Research has consistently shown that gender inequalities and gender stereotypes restrict people’s access to health services. The same is true of treatment for HIV and related problems. Testimonies from women gathered by the International Community of Women Living with HIV/AIDS (ICW) shows the many ways in which this continues to take place, even as access to treatment expands.
HIV-related stigma and discrimination and gender inequalities are rife and when, for example, a woman has to ask relatives for permission to access services her safety and confidentiality are jeopardised. Violence and sexual coercion in the first place put women at risk from HIV infection. An HIV positive diagnosis can lead to increased levels of abuse, violence and abandonment and also lead to a further lack of self-confidence all of which undermine women’s ability to look after their health and assert their rights. When services are centrally located in major urban areas or when they charge fees for service, women are even less likely to access them. In fact even when ART is free women have found that costs associated with travel and treatment for related health problems puts the chance of leading a healthy life with HIV out of their reach.
A further concern arises when women access ARVs and their families do not. This may happen either due to a lack of ART provision for families or a reluctance on the part of family members to be tested. This puts the women who are being treated under severe pressure, through coercion or guilt, to share their treatment. "Most of us as women living with HIV and who are using ARVs we face a common problem that our husbands or partners tend to force us to give them our ARVs dose while he has not tested for HIV and doesn’t know his CD4 counts. They do not want to go for testing while they show all HIV symptoms. Even if you refuse he will find where you keep your medicine and steal them." (ICW members, Tanzania, 2005). Further, if family members are not accessing treatment then the burden to care for them as their health worsens generally falls on women.
Gender and HIV-related stigma and discrimination are also reflected in the health services. Our members have reported that health care workers:
• are often indiscreet and disrespectful;
• put conditionalties on treatment access, for example, making women go on contraceptives;
• fail to understand the context within which women have to put into action advice and treatments given, for example, advice against breast-feeding maybe ignored because of the associated stigma;
• lack specialist knowledge and services about treatment issues for women; and
• do not provide suitable monitoring and follow-up care of treatment and side-effects.
These latter two conditions are worsened in resource poor settings. Women report that they feel better able to deal with a positive diagnosis when health care workers are respectful of women and their rights, refer them to sources of care and support and understand the specific problems they face in terms health; and how they can act on the advice and treatment given them.
"We have been having some changes and interruptions in our treatment regimes because many times when we go for ARVs clinic we are being asked for some money so we tend to miss the dose even for a week or month till we get some money to pay for that service. Another regime is lack of enough food especially to us women who are under treatment. The consequences were; not finishing my dose which caused infections, staying without a dose till the clinic day and lie to the service provider that I have finished my dose, fighting with my husband or even chasing me out of the house when I refuse giving him my dose."
(ICW members, Tanzania, 2005)
Too often information is not tailored to cover the range of concerns that HIV positive have regarding care, treatment and support. Information given may be pushing a government or company line, be written in English and not local languages or may use medical language and dense text. The information may only be available in health centres and not distributed to places where women can access it during their daily routines. It may only be available in written form causing problems for women that are not literacte. The scarcity of relevant information is made worse by the lack of research on the gender-related impact of treatment for AIDS, or on related issues like its interaction with social and clinical factors such as hormonal contraceptives and violence in the family.
That is why ICW calls for knowledge and information tailored to the specific needs of women, delivered in a way that understands that women may not chance upon it on a table in a waiting room at the hospital. Support groups are already doing a wonderful job in this regard. We also call for women-specific clinical and social research that does not just treat participants as research subjects from which information can be extracted, but empowers them to participate in research in ways that enable them to gain skills and to use the information to advocate for change in their communities and countries.
Finally, there are a growing number of HIV positive women who are treatment activists. We feel frustrated when we constantly hear policy-makers tell us that we, as women treatment activists, we do not have the skills to engage with them. We would rather ask whether those in policy positions have the skills to engage with us in a way that is respectful and meaningful. With the challenges we face in reaching universal access, surely it is time that we all challenged our notions of where true expertise lies?
The International Community of Women Living with HIV/AIDS (ICW), set up in 1992, is an international network with over 5000 HIV positive women members worldwide. This article is based on their testimonies. “ACTS” refers to HIV positive women's ability to gain consistent access to all available care, treatment and support services.
