Paris Declaration

Paris AIDS Summit - 1 December 1994

GIPA Principles
Greater Involvement of People Living with or Affected by HIV/AIDS
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We, the Heads of Government or Representatives of the 42 States assembled in Paris on 1 December 1994:

I. Mindful

that the AIDS pandemic, by virtue of its magnitude, constitutes a threat to humanity,

that its spread is affecting all societies,

that it is hindering social and economic development, in particular of the worst affected countries, and increasing the disparities within and between countries,

that poverty and discrimination are contributing factors in the spread of the pandemic,

that HIV/AIDS inflicts irreparable damage on families and communities,

that the pandemic concerns all people without distinction but that women, children and youth are becoming infected at an increasing rate,

that it not only causes physical and emotional suffering but is often used as justification for grave violations of human rights,

Mindful also

that obstacles of all kinds - cultural, legal, economic and political - are hampering information, prevention, care and support efforts,

that HIV/AIDS prevention and care and support strategies are inseparable, and hence must be an integral component of an effective and comprehensive approach to combating the pandemic,

that new local, national and international forms of solidarity are emerging, involving in particular people living with HIV/AIDS and community-based organizations,

II. Solemnly declare

our obligation as political leaders to make the fight against HIV/AIDS a priority,

our obligation to act with compassion for and in solidarity with those with HIV or at risk of becoming infected, both within our societies and internationally,

our determination to ensure that all persons living with HIV/AIDS are able to realize the full and equal enjoyment of their fundamental rights and freedoms without distinction and under all circumstances,

our determination to fight against poverty, stigmatization and discrimination,

our determination to mobilize all of society - the public and private sectors, community-based organizations and people living with HIV/AIDS - in a spirit of true partnership,

our appreciation and support for the activities and work carried out by multilateral, intergovernmental, non-governmental and community-based organizations, and our recognition of their important role in combating the pandemic,

our conviction that only more vigorous and better coordinated action worldwide, sustained over the long term - such as that to be undertaken by the joint and cosponsored United Nations programme on HIV/AIDS - can halt the pandemic,

III. Undertake in our national policies to

protect and promote the rights of individuals, in particular those living with or most vulnerable to HIV/AIDS, through the legal and social environment,

fully involve non-governmental and community-based organizations as well as people living with HIV/AIDS in the formulation and implementation of public policies,

ensure equal protection under the law for persons living with HIV/AIDS with regard to access to health care, employment, education, travel, housing and social welfare,

intensify the following range of essential approaches for the prevention of HIV/AIDS:

IV. Are resolved to step up international cooperation through the following measures and initiatives.

We shall do so by providing our commitment and support to the development of the joint and cosponsored United Nations program on HIV/AIDS, as the appropriate framework to reinforce partnerships between all involved and give guidance and worldwide leadership in the fight against HIV/AIDS. The scope of each initiative should be further defined and developed in the context of the joint and cosponsored program and other appropriate for a:

We urge all countries and the international community to provide the resources necessary for the measures and initiatives mentioned above.

We call upon all countries, the future joint and cosponsored United Nations programme on HIV/AIDS and its six member organizations and programmes to take all steps possible to implement this Declaration in coordination with multilateral and bilateral aid programmes and intergovernmental and non-governmental organisation

REPORT OF THE STRATEGIC MEETING ON BLOOD SAFETY

Paris, 13-14 September 1994

Introduction

Blood transfusion saves countless lives every year. In developing countries, the main beneficiaries are women who haemorrhage during pregnancy or childbirth, severely anaemic children under five years old, and trauma victims.

It has always been important to ensure that transfused blood does not transmit any infectious agents to the recipient, such as those causing syphilis, hepatitis and malaria. Today, blood safety is more crucial than ever because an even more lethal virus - HIV - has joined the list of transmissible agents. For a person transfused with HIV-infected blood, the probability of becoming infected is close to 100%.

The overall risk of HIV transmission through blood in developed countries is now estimated to be less than 1 in 100 000. In developing countries, however, blood is considerably less safe. For example, an estimated 4 million blood donations a year are still being transfused without prior testing.

Situation analysis

In developing countries, the major concern is the safety and adequacy of whole blood, red cell concentrates and fresh plasma, although the safety of other blood products both imported and domestically produced i growing in importance. At the same time, countries should attempt to diminish the need for blood transfusion in the first place, for example by reducing the incidence of anaemia through better nutrition and the prevention of malaria and other parasitic infestations.

In the developing world, the prime need is to ensure blood safety through a blood transfusion service (BTS) that coordinates and manages:

In many developing countries, blood safety is still compromised by organizational and financial difficulties at one or more of these three stages. Staff trained in recruiting and retaining donors, or in carrying out testing assays, are often in short supply. There may not be a continuous supply of test kits. Only a few developing countries promote and monitor the implementation of guidelines to minimize unnecessary transfusions, and blood substitutes are often unavailable.

