Genocide by Denial: How Profiteering from HIV/AIDS Killed Millions – an open access book from UgandaPosted by Eve Gray | 24 May, 2009
Fountain Publishers in Uganda has launched as its first open access book a powerful and moving indictment of the price in human lives that the global innovation system has extracted in sub-saharan Africa, written by the internationally respected AIDS specialist, Peter Mugyenyi. The book is Genocide by Denial: How profiteering from HIV/AIDS killed millions. This is the first demonstration project in the PALM Africa initiative and the response to the open acess book as well as its impact will be tracked and researched by the PALM team.
Fountain Publishers' motivation in pioneering the first pilot in the PALM programme is to get wider exposure for its books and test the impact of open access on print sales. Fountain publishes a number of leading African scholars as well as Mugyenyi, including Mahmood Mamdani, Ali Mazrui, Archie Mafeje and Sylvia Tamale. James Tumisiime, the publisher, hopes that placing an open access version of these books online will bring more readers to the Fountain publishing list, gaining more inter-African and international exposure and increasing sales of the print version of the books concerned.
Mugyenyi is certainly a fitting candidate for this initiative. His WHO bio reads as follows:
One of the world’s foremost specialists in the field of HIV/AIDS, Professor Mugyenyi is a pediatrician by training. He was key in founding Uganda’s HIV/AIDS Joint Clinical Research Centre and establishing partnerships with other institutions throughout the world. Although his reputation and expertise would allow him to find a position anywhere in the world, Professor Mugyenyi chose to remain in Kampala, where he feels his work has the most impact.
The timing is impeccable, as the release of the open access version of the book coincides exactly with a breakthrough at the World Health Organisation, which has finally reached agreement on a global strategy and plan of action on public health, innovation and intellectual property. The WHO initiative, after long negotiations driven by developing countries, aims to address exactly the problem that Mugyenyi addresses – the excessively and unaffordably high prices of the drugs needed to treat neglected diseases in developing countries, driven by the global patenting system. In addition, it addresses the lack of adequate research on neglected diseases, also spawned by the profit-driven Intellectual propoerty regime supported by the developed world.
Among the recommendations in the WHO plan of action is government intervention to ensure voluntary sharing or research, open access publication repositories and open databases and compound libraries of medical research results. Thus Fountain's engagement with open access publishing on a public health topic is right in line with – and ahead of - developing global policy.
Mugyenyi's book needs to be read by the South African bureaucrats who are trying to enforce widespread and rigid commercialization of public research. Mugyeni's conclusion to his book puts the issues succinctly:
Laws that deny or delay access to life-saving and emergency drugs should be urgently addressed on the humanitarian principle of lives above profits, but without hurting the businesses. Innovation in the crucial area of human survival should not be entirely dependent on money-making and big business, but should primarily aim at the alleviation of all human suffering and saving lives as a basic minimum.
This does not contradict fair trade. Business success and humanism are not incompatible It is just a big lie to suggest that humanity is too dim to find ways of rewarding innovation and discovery other than by holding the very weakest of our society at ransom. It is also untrue that the only way businesses can thrive is by cutthroat pursuit of profits under powerful and insensitive protective laws, irrespective of the misery caused and the trail of blood in their wake. Lessons learns from the AIDS disaster should help the world find a way of incorporating justice and human rights in business. It is glaringly clear that the ills of the present system need to be fixed.
He appears to be vindicated by the fact that the WHO is now aligning itself with this approach.
Mugyenyi writes with deep compassion and scathing anger of the price that has been paid as a result of patent-driven high prices for antiretrovirals; of the expedience and posturing that can accompany high-profile donations; and of the implicit racism and under-estimation of African medical skills that sometimes underlies global health policies and donor initiatives in Africa. He has an incisive intellect when it comes to debunking the double-speak that can underpin the rhetoric of the big pharma companies and he provides what was to me a startling insight into the realities of the investment as against profits of drugs like Nevirapine. Most of all through this is a moving account of the emotional price paid by doctors and families as they helplessly watch the suffering of unnecessary deaths. “It is painful to see a patient die due to lack of effective medicine or intervention.” he says, “simply because they are too poor to afford it."
Print copies of the book are available in the UK from the African Book Collective (ABC) and the book is available from Amazon in the UK and the USA. Now we need to get a system going for POD fulfilment in African countries, something the South African PALM project is addressing.