries cannot be fully addressed.

In addition to more (and more secure) funding, a shift in priorities
is also needed to address the innovation deficit that has persisted
for too long. However, since most non-governmental organizations
working on neglected tropical diseases target diseases that can be
effectively controlled by mass administration of existing drugs
(lymphatic filariasis, onchocerciasis, schistosomiasis, trachoma,
etc.), they prioritize the rollout of available medicines, not the
development of new tools. The second meeting of a coalition called
“Uniting to Combat NTDs,” held in Washington, DC last month, barely
mentioned the need for better vaccines, diagnostics or drugs for these

But there are hopeful developments, among them that groups of patients
with neglected conditions are sprouting up and speaking out. The need
for better treatments tops the advocacy agenda of many groups of
people living with Chagas disease. Their pressure will be critical for
engaging governments and mobilizing the public leadership needed to
support the research for cures that millions of neglected patients

* Next week MSF, DNDi and Mount Sinai Global Health will hold a
conference: “Lives in the Balance: Delivering Medical Innovations for
Neglected Patients and Populations”

(December 13-14, 2012, New York City). The event will be livestreamed

Register here: http://livesinthebalancewebcast.eventbrite.com/#.

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