Perhaps the prime issue is that of national political commitment. Many developing countries have yet to organize a BTS that is financed by sufficient resources from the national health budget and supported by appropriate legislation, regulations or guidelines covering all aspects of blood safety from donor confidentiality and care to the testing, processing and use of blood and blood substitutes. Blood safety cannot be assured without a clear acknowledgement that it is the responsibility of government.

Even with national commitment, many developing countries will be unable to achieve blood safety without external support. Currently, international bodies and bilateral donor agencies provide some resources and technical assistance. However, there are both gaps and duplication of effort, in part because there is no single inventory of needs and responses.

In developed countries, where the security of red cell transfusions has been safeguarded, the major concern is the safety of other blood products used domestically or moving internationally.

Recent events have highlighted deficiencies in blood product processing and the application of Good Manufacturing Practice (GMP - can be defined as all the elements in established practice that will collectively lead to final products or services that consistently meet expected specifications) in some developed countries. Public confidence in blood transfusion services has suffered as a result. Key issues include the need to select donors from population groups with the lowest risk of transfusion-transmissible diseases, and to be able to trace all blood products from donor to recipient.

Priorities for action

In sum, blood safety is an ethical imperative for governments. It is cost-effective: ensuring blood safety through a coordinated BTS usually costs far less than caring for and treating recipients who become infected through contaminated blood. And it is feasible. The virtual elimination of the transmission of HIV and many other transfusion-transmissible infections through blood is a goal that is within reach of every country.

The Paris AIDS Summit could therefore endorse the following principles and national priorities, and launch the global initiative outlined below.

Basic principles

Priorities for national action

All governments should endeavour to:

Global initiative

The Paris AIDS Summit could launch the World Alliance for Blood Safety to maximize blood safety and the quality of care of both patients and donors worldwide.

The activities of the Alliance would be managed by a Secretariat located in an existing global institution. The Secretariat would serve as the hub of an international information and coordination network. It will:

The Alliance would convene a Council comprising experts in blood safety and representatives of governments, regional groupings, and international governmental and non-governmental institutions involved in the promotion and assurance of blood safety. The Council would:

Report of the Strategic Meeting on Development and Accessibility of Preventive Technology including Vaccines and Microbicides for HIV/AIDS

Paris, 15-16 September 1994

Introduction

The impact of HIV/AIDS on individuals, families and society is so devastating - especially in the developing world, where 90% of HIV infections occur - that it lends special urgency to the search for effective and accessible products for prevention. For example, the search for a vaccine against HIV must not be allowed to stagnate, no matter how long, complex and frustrating the endeavour, for immunization is probably key to bringing the pandemic under control. Female-controlled barriers to HIV (and possible other sexually transmitted pathogens) such as vaginal microbicides are urgently needed and may lend themselves to faster development than a vaccine.

Situation analysis

Development

The scientific community has made great strides in understanding the etiology and pathogenesis of AIDS. That scientific understanding, derived mainly through research conducted in academic institutions, industry and public research agencies around the world, has provided the basis for the development and improvement of antiviral drugs, vaginal microbicides and drugs against opportunistic infections. Likewise, a first generation of candidate vaccines has been brought to Phase I/II clinical trials, although it is not yet known if these vaccines are effective in protecting against HIV infection.

Additional research is badly needed to improve existing preventive products and to manufacture and test new ones. It is therefore a matter of concern that development efforts in the private sector may be stagnating, especially as regards vaccines. As explained below, major barriers are inhibiting the development, evaluation and marketing of preventive technology, especially products intended for developing countries which have limited commercial potential in the industrialized world.

Accessibility

What are the prospects for ensuring access to future products, including vaccines? A glance at history is instructive: from initial approval to large-scale distribution in developing countries, it took around 15 years for the polio vaccine and some 15-20 years for the measles vaccine. The original plasma-derived hepatitis B vaccine was licensed over a decade ago, yet large-scale distribution in developing countries is just starting. This pace would be unacceptable for the galloping HIV pandemic. Clearly, we cannot afford to repeat history.

Barriers to development and accessibility

Any analysis of the barriers to development and accessibility must begin with the observation that most products have been and are likely to be developed by the private sector. Industry has a mission to develop new products, but understandably those products must be profitable. Under these circumstances, what are the barriers that a pharmaceutical company might perceive when developing business strategies for HIV/AIDS prevention products? From numerous national and international meetings organized with industry on this subject, there is general consensus regarding at least the following barriers:

Impressive efforts have been undertaken by several academic and public sector organizations, both national and international, to overcome these barriers in collaboration with industry. Meetings with industry have been organized, including by WHO and the United Nations Development Programme (UNDP); the National Institutes of Health, the Institute of Medicine and the Department of Health and Human Services in the USA; and the Fondation Marcel Merieux and the Rockefeller Foundation. Through these interactions, academic and public-sector organizations and industry have attempted to address not only the disincentives to product development but also the barriers to ensuring access to new products.

