Do copyrights and patents limit access to HIV/AIDS knowledge and treatment in Africa?

This article is originally written in French for GenderIT, and has been translated into English.

The UNAIDS 2008 report confirms that Sub-Saharan Africa continues to be the region most seriously affected by AIDS in the world, with two-thirds (67%)[1] of all persons living with HIV and three-quarters (75%) of AIDS-related deaths in 2007. There were approximately 1.9 million people newly infected with HIV in sub-Saharan Africa that year.

As part of the response to this pandemic, access to information and knowledge on HIV/AIDS is vital, as disease prevention depends heavily on information. It is certain that “because there is no vaccine or cure for HIV or AIDS, information is crucial for preventing the spread of the virus. Through widespread information about HIV/AIDS, the people of Sub-Saharan Africa can gain the knowledge needed to change their behavioural response to the AIDS epidemic.”[2]

However, the world of knowledge is regulated by intellectual property and copyright issues, and HIV/AIDS-related knowledge and information are not exempted. In a world where there is a price to pay for access to knowledge, and where those with the information have the power, to what extent do patents and copyrights limit access to information and HIV/AIDS treatment for African populations, particularly the women and youths who are the most affected? Has online publication facilitated access to information on HIV/AIDS? Is diverse and scientific information on HIV/AIDS accessible to women who are infected with and affected by HIV/AIDS and to AIDS organisations and other African researchers?

It is an indisputable fact that, today, information on HIV/AIDS is available on the internet in several languages, although Western languages dominate. Many portals and websites offer regular information on the disease, living positively, research updates, international guidelines, useful guides and activities carried out. These websites are not necessarily all African initiatives, but cover important issues for the continent. For example, the webites of UN AIDS - one of the main HIV information websites, Survivreausida.net, African Council of AIDS Service Organizations, UNESCO HIV & AIDS Education Clearing House, Canadian AIDS Treatment Information Exchange and Sida Info Service.

There are very few African creators of HIV/AIDS related content, and even fewer by women infected with or affected by HIV/AIDS. However, the trend is starting to reverse, with increasing proliferation of online networks and communities such as Réseau sida Afrique and Réseau des médias africains contre le SIDA, la Tuberculose et le Paludisme.

It is also important to assess whether women are users of this online information, as it is often not accessible in the languages that they speak. There has been international initiatives that, to their credit, are improving access to information and knowledge on HIV/AIDS and health. The blog, “HIV this week” maintained by UNAIDS presents a selection of excerpts from important publications on HIV and tuberculosis presented in scientific journals. Some journals have free access and are available to readers in all countries, for example, American Medical Association journals, and Public Library of Science journals. Other journals only give free access to complete articles after a certain period of time.

In the same momentum, the HINARI (Access to Research) Initiative was set up by the World Health Organisation (WHO) with major publishers. It aims at providing free or low-cost access for public institutions and non-profit organisations within developing countries to the major periodicals which cover the domains of biological medicine and social science.
To date, there are almost 5,500 periodicals available to health institutions in 108 countries, which provide access to information on health to public health personnel, researchers and legislators, thus contributing towards an improved health situation worldwide. HINARI also allows reproduction of articles for use as lecture material for academic members and the teaching body.

Although the spin-offs of scientific research on HIV/AIDS and health in general are numerous, such knowledge is rarely accessible to HIV/AIDS activists and those infected with or affected by HIV/AIDS in Africa. Work and research results continue to be subjected to data protection, and online publication has not reduced these obstacles, “the international copyright trend has been to restrict the public domain, limit access to knowledge and increase protection, particularly within the electronic environment. International treaties, European directives and national laws have eroded the rights of information users.” [3] Procedures and provisions made by Governments with regard to licenses, digital copyright management and copyright laws are becoming increasingly restrictive, and thus limit access to information.

There is not only the challenge of accessing useful and essential information on HIV/AIDS on the internet, but reliability, accuracy, topicality, relevance or comprehensiveness of accessible information contained on internet sites is generally also not guaranteed. As a result, there are sometimes problems, not only in terms of copyright, but also with regard to the reliability of the HIV/AIDS information sources, to such an extent that some creators of content expressly deny responsibility for errors or omissions.

In addition, on some websites containing HIV/AIDS resources, the terms of use mention that all published content including articles, text, photographs, images, illustrations, audio and video clips are protected by the laws prevailing in the country and other international laws governing copyright and intellectual property, and the copyrights belong to the content providers. Personal and not-for-profit use of resources on HIV/AIDS is strongly recommended for some sites, while others say nothing.