Please send feedback or queries on the issues raised in this briefing to ICW http://www.icw.org/tiki-view_articles.php or to the EQUINET secretariat at TARSC, email firstname.lastname@example.org . EQUINET work on access to treatment is available at the EQUINET website at www.equinetafrica.org
What can Africans expect from the World Health Assembly (WHA) on 14 May 2007? Judging from past experience, the Assembly will be a forum where African countries will find issues critical to public health being raised, but not resolved without a struggle.
Kenya, supported by other African countries, proposed in a resolution on Malaria that, countries’ provide legislation to use “to the full” the flexibilities allowed under World Trade Organisation (WTO) agreements to increase access to anti-malarial medicines, diagnostics and technologies for prevention. The US has strongly opposed this. The WHO Executive Board therefore decided in January 2007 to send the draft resolution to the WHA with both the alternate US and Kenya proposals in bracketed text, indicating a lack of consensus. Inexplicably, the draft resolution posted on the WHO website did not reflect the Kenyan proposal and it took many days before it reflected the decision of the Board. The Kenya proposal needs to be supported to protect the legitimate legal rights that countries have under WTO.
Despite the negative US position, at the 2006 WHA many countries recognised that the current intellectual property rights system does not adequately provide for research and innovation on treatments for diseases that disproportionately affect developing countries. To address this, an Inter-Governmental Working Group on Public Health, Innovation and Intellectual Property was established to prepare a global strategy and plan of action. This Working Group will table a report at the WHA.
A resolution will also be tabled on the rational use of medicines, in light of a finding of irrational drug use in over 50% of medicines in developing countries, with weak application of essential medicines, particularly in the private sector. African countries could potentially treat double the number of people within the same budget if this were addressed. The issue of rational use of medicines has been discussed at the WHA since 1985, and countries have urged greater leadership, evidence based advocacy and support from WHO to advance implementation of rational drug use.
While these issues are on the WHA agenda, there is concern about what is happening in practice on intellectual property rights and health. In research on the small pox vaccine, WHO’s relatively open approach to ownership of the research outcomes has enabled private companies to derive exclusive patent rights from such research, such as the US patents have been registered on treatments by the University of California in April 2004 and April 2006. Such patenting could hamper access to vaccines for many countries in the future.
While small pox was eradicated in 1977, many countries still hold unofficial stockpiles of the small pox virus, with only the US and Russia holding official stockpiles. Backed by recommendations of the Committee on Orthopoxvirus Infections, in 1996 African countries pushed strongly for the destruction of the remaining stocks of the virus, given that the risk posed by deliberate or accidental release outweighed any benefits from retention. In a counter initiative, several developed countries including the US and Canada, drawing on recommendations from a new and differently constituted Advisory Committee on Variola Virus Research, are seeking to block the destruction dates so as to retain the right to seek approval for "scientifically interesting" research, including genetic modification of small pox.
WHO is now applying the same open approach to the Avian Flu virus, i.e. sharing specimens without ensuring provider and other countries have adequate access to treatments and vaccines. Countries like Indonesia, who share viruses, have found that they either cannot afford or cannot secure access to the vaccines because of limited production capacity, leaving their citizens vulnerable to infection. The WHO Guidelines (March 2005, listed but not available on the website) state that WHO Collaborating or Reference laboratories will neither share viruses or specimens, nor publish research results without permission from the originating country. Yet the sharing of specimens has not followed these guidelines, allowing private appropriation of the research outcomes.
Indonesia stopped sharing its viruses with WHO in 2007 even though sharing facilitates research into treatments and vaccines. Indonesia took action, not for commercial interest, but because it could not secure adequate access to vaccines for its people, who were offered vaccines at a prohibitively expensive US$20 per dose. Indonesia did say it was willing to share the viruses on more equitable terms, but WHO has thus far not been able to create equitable conditions for either virus sharing or access to Avian Flu treatments for countries in need (in Africa, Nigeria, Djibouti and Egypt have reportedly experienced Avian Flu). These cost barriers to access vaccines or treatment carry massive risk for the countries concerned: according to the US Centre for Disease Control (http://www.cdc.gov/flu/avian/gen-info/facts.htm) the Avian Flu mortality rate can reach 90 to 100% in 48 hours. In 2005, Indonesia experienced this problem when Roche refused to supply Tamiflu because of advance orders from other countries intent on stockpiling, even while Asian countries were experiencing an outbreak. Roche has sought to remain the sole producer of Tamiflu, despite donating some medicine to WHO.
