Global Policy Forum

Conference for Ireland's EU Presidency

By Mary Robinson

My key message is that HIV/AIDS is one of the most serious human rights issues of this century. It must be tackled with human rights values and a gender sensitive approach. Those living with HIV/AIDS know the extent of the discrimination. I heard this from so many victims during my term as UN High Commissioner for Human Rights and since, women in rural areas in African countries who feared losing their home and being rejected by their families. An elderly man in Delhi refused hospital treatment for a broken hip because he was HIV positive. Discrimination against the gay, lesbian and transsexual community told to me by a group in Argentina every one of whom had a personal story of rejection and hardship. As well as being a huge health issue, we cannot tackle HIV/AIDS without recognising it as an enormous human rights challenge.

We are at a critical point along the trajectory of HIV/AIDS in Europe and Central Asia. If we are to avoid the painful path that many other countries have stumbled down, prevention must become our guide. We have already missed many opportunities to contain HIV/AIDS at negligible levels in the region, and we must now contend with what is a growing epidemic, particularly among young people and marginalized populations. Regional bodies, governments and civil society groups must take responsibility and take action for reducing and reversing the spread of HIV/AIDS.

We gained some idea yesterday about the extent of the epidemic in Europe and Central Asia. Between 1.2 and 1.8 million people are living with HIV/AIDS in the East, where around 230,000 people became newly infected with HIV in 2003 alone. Injecting drug use continues to drive the epidemic but unsafe sex is increasingly a factor among young people. Around 600,000 people are living with HIV in Western Europe, and while wide availability of anti-retroviral drugs has dramatically decreased AIDS-related deaths, there were around 40,000 new infections in this area last year. Most of these new infections were due to unsafe sex, with a growing proportion due to heterosexual transmission. Across the entire region, young people are particularly badly affected, most of all in Eastern Europe and Central Asia, where 80% of those living with HIV are under 30 years of age. Many injecting drug users in this area are very young, with around 25% estimated to be under 20 years old. While Italy and Spain still lack national surveillance systems, in the East inadequate health services and monitoring mean that figures are likely gross under-estimates. The increases in new HIV infections, the number of young people affected, and the changing pattern of infection from injecting drug use to sexual transmission imply that prevention efforts have been hugely inadequate. In addition, the window of opportunity to contain the epidemic with targeted interventions for drug users has almost closed, and much broader HIV education, awareness campaigns, health service provision, and investment of resources are now required.

We must place these figures into their global context, because HIV/AIDS is a worldwide problem affecting increasingly linked national and regional communities, and because the experiences of other countries provide valuable lessons, both warnings and solutions. It is often said that HIV/AIDS is a threat to global development. To regard it as a threat is akin to regarding rising water levels as a ‘threat' when you are standing knee deep in flood water in your living room. HIV/AIDS is deeply affecting global development toady, including human rights, economic stability, public health, and security, and will continue to do so for decades. We must wake up to the reality of HIV/AIDS as a global problem that is increasingly taking hold in this region.

We cannot allow complacency to slow the response at this critical stage of the epidemic's growth in this region. As nations we share some responsibility for the failure of the global community to respond adequately to this global crisis. There are approximately 40 million people living with HIV worldwide, of whom nearly two thirds are in sub-Saharan Africa. South Africa has 5 million people living with HIV, the highest absolute figure of any country in the world. Botswana and Swaziland have reached HIV prevalence levels of nearly 40%, and other countries have passed 30%, levels that seemed unthinkable a couple of years ago. These countries, like many in Europe and Central Asia, once had low prevalence levels. They once had only a few cases of HIV, then a few more, which were, or were thought to be, concentrated among certain groups. With a few commendable exceptions, their leaders and the international community did little to acknowledge the problem and less to implement the targeted and widespread prevention efforts essential to tackling it. We can now see the destruction of human lives and livelihoods wrought by this inaction. We must not forget the millions who deserve a life free of AIDS in Africa and elsewhere, the majority who are not infected and who still lack prevention education and the large numbers who are entitled to anti-retroviral drugs to save their lives, just as other global citizens in Western Europe have been guaranteed this right. Simultaneously we must learn from the mistakes of inaction and from the effective interventions implemented by governments and, more often, civil society in addressing HIV/AIDS in Africa and elsewhere.

The costs of inaction on prevention have already been spelled out for us as the epidemic has taken hold in other countries. National development has been damaged and economic productivity hugely reduced, especially as young wage-earners have fallen ill in larger numbers. Economic vulnerability fuels AIDS which in turn worsens poverty, particularly for women and children. Hard-won public health gains have been eroded and health systems have strained and collapsed, unable to cope with the volume of AIDS cases. Highly skilled workers, teachers and professionals have been lost. Stigma and discrimination have further isolated already marginalized groups, preventing those most at risk from accessing prevention and testing services and limiting access to treatment for those already infected. We can see the results of prevention failure beginning to take hold in Europe and Central Asia, but we still have a great opportunity to change this trajectory, as some Western European countries have done. We must remember that at every stage of this epidemic, investment of national resources into widespread, effective, comprehensive prevention now means colossal savings later, most importantly in terms of the human lives saved, but also in terms of the exponentially increasing financial costs of prevention and treatment that will be required only a few short years into the future.