According to the French Association of Free Software Users, “giving access to a creation, especially on the internet, and irrespective of whether it is a piece of software, must be a voluntary and explicit action. Such an action is expressed by the addition of a licence, which is a type of contract offered to those acquiring the creation (free of charge or payable) indicating the rights given to them, and any obligations that may be imposed on them in exchange.”

For some, publishing on online communities or websites is equivalent to renunciation of copyright. Others use different kinds of licences. For example, the Free Document Dissemination Licence allows reading, reproduction, distribution, translation and quotation of documents by any means and on any media, provided certain conditions are met that relate to the amendment of documents and their re-distribution to third parties. There are also the Creative Commons initiatives which offer an organised structure of licences. Generally, with regard to “free content” types of licenses, there are moral prerogatives which evoke respect of the authorship and integrity of the work. When using such content, the name of the author must be mentioned and no modification to the original work can be made unless it is mentioned with the agreement of the author, or unless the author decides to give up these rights. The author also has proprietary prerogatives relating to reproduction and representation rights.

For the sake of copyright, research results are generally published in international journals which AIDS organisations, activists and organisations of women infected with and affected by HIV/AIDS have difficulty accessing owing to the high cost. “Commercialisation, restrictive copyright laws and technical protection measures also block access to other sources of African information. This is the case, for example, with AIDS resources that tend to be blocked by costly periodicals and digital archives which health personnel in rural areas have no opportunity to access.” [4] Information has become a commodity, and is not always freely disseminated.

Achievement of the right to health for millions of African women largely depends on access to adequate health infrastructure, essential information on diseases, and access to drugs, notably ARVs for women infected with HIV. Freedom of information is guaranteed in Article 19 of the Universal Declaration of Human Rights of 1948 and is also incorporated in the International Covenant on Civil and Political Rights (ICCPR), of which almost all African countries are signatories. Technical measures to protect creations must take these aspects into account since "copyright restrictions therefore have a major impact on access to information, particularly in historically-disadvantaged and rural communities where access to information is particularly difficult and library resources are limited.” [5]

The Governments of most African countries have, to varying degrees, committed to ensuring the right to health for their people, in national constitutions and by signing international conventions. This forces them to regard public health issues as priorities. International NGOs and African civil society organisations are rapidly increasing their advocacy efforts with regard to access to treatment for persons living with HIV, in the main the women and children of the continent. According to Medecins Sans Frontieres, these organisations have carried out activities appealing to “pharmaceutical companies to remove obstacles related to patents, disclose their molecular compounds and their procedures in order to facilitate the development of treatments for neglected diseases, and make their libraries of compounds available to researchers."

The fight for access to treatment for the 22 million people living with HIV in Africa has proven to be an arduous one, and current information on this disease is demonstrative of this fact. The UNAIDS 2008 report acknowledges that “substantially greater progress will be required to move towards universal access to HIV treatment and care. The number of new HIV infections continues to outstrip the increase each year in the number of people on antiretroviral drugs by 2.5 to 1…” [6]

In order for research results to benefit the women and girls of Africa, access must be affordable. While new drugs are patented according to intellectual property agreements, signed by countries within the framework of the World Trade Organisation, access to retrovirals for all continues to be conditioned by the issue of cost. These costs “are likely to increase over time, as patients on standard fixed-dose combinations move to more costly second- and third-line drugs.” [7]

As emphasised in the United Nations Millennium Declaration, action must be taken to facilitate access to treatment. To fight HIV/AIDS, malaria and other diseases, and to ensure a sustainable environment, a global partnership needs to be established for development, as noted by Vecam, "in cooperation with the pharmaceutical industry, making essential drugs available and affordable in developing countries." Initiatives such as UNITAID have satisfied this need to facilitate the purchase of drugs and reduce the price of quality drugs to treat HIV/AIDS, malaria and tuberculosis in developing countries.

In summary, it is recognised that access to information and knowledge is essential in the response to HIV/AIDS. African countries acknowledge the right to health through their national constitutions and international conventions, and should continue the efforts they have started in HIV prevention and the provision of care and treatment to persons living with HIV/AIDS, on a continent where the epidemic is affecting an increasing number of women. Stakeholders in the fight against AIDS need strategic health information in order to orient and improve their interventions. This will only become a reality if the decisions taken by countries and the World Intellectual Property Organisation (WIPO) and the World Trade Organisation (WTO) take these issues into account with regard to protective measures for data, creations and inventions.