Access to vaccines by developing countries may be further compromised by the limited global vaccine production capacity. Vaccine producers have taken advance purchase orders for vaccines. The resolution on Avian Flu to be considered by the WHA provides an opportunity for countries in Africa and elsewhere to ensure that access to vaccines is not a privilege primarily for wealthy countries, and that WHO facilitates wide access in response to need.
These upcoming issues at the WHA signal both the continued importance of international collaboration on health issues, as signified in the WHO constitution, as well as the need for constant pressure for and vigilance over its practice.
This editorial reflects the author's individual views. Please send feedback or queries on the issues raised in this briefing to the EQUINET secretariat at email@example.com.
Celia Almeida, Paula Braveman, Marthe R Gold, Celia L Szwarcwald, Jose Mendes Ribeiro, Americo Miglionico, John S Millar, Silvia Porto, Nilson do Rosario Costa, Vincente Ortun Rubio, Malcolm Segall, Barbara Starfield, Claudia Travessos, Alicia Uga, Joaquim Valente, Francisco Viacava.
This article will be published in the May 26 issue of The Lancet.
The authors of the WHO's World Health Report 20001 have placed on the WHO agenda a commitment to the laudable goals of assessing health systems, monitoring inequalities in health, and achieving equity in health-care financing. Their proposition that health services should be responsive to people's expectations is a welcome one. While these commitments should be sustained, we believe that the approaches taken toward these ends in the World Health Report are seriously flawed. We aim to suggest changes to the approach in the World Health Report to ensure that measurement strategies supporting public health policy throughout the world are scientifically sound, socially responsible, and practical.
Both the conceptual basis and methodological approaches to the World Health Report composite index of health system goal attainment and its individual components, and the indices of health system performance, have major problems. Data needed to calculate four of the five component measures for overall goal attainment were absent for 70-89% of countries, but this was not acknowledged in the report. Because all the measures are new, and imputed values for the 70-89% of countries without data were based on new methods involving multiple non-standard assumptions, readers deserve to know the underlying assumptions, methods, and key limitations, which were not adequately acknowledged. The measures of health inequalities and fair financing do not seem conceptually sound or useful to guide policy; of particular concern are some ethical aspects of the methodology for both these measures, whose implications for social policy are cause for concern. The use of the composite indices for guiding policy is not evident, mainly because of the opacity of the component measures.
In response to criticisms of the report from member states, the WHO Executive Board on Jan 19, 2001, recognised the need to establish a technical consultation process that would obtain input from member states and a small advisory group for the cross-country assessments of health systems (www.who.org, accessed May 15, 2001); we do not know what steps have been taken in that process. The Lancet published an article by Navarro in November, 2000,2 that analysed the World Health Report, focusing mainly on a series of important policy concerns. Little attention was given to methodological discussion. We therefore focus on the methodological and related conceptual issues of the report, in the hope of making an additional, constructive contribution to a thorough process of consultation that must now be opened up by WHO.
The positive contribution of the World Health Report 2000 is its stimulation of fresh thinking about a range of issues relevant to measuring health-system performance. The goals to improve average levels of health as well as distribution of health in populations, and to monitor progress toward these goals, are sound ones. Our comments are offered in the hope that they will help WHO, guided by its member states, to move ahead with an open process of conceptualisation, measurement, and documentation in studying health systems that can serve as a sound basis for policy, planning, and advocacy in the search for health and equity; unfortunately, the World Health Report 2000 does not provide such a basis. As researchers, our recommendations have largely focused on methodological concerns. However, we firmly believe that a strong and sustained response will be needed not only from the research community but from advocates for health and development globally, and particularly from the member states to whom WHO must be accountable. We hope that this paper helps to clarify key concerns on several serious issues related to the methodology of the report. Although we have focused on methodological concerns, these issues are not simply matters of technical and scientific concern, but are profoundly political and likely to have major social consequences.
Public outrage over the exorbitant prices of HIV/AIDS drugs in Africa is focussing public attention on the harmful role of global patent rules in blocking poor people's access to vital medicines. In response to mounting public pressure, World Trade Organisation (WTO) members have taken an unprecedented step in agreeing to hold a special meeting to discuss the impact of global patent rules on access to medicines. They will meet on 20 June at the WTO in Geneva.
The WTO has the power to change patent rules. As a result, this meeting, and the forthcoming WTO Ministerial in Qatar, offers the best opportunity yet to shift the balance of global patent rights in the interests of public health. The outcome of the meeting will have a critical effect on poor people's access to medicines.
Inventors need some protection but under the WTO’s Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS) they are getting far too much. Briefly stated, the Agreement, which is the product of one of the most successful corporate lobbying campaigns in history, creates effective legal monopolies for patent holders across the world, enforceable by trade sanctions. This will drive up the price of vital medicines in poor countries, benefiting narrow corporate interests at the expense of public health.
The winners will be the large northern-based companies where innovation is concentrated and which account for 90 per cent of pharmaceutical patents. The strengthened protection provided by the Agreement allows them to sell their new medicines at higher prices for longer periods in more countries. The losers are the millions of people in poor countries who will be further excluded from access to these vital medicines, and their cash-strapped government health services.
It is not suprising that the TRIPS Agreement is fast becoming the epicentre of a battle which pitches some of the world's most powerful pharmaceutical companies, backed by rich governments, against some of the world's most vulnerable people. More widely, there is a growing sense that the Agreement is fundamentally unfair and unbalanced - a fact which threatens to bring not only the patent system but also the whole multilateral rules-based system into disrepute, and which policy makers ignore at their peril.
What is certain is that TRIPS will need serious revision if it is to stem the growing public backlash against patent rules. The recent controversy over the attempts by 39 pharmaceutical companies to block a law which allowed the South African government to shop around for cheaper patented products in other countries, and which the companies claimed violated the TRIPS Agreement, gave the world a graphic illustration of why the rules need to change.
Oxfam is calling for TRIPS to be reformed so that developing-country governments have the unambiguous right to obtain the cheapest possible life-saving medicines without facing the threats of legal challenges or trade sanctions experienced by South Africa and Brazil. To this end, Oxfam is asking WTO members to agree to:
- an in-depth review of the health and development impacts of TRIPS, with a view to reducing the length and scope of pharmaceutical patent protection in developing countries, or exempting developing countries from pharmaceutical patenting
- a moratorium on trade disputes with developing countries over TRIPS compliance until a review of TRIPS is concluded, and the concerns of developing countries about its implementation are addressed
- a commitment by rich countries not to exert bilateral pressure on developing countries to implement unnecessarily strict and potentially harmful intellectual property standards (whether through bilateral or regional trade agreements, or by other means)
- outlaw the use, or threatened use, of bilateral trade sanctions for enforcing unnecessarily strict and potentially harmful levels of intellectual property protection in developing countries, such as the 'Special 301' provisions of the USA's trade act
- stronger public-health safeguards and exceptions to give developing countries the option of reducing the length and scope of pharmaceutical patenting on public health grounds. These should include:
- a strengthened and meaningful public-health safeguard in Article 8;
- the option to exempt vital medicines from patenting on public-health grounds under Article 30;
- an easing of the conditions for compulsory licensing, including restrictions on the production of medicines for export to another country where a compulsory licence has been issued, and the development of fast-track procedures for public-health purposes.
longer transition periods for developing countries before they have to implement TRIPS, based on their attainment of development milestones rather than arbitrary dates.
These are modest proposals. If agreed, they would merely mark a return to the situation for poor countries prior to TRIPS. This would not, as the pharmaceutical companies claim, significantly reduce R&D into the diseases of poverty, nor jeopardise patent protection in richer countries.
Of course, reforming TRIPS is not a panacea. A broad package of measures is needed to improve access to medicines and to ensure adequate R&D into treatments for poverty-related diseases. These include massive investment in public-health services, public funding of R&D, and comprehensive systems of tiered pricing.
Nor will reform of TRIPS provide any guarantee that all governments will take positive action to improve poor people's access to medicines. It will, however, remove a key legal obstacle that currently constrains poor governments from obtaining the cheapest possible medicines for their citizens, and allow market forces to reduce prices through generic competition.