Progress has nevertheless been far from what is needed. The Paris AIDS Summit offers a unique opportunity to harness political momentum toward the twin goals of HIV product development and accessibility.

Priorities for action

The Paris AIDS Summit could endorse the following principles and national priorities and launch the global initiative outlined below.

Basic principles

National priorities

Global initiative

Recognizing the magnitude and spread of HIV infection and the difficulties inherent in developing safe, effective and usable prevention technologies and making them accessible, the Paris AIDS Summit could call for a new initiative with a mandate to accelerate the development and worldwide accessibility of HIV preventive technologies, particularly vaccines and vaginal microbicides. In anticipation of the forthcoming joint and cosponsored UN programme on HIV/AIDS, the Summit could call on WHO to develop this initiative in partnership with other international organizations, governments, private industry, communities, and non-governmental organizations including foundations, scientific institutions and representatives of persons with HIV/AIDS, from developed and developing countries alike, ensuring a balanced representation of all interests. Preparation of a global, unified plan could begin immediately following the Summit.

Research and development objectives

The initiative would accelerate and fill critical gaps in current research and development of HIV preventive technologies, particularly vaccines and vaginal microbicides:

Accessibility objectives

The initiative would ensure accessibility of newly developed products by:

Ethical principles

The initiative would be governed by the following ethical principles:

Report of the Strategic Meeting on Care and Support of People affected by HIV/AIDS

Geneva, 26-27 September 1994

Introduction

WHO estimates that there are some 13-14 million adults worldwide now living with HIV infection. Around 400 000 of them have already reached the stage of severe immunodeficiency known as AIDS, with its attendant opportunistic infections such as fungal infections (of the mouth and oesophagus) and tuberculosis. AIDS is incurable and ultimately fatal.

In addition, in 1994 alone there will be between 150 and 300 million cases of curable sexually transmitted diseases (STDs). HIV infection and the other STDs are linked in a number of important ways. For example, an untreated STD increases the risk of HIV transmission through sexual intercourse by as much as 5 to 10-fold, and both HIV and the other STDs can be prevented through safer sex. WHO therefore recommends linking or integrating national HIV/AIDS and STD control programmes.

The HIV epidemic is still growing, at a rate of more than 6000 new infections daily. By the year 2000 there will have been a cumulative total of 30-40 million HIV infections and around 10 million AIDS cases. At the turn of the century, more than 20 million adults with HIV infection will be alive, millions of whom will go on to develop tuberculosis a disease that can be fatal if left untreated, but highly curable with an effective multi-drug regimen of several months' duration.

Clearly, the challenges to public health and health care systems posed by these infectious diseases will continue well into the next century. How are health care systems currently coping with the challenge, and what are the prospects that people with HIV/AIDS will receive the care and support they need in the decades to come?

Situation analysis

Impact of HIV/AIDS on healthcare systems

As a chronic and ultimately fatal disease, associated with severe but often treatable infections, HIV/AIDS makes heavy demands on the health care system at all levels. Unfortunately, these demands come at a time of great financial vulnerability for health systems and at a stage, particularly in the developing countries, when a great deal of work remains to be done to bolster primary health care. Primary care is intended to be the interface of contact between communities and the national health care system, bringing health care as close as possible to where people live and work.

Home-based and community-based care has special relevance for people with HIV/AIDS, in whom periods of illness alternate with periods of relative well-being and who thus require only intermittent hospital care. Unfortunately, for the reasons explained below, in many countries this level of the health system is not strong enough to support the brunt of HIV/AIDS, most of which currently falls on the hospital level.

For the moment, therefore, a good indication of the impact of HIV/AIDS on the health care system is the proportion of medical ward beds occupied by hospitalized patients with HIV infection. Occupancy is as high as 80% in some tertiary-level hospitals in high-prevalence countries.

HIV/AIDS also has a major impact on health care staff. Caring for large numbers of young, incurably ill patients is very stressful, particularly in hospitals. Fear and lowered morale are resulting in staff shortages, absenteeism and burn-out.

Health system resources and management

Health care workers - the prime resource of health systems - sometimes have attitudes towards people with HIV/AIDS that constrain the quality of care they are able to offer. Uncaring or stigmatizing attitudes are deeply hurtful and can even lead HIV-infected people to forego care altogether, especially in the early stages when they may not wish others to know about their illness.

Training aimed at inculcating positive attitudes to AIDS is thus needed. In addition, health workers of all categories need better HIV/AIDS recognition and care skills - all too often, individuals seeking care for early symptoms of HIV-related illness enter and leave a health facility without recognition of their seropositivity.

Because fear of becoming infected with HIV is widespread among health care staff, they need training in the universal precautions to be followed in handling blood, and assured of the necessary supplies, so that they can protect themselves and their patients from transmission in the health care setting.

Another constraining factor is that low-cost essential drugs, including those for STDs and tuberculosