Access denied: two personal stories
While working in Rwanda, Ruth Evans - journalist and writer - met and interviewed two young women. She writes…
The 1994 genocide in Rwanda was deliberately planned and systematically executed, resulting in the brutal mass murder of over a million people. Rwandan women and young girls not only witnessed the torture and killing of their families, and destruction and looting of their homes and property. They were also subjected to extreme and brutal forms of sexual violence, raped, deliberately infected with HIV/AIDS and mutilated. Chantal is one of them. Her family were all killed in the genocide, and she was raped and infected with HIV. As the sole survivor, she now struggles to care for five orphaned children, as well as her own child, conceived as a result of the rape. Ten years on, she is sometimes too sick to work or plant her shamba, and then the children go hungry. She knows that treatment with antiretrovirals is available in Rwanda for around US$ 25 a month. But she says she cannot afford even the bus fare to the clinic, let alone the medicines. "Only God can help me," she says. "The genocide is still a daily reality for women like me, only ours is a slow death. My biggest worry is who will look after the children when I am dead."
Akimana's story is just as distressing. When she was ten years old, Akimana's Hutu parents were killed because they opposed the genocide in Rwanda. Although she herself was shot in the shoulder and left for dead, she survived. Today she looks after her four orphaned brothers and sisters. "Getting treatment is a big problem," she says. She still has medical complications from her wounds, including fainting attacks and heart problems. But her greatest worry is looking after the other children. "It's not easy to get money to take them to the clinic about 10 kilometres away. Malaria is the biggest problem. In the rainy season, one of them might fall sick twice a month. It isn't easy to get treatment and the medicines are too expensive for us to buy."
These stories portray not only the terrible circumstances some people have been forced to endure as a result of civil strife. They also underscore the continuing gap between the potential that essential medicines offer for improving and maintaining quality of life, and the reality that for millions of people who desperately need them, they remain far beyond reach.
(Editor's note: Chantal gave permission for her story to be used to publicize the plight of women who were raped during the genocide.)
Genocide survivors at Munrire Genocide Site in Rwanda
PHOTO: United Nations/DPI
Essential medicines and the right to health
WHO's Constitution states, "The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition." The human right to health is also recognized in many international and regional treaties.
The most comprehensive article on the right to health is found in the International Covenant on Economic, Social and Cultural Rights (ICESCR). Article 12.2 sets out a number of steps for ensuring progressive realization of this right, including provision of health facilities, goods and services.
Turning treaties into practice
By the end of 2002, 142 countries had signed the Covenant and 83 countries had signed regional human rights treaties. Over 100 countries have now incorporated the right to health in their constitution. Ratification of an international human rights treaty means that a state becomes a state party to that treaty. As such, it is obliged to meet certain obligations with respect to its population. But are these obligations enforceable in practice?
In 2002, WHO started a study to identify, analyse and summarize court cases in developing countries that individuals or groups had initiated against a government or governmental institution, to secure access to essential medicines, fully or partly on the basis of human rights treaties signed and ratified by their government. Evidently, the study focused on those who had won their case and how their example could be used to empower other individuals and groups to launch similarly successful cases and claim the benefits due to them.
A total of 20 cases from Argentina, Bolivia, Colombia, Costa Rica, El Salvador, South Africa and Venezuela were identified. Of these, seven (35%) cases had been strongly supported by nongovernmental organizations. Eleven (55%) cases contested a social security scheme. In a further six (30%) cases, the defendant was the ministry of health.
The full study has not yet been published, but the boxed examples illustrate the potential for increasing access to essential medicines through legal action based on the state's obligation to provide access to essential medicines in part fulfilment of the right to health.
Hans Hogerzeil - email@example.com
Claiming the right to access to medicines
In El Salvador, Odir Miranda and 25 others living with HIV/AIDS filed a complaint in January 2000, before the Inter-American Commission on Human Rights, alleging the state's failure to provide them with life-saving antiretroviral (ARV) therapy. The Commission solicited the Salvadoran State to comply with its regional obligations and provide the treatment. The Supreme Court in El Salvador supported the claim and in 2001 issued a ruling ordering the Social Security Institute to provide ARV therapy. The ruling was based on the right to life and health as entrenched in the Constitution and international treaties ratified by El Salvador.
In 2001, in South Africa, individuals and health advocacy nongovernmental organizations jointly challenged the decision of the South African Ministry of Health to restrict access to nevirapine, a medicine used to prevent mother-to-child transmission of HIV. The central argument was that restriction of nevirapine to test sites only violated the right to health, to life and to equality. The case was eventually brought before the Constitutional Court. In 2002, it ruled that the restriction on nevirapine was unconstitutional and ordered the government "without delay" to ensure its availability throughout the country.
Ensuring medicines supplies at all levels at all times
The success of new strategies to fight against high-burden diseases depends heavily on effective medicines supply systems. Supply problems must not be the bottleneck that prevents medicines reaching those who need them. WHO is exploring options for using the experience of nongovernmental organizations (NGOs) to create supply systems based on an efficient public- private mix. One example of WHO's work in this area is an innovative study on medicines supply activities by faith-based organizations.
Throughout 2003, in collaboration with the Ecumenical Pharmaceutical Network, and with funding from the Swedish International Development Agency, WHO surveyed the medicines supply practices of 16 faith-based NGOs in 11 sub-Saharan African countries. One particularly effective feature has been data collection through paired country assessments. Staff from NGOs in one country have systematically researched supply systems in their partner country and later hosted a return visit.
Adding value to supply systems
Commenting on the value of this twinning arrangement, Mrs Marsha Macatta-Yambi, pharmacist at the Christian Social Services Commission, Dar Es Salaam, Tanzania, said that, "Receiving the visit from the Zambian group was a highlight, and it reinforced just one of the project's positive outcomes - it has made my colleagues in other departments realize the importance of my pharmacy's work."
The country reviews had been completed by December 2003. Preliminary findings indicate that faith-based supply organizations often fill gaps left by government supply systems. One issue that has been highlighted is the negative effect of unexpected drug donations on the sustainability of NGO supply systems. In some cases, donations distributed free of charge, had decreased the sales of revolving drug fund mechanisms, leading to stock wastage and financial loss.1
1 This finding underlines the importance of continued adherence to the Interagency Guidelines for Drug Donations, and a companion volume, Guidelines for Price Discounts of Single-source Pharmaceuticals, the latter published by WHO in 2003. They can be obtained by emailing firstname.lastname@example.org.
Data analysis of study results is continuing, and WHO will disseminate the information gathered and its recommendations.
Further commenting on her involvement in the study, Mrs Macatta-Yambi said, "My initial feeling was one of trepidation at the possible difficulties and extra work, but it has been worth all the effort - being part of the project has definitely added value to my work. The study questionnaires are so well thought out and so comprehensive that the project has given us greater insight into what we do. Also, transparency is so important to us and this project has been one way of ensuring our transparency."
Marthe Everard - email@example.com; Sophie Logez - firstname.lastname@example.org
Collaborators in medicines supply (from left to right): Marlon Banda (lead investigator, Zambia); Stella Feka (Organisation catholique pour la Santé au Cameroon); Marsha Maccata-Yambi (Christian Social Services Commission, Tanzania); Hans Peter Bollinger (Ecumenical Pharmaceutical Network)
PHOTO: WHO/Sophie Logez
WHO and Médecins Sans Frontières: productive differences
Civil society has had a major role in pushing the issue of access to antiretrovirals (ARVs) higher up the global health agenda. Nongovernmental organizations (NGOs) such as Oxfam, Médecins Sans Frontières (MSF) and the Treatment Action Campaign in South Africa, as well as the media, have all actively and repeatedly demanded that HIV/AIDS medicines, including ARVs, be made much more widely available and affordable. Concurrently, WHO is looked to for guidance on how to ensure good-quality and effective medicines.
WHO continues to develop close collaborative relationships with many NGOs working on HIV/AIDS issues, including MSF. "We don't necessarily always agree," says Daniel Berman, codirector of MSF's Access Campaign, "but the working relationships we have developed with WHO have been very productive. We know that some of WHO's most important work is carried out under considerable pressure. One example is prequalification of medicines. It's crucial for the countries in which we work, and has revolutionized the purchase and supply of low-cost medicines."
In October 2003, WHO and MSF jointly published Surmounting Challenges: Procurement of Antiretroviral Medicines in Low and Middle-Income Countries2. This survey of the availability and use of ARVs in 10 countries found substantial variation in access to ARVs. But it distils the individual procurement experiences of the countries concerned and makes a number of recommendations on how to optimize ARV availability.
Drug price targets: could try harder
Much remains to be done, however, to get ARVs to all who need them. Although prices of ARVs are now much lower than they have ever been, MSF says they should come down even further still. "WHO's drug price targets lack ambition and do not reflect prices that are currently available," claims MSF's President, Morten Rostrup, referring to an announcement by an Indian drug company that is now offering its triple therapy for US$ 140 per patient per year. "Today, drug prices have fallen another 50%. WHO should encourage this trend so that universal access to AIDS treatments becomes a reality. The full effects of the implementation of TRIPS 3 will not become visible until after 2005, when generic competition will become more difficult. WHO will then need to play an even more active role in ensuring that affordable essential medicines become available."
3 World Trade Organization Agreement on Trade-Related Aspects of Intellectual Property Rights.
Documenting availability and use of antiretrovirals (ARVs) in 10 countries, this new publication gives recommendations on how to optimize ARV availability