Team Of Experts Form WHO Working Group On IP And Neglected Diseases

By Kaitlin Mara
The World Health Organization has released a long-awaited list of high-level experts tasked with finding innovative funding mechanisms for needed medical research on neglected diseases. The list largely contains governmental and intergovernmental representatives, and first reactions to it have been generally positive.

The creation of this “results-oriented and time-limited” expert group was a key outcome of the WHO’s global strategy and plan of action on public health, innovation and intellectual property, approved at World Health Assembly in May. The 24-member body will look at the “current financing and coordination of research and development, as well as proposals for new and innovative sources of funding to stimulate research and development” in diseases which disproportionately effect developing countries.

The list is available from the WHO website here.

The group includes representatives from developed and developing nation governments, international organisations, think tanks and academia. The group is expected to report to the WHO Executive Board meeting in January 2009.

Of the 24 experts, 11 hail from developed countries (six from Europe) and thirteen from developing countries, though a number of them come from international organisations where their nationality is secondary. The list appears to be rather politically neutral, and no expert hails directly from an advocacy background, either for industry or civil society.

The areas of expertise are wide-ranging, and many of the experts’ careers have been in the area of public health. Several served in their national ministries and institutes of health, others have focussed on finance, sustainable development, medical sciences or economic development – several are from the multilateral development banks.

The list avoids people with an obvious interest in a particular outcome, noted Charles Clift of the UK Department for International Development (DFID), who headed the Commission on Intellectual Property Rights, Innovation and Public Health (CIPIH), which gave rise to the Intergovernmental Working Group on Public Health, Innovation, and Intellectual Property (IGWG) that led to the global strategy.

Early reactions from across the spectrum were positive. Clift said it was “not a bad list,” and wondered if the WHO secretariat would add to its staff someone with expertise in financing mechanisms, as that is not its traditional area of expertise.

A developed country official said it is “a pretty good group” and “I look forward to following their work.”

James Love, director of Knowledge Ecology International, posted in the group’s blog that KEI was “generally impressed” with people on the list, which they said includes some open to new ideas.

And Richard Kjeldgaard, associate vice president for international intellectual property at the Pharmaceutical Research and Manufacturers of America, said the group looks “forward to working with the expert group as they examine proposals for new and innovative funding sources” aimed at addressing developing country needs.

This openness is key, as many civil society group stakeholders are interested in not only ways of procuring new funding, but also in ways of enhancing the structure through which innovation is incentivised. In particular, the use of prizes has been promoted by non-governmental organisations Médecins Sans Frontières and KEI, in order to separate the often high cost of drug development from the eventual cost of the drug.

Sisule Musungu, president of think tank IQsensato, cautioned that high credentials alone “will not resolve the question, since the problem requires interdisciplinary analysis… and thinking ‘outside the box.’” The group’s “willingness to learn” and to “listen to a variety of ideas” will be critical, he added.

The chair of the group, if named, has not been made public, though Philippe Douste-Blazy, the special adviser to the UN secretary-general on innovative financing for development appears to be singled out on the list.

At least two group members have prior experience in some form of health financing: Mary Moran of Australia, who contributed to the OECD Workshop in Innovative Finance in Health and is now director of the Health Policy Division of the non-profit George Institute for International Health in Sydney; and Sue Szabo of Canada is the chief of development policy at the Department of Finance and is “an expert in international health and innovative finance” according to her biography.

Moran also contributed to the CIPIH. None of the experts appears to have a specifically IP-oriented background, though two have experience in general innovation policy: Pedro Conceiçâo of Portugal used to teach science, technology and innovation policy at the University of Lisbon; and Sibusiso Sibisi of South Africa formerly chaired the National Advisory Council on Innovation and served as deputy vice-chancellor for research and innovation at the University of Capetown.

A source noted that there is no one from the Gates Foundation, which has been very active in funding research on neglected diseases.

The global strategy named several areas to be implemented “urgently,” stating recognition of the “growing burden of diseases and conditions that disproportionately affect developing countries, and particularly women and children” and of the impact of poverty in limiting access to medicines and medical devices.

These urgent implementation areas included the creation of the working group on financing mechanisms, which can now begin work seven months after the mandate was given.

Another urgent area was to finalise the global strategy plan of action which still contains bracketed text, or areas of disagreement, to be “urgently” resolved so a final draft can be submitted to the Executive Board in January. The action plan takes the global strategy’s elements and places them in a matrix detailing: specific actions needed to implement them; stakeholders responsible for taking those actions; and a timeframe in which they should take them.

Also considered urgent was the undertaking of a gap analysis detailing where research on neglected diseases is lacking.

There had been much speculation among member states and interested stakeholders in the last several months about these action areas, as well as over a “quick start programme” that says all elements of the global strategy and plan of action that are the WHO’s responsibility should be done urgently, though the global strategy does not explain what specific actions this entails nor what progress indicators might be.

Kaitlin Mara may be reached at kmara@ip-watch.ch.