However, attempts by developing countries to change TRIPS so that it better reflects broader social and developmental objectives have been blocked by some rich countries, particularly the US. These countries continue to repeat pharmaceutical industry scaremongering that any tampering with new global patent rules will reduce company profits and undermine R&D.
If the USA or other rich countries block proposals to reform patent rules aimed at protecting public health, developing countries should push the issue to a vote at the forthcoming 4th Ministerial. They have little to lose. It is true that if the USA believes its commercial interests are being prejudiced at the WTO, it's commitment to multilateralism may weaken. But it would be far more damaging for public health and the multilateral system if developing countries renounced their efforts to seek pro-health and development reforms of TRIPS on these grounds. Moreover, the USA is already using bilateral pressure, including the threat of trade sanctions to ratchet up intellectual property standards outside the WTO.
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The World Trade Organisation (WTO) is concerned with equity and provides regulatory measures to maintain it; it is just not the kind of equity we mean when we talk about social equity or equity in health. The WTO concern with equity is that of trading services and goods, in which services and goods should be treated equally whether produced by multinational corporations or local communities as we have seen in the banana dispute settlement case. At a more general level the WTO social policies are based implicitly on a residualist model, where social policies are seen as poor relief rather than policies dealing with e.g. inequalities. Some agreements, such as the Agreement on Trade-related Intellectual Property Rights (TRIPS), are also considerably biased towards the corporate sector and its needs.
The TRIPS positions reflected in the Doha declaration appear to be a step forward in compulsory licensing in comparison to the positions of the EU and the US some years ago. On the other hand the relevance of the Doha public health declaration - and its interpretation - in practice remains to be seen. Further debates around TRIPS concerning parallel importing, compulsory licensing and exports and differential pricing are also taking place in the TRIPS council. These results of these debates may show to what extent measures to address problems of access to pharmaceuticals have become a means of supporting corporate greed of the pharmaceutical industry via regulatory requests rather than means to address health needs.
In health TRIPS is important, but we can expect that the General Agreement on Trade in Services (GATS) may become even more important. The WTO negotiations on the GATS are underway and pose many important questions both in terms of health services and equity as well as the possibilities to implement broad public policies e.g. regulatory prohibition of advertising of products hazardous to health. One example of the latter is a problem of health regulations and trade in advertising services. Those countries which have included advertising services under GATS commitments may have limited significantly their possibilities of regulating or prohibiting advertising of products hazardous to health. Many aspects of health services are also dealt with under other categories of services, such as professional or financial services. It is also important to note that while GATS is marketed as a regulatory agreement this regulatory role remains in the context of ensuring equity and equal treatment of service providers (NGOs/corporations - local/international). This regulatory role is thus concerned more about service provider interests than with social rights of citizens and equity in access to services.
Other matters relate to the Agreement on Sanitary and Phytosanitary Measures (SPS). Important items in these discussions relate to the extent to which precautionary measures as well as public health policies can be seen as trade barriers of rich countries by poorer countries with high implementation costs to poorer countries. The problem is that these arguments may become means of down regulation in health protection rather than ensure that all countries have sufficient support and resources for implementation of the SPS Agreement. The Doha declaration also successfully broadened the trade agenda to include some new areas, such as competition and investments, to the WTO negotiation agenda. There are some concerns that the negotiations on the new areas may in practice be means for inclusion of aspects of the Multilateral Agreement on Investment (MAI) to the WTO Agreements. These aspects could include such which could allow that in addition to countries also private sector corporations could be able to appeal to WTO dispute settlement.
In many ways health policies are easily undermined by corporate export and trade interests which are in practice an integral part of WTO negotiations. The WTO debates are thus biased towards the promotion of private sector interests. The usual emphasis on countries and their interests in trade policy debates also limits opportunities to see the common systematic health issues that affect most countries. While there is no point of taking all health matters to the WTO, it is a task for health activists to ensure that national and international health policies and measures to maintain equity are not compromised by trade policies.
Pint-sized Edgar was 10 when he left his mother's shack in eastern Zambia to seek his fortune in Lusaka, the bustling capital of 1.3 million people.
The puny but plucky youngster had no inkling about life in the city, but he was not perturbed. Nothing, he thought, could be worse than the miserable life he had led in Lundazi.
It was an existence of few pleasures and endless chores. From morning, when he hauled several bucketfuls of water from a communal well half a kilometre away, to midnight, when the neighbourhood tavern at which he tried to sell his mother's hard-boiled eggs closed, the little boy knew no respite. When business was slow, his mother held him personally responsible and whipped him or denied him his supper, or both.
Two years on, Edgar has given up the quest for his fortune. He starts his day in the central business district, where he alternatively begs and runs errands to raise enough money for the imperative dose of "glue" - an intoxicating concoction of petrol and adhesives that the destitute sniff to dull the harsh realities of life on the streets. At midday, he walks over to Fountain of Hope, a non-governmental organisation outside the city centre that rehabilitates street children, for a free meal.
Edgar's life, multiplied many times over, represents the lot of thousands of the children that swarm the streets of Lusaka in a desperate quest for survival. Their number has risen markedly over the past few years, doubling to 75,000 since 1991.
The conventional wisdom is that the increase in their number is a direct consequence of HIV/AIDS. It is generally assumed that most of the children are forced onto the streets by poverty after one or both of their parents died of AIDS-related complications. According to the ministry of health, Zambia had around 520,000 AIDS orphans in 1999. That number is expected to rise to 895,000 by 2009 and to 974,000 by 2014.
"Perhaps half of all street children are orphaned children, indicating growing pressures on extended families to cope with the rapidly increasing orphan population," the ministry said in a report entitled 'HIV/AIDS in Zambia'.
However, new evidence suggests the HIV/AIDS pandemic is not necessarily the main reason that a growing number of Zambian children are living on the streets. To begin with, around half of the 75,000 street children in Lusaka are not orphans. Moreover, recent studies have revealed the lot of Zambian children with parents is no different from that of orphaned ones.
"There is little difference in economic status between orphan and non-orphan children. Seventy-five percent of orphan children are found in households living below the poverty line and 73 percent of non-orphan children are also living in households below the poverty line," the government's 1999 Situational Analysis of Orphans and Vulnerable Children points out. "These problems (of food shortages, poor health, inadequate education and bedding) actually affect all the children, orphan and non-orphan, and indeed, all the community members," the report added.
Moreover, there is a growing realisation that poverty is not the only factor that forces children to live on the streets. That, at least, has been the experience of Foundation of Hope, which deals with an average 500 street children per day, providing them with food, schooling and shelter.
"A lot of other factors besides poverty, including psychological pressures, force children to leave their homes. Some leave to escape abuse of one sort or another, and others are compelled to go on the streets by peer pressure,"
Fountain of Hope administrative officer Emmanuel Mukanda told IRIN.
According to Mukanda, children who leave their homes for reasons other than economic pressure tend to be more difficult to rehabilitate than those forced on the streets by poverty. "Those children who ran away from home often require intensive counselling. The others, who are forced onto the streets by poverty, are relatively easy to reform. Once their basic material needs are met, their main problems are over," he said.
The realisation that many children end up on the streets because of psychological pressures prompted Fountain of Hope to extend its counselling services to the parents of runaway children. "Many parents come here to look for their missing children, and we try to counsel them along with the children. Sometimes, we succeed in bridging their differences, and the children return home," said Mukanda.
Observers, including the government and UNICEF, see the misconception that destitution among Zambian children is largely AIDS-related as sometimes diverting communities away from effective interventions. They argue that while the plight of orphan and non-orphan poor children is broadly similar, their specific needs can be different.
"There is ... value in distinguishing between orphans and other vulnerable children when considering psychological support, protection of rights, interventions targeted to their specific status as orphans and epidemiological surveys," notes the government's Situational Analysis of Orphans and Vulnerable Children.
Moreover, Zambia, a country of 10 million people, has 19 non-governmental organisations whose core missions are to alleviate the plight of AIDS orphans. Few such organisations exist to address the concerns of destitute non-orphan children. However, there are signs that society is beginning to appreciate the fact that the problem of destitute children goes beyond AIDS orphans.
"Although communities start by looking at the needs of orphans, they soon reformulate their criteria to include other vulnerable children, namely those who are extremely poor," UNICEF notes in a report entitled, 'Children Orphaned by AIDS'.