FORGING THE CHAIN

I
58
THE PATH OF
INSTITUTIONAL
CHANGE
“Whatever you do, or dream you can, begin it.
Boldness has genius and power and magic in it.”
Goethe
A “think tank” convened in Berlin in 2003 explored
these and other ideas with major stakeholders, and
the concepts were further developed during a second
meeting held in Berlin in 2005. Strategies focused
on: linking NTDs and human rights; the importance
of sustaining progress, rather than relaxing attention
when the diseases were almost eliminated; bridging
gaps between research and disease control; developing
more effective treatment tools and approaches;
creating frameworks for new partnerships; securing
access to drugs; and ensuring external financing.
Something had to be done in the 1990s. By then it was
clear that many tropical diseases had been so severely
neglected that tens of thousands of people were dying
from them every year. Lives that could have been
saved. Moreover, the trends were not looking good.
WHO had long focused on tropical diseases, but had
tackled them separately, seeking bilateral funding for
separate programmes and struggling against the technical
complexities in separate efforts. The neglected
diseases fell into an awkward category: they were too
“small” for major campaigns and were largely ignored
by funders – and often by the health systems of countries
in which they were endemic. Many of those
countries invested their limited resources into fighting
“bigger” diseases such as malaria and HIV/AIDS.
Still, the toll of death and disability was significant and
continued to rise. At the same time, bilateral funding
for separate efforts against the “smaller” diseases
began to decrease. When a major pharmaceutical firm
ceased production of the lone remaining medication
available for treating sleeping sickness, WHO, various
NGOs and several philanthropic foundations raised
the alarm. The pharmaceutical firm agreed to resume
production altruistically: the medicine would no longer
be for sale but for distribution only by WHO, and it
would be used to provide treatment free of charge.
An idea took hold: WHO would innovate a strategy to
package these diseases together rather than tackling
them separately. Considered as a group, the diseases
were not too small to capture attention.
These renewed efforts – and some encouraging
results from the revitalized campaign against sleeping
sickness – led the Director-General of WHO to
establish the Organization’s Department of Control
of Neglected Tropical Diseases in 2005. Significant
funding and cooperative commitments were obtained
from a broad range of partners, including foundations,
WHO Member States, pharmaceutical companies and
various health organizations. As efforts and advocacy
intensified, WHO formulated a “roadmap” to drive
the international community forward in tackling the
neglected diseases, with specific targets set for 2015
and 2020. The World Health Assembly (WHA) adopted
resolution WHA66.12 on NTDs in 2013, and countries
throughout the world pledged the necessary support
for the programme.