It would be foolhardy to persist in the pretence that the last 20 years of this global epidemic have not happened. Continuing stigma, ineffective abstinence-only programs, punitive treatment of drug-users, further marginalization of at-risk groups, failure to include people living with HIV/AIDS at policy-making levels, association of HIV with sin, morality or ‘deviant' behaviour, beliefs that ‘it won't happen here' – no matter what country you are in, all of these stances reflect an inability to realize that it is now 2004, not 1984. We must discard these ineffective and dangerous opinions and base our prevention efforts on evidence of what we know works.

We know it works to place human rights at the centre of the response. Non-discrimination, legal protection, and equal access to services are critical. Constitutional and national protections of the rights of those infected and affected by HIV/AIDS are still lacking in most countries. States have a particular responsibility to meet their human rights commitments, and they have the mechanisms to do so. For a long time most countries have recognised that it is wrong to discriminate on the basis of gender, race or religious beliefs. Over time we have realized that it is also wrong to discriminate on the basis of physical ability or sexual orientation. It may now be time to realize that discrimination based on health or serostatus has no place in our societies. We must act to ensure that the right to life, the basis of all human rights, and the right to health, recognised in the WHO founding charter, are guaranteed to all citizens. What is needed to ensure this right equally for all human beings varies between individuals. Needle exchanges, drug treatment programs, and outreach safety programs are needed to ensure the health of drug users. Programs for children, we must be open in challenging stigma, at every level. The stigma associated with HIV/AIDS often intersects with already marginalized communities, whether ethnic minorities, drug users, rural dwellers, migrants or refugees. Governments can take action to overcome these multiple forms of marginalization and ensure services benefit these at-risk populations. People living with HIV/AIDS should be fully involved in policy-making and advisory capacities. The role of government representatives as opinion leaders should not be forgotten, and government representatives can take the lead in speaking openly about HIV/AIDS and acting positively, such as by taking HIV tests. Civil society creates valuable space, and holds governments accountable. Advocacy initiatives, such as the National HIV Testing Day in the U.S. during June, involve the general public in normalized stigmatized activities. The media must be involved in challenging negative stereotypes, spreading accurate information and raising awareness.

Gender equality is at the core of a human rights approach to HIV/AIDS, and forms the basis of our work on HIV/AIDS in the non-governmental organization I now head, Realizing Rights: The Ethical Globalization Initiative. We must have a gendered response, sensitive to the needs and multiple vulnerabilities of women while recognising and strengthening their own agency. When women lack social and economic power, their ability to negotiate relationships is compromised. While more injecting drug users are male, female drug users remain marginalized and unlikely to access services. Women are at higher risk of sexual transmission, which can occur with a drug-using partner. Women make up an increasing proportion of those newly infected with HIV, for example, in the Russian Federation 33% of new HIV infections in 2003 were among women, compared to 24% a year ago. Violence against women fuels the epidemic and enables the exploitation of women, including trafficking and prostitution. Minority women, refugees and migrants are particularly at risk. Female condoms should be made increasingly available and reduced in price, which will become more cost-effective as their popularity increases. The male condom as the primary prevention method available is male-controlled, and the development of a microbicide must be accelerated and made a global funding and research priority. The private sector and government-funded research can meet this essential need. Mother to child transmission must be addressed, but the well-being of women in their own right must also be protected through anti-retroviral treatment provision to adults. It is a human rights imperative that prevention information, confidential counselling and testing, treatment for sexually transmitted diseases and comprehensive drug and anti-retroviral treatment be available to men and women equally.

We know what works. We need to adopt comprehensive programs, rather than piecemeal prevention projects. We need outspoken leaders and brave actions. We need insightful, accurate and sensitive media awareness campaigns, in every medium and every language. We need data disaggregated by both age and gender to address this epidemic adequately, and prevention interventions targeted in a gender-aware and youth-friendly way. We must have effective treatment of sexually transmitted infections, available in contexts that are comfortable for men, women and young people. We need sexual and reproductive health information and services available and confidential for young people. Strictly confidential, voluntary and normalized testing with pre- and post-test counselling needs to be widely available. We need many and well-run needle exchanges as well as needle availability, drug treatment programs and outreach by and to injecting drug users. For young people, effective strategies include peer-led programmes, school interventions and adolescent-friendly health services. We must work together to form effective partnerships, within nations between government, civil society, private sector and academic participants, and between nations at the regional and global levels. We need structural interventions and long-term, sustainable investment and development to tackle the structural factors that fuel HIV/AIDS risk behaviours, such as unemployment, poverty, gender inequality, drug use, prostitution and violence. We need to identify the obstacles, and find creative ways to overcome them. We have the knowledge, we have the evidence base which shows us what works, and we have the resources available if we will mobilize them with determination and commitment.

Action on prevention now will save millions of lives and billions in investment later. Effective prevention rarely makes headlines. News usually highlights the negative, the lives lost, the growing numbers infected, the destruction of communities and countries. We are all too familiar with these figures and images. It is harder to engage people on what doesn't happen, on the lives saved, the people who do not get sick, the families and societies that are not destroyed by AIDS, because effective HIV prevention was implemented in time. Yet aiming for these absences is exactly what we must do to meet the Millennium Development Goal to have halted and begun to reverse the spread of HIV/AIDS by 2015. Eleven years from now, I hope we will read only this type of news, and reflect on the catastrophe our actions successfully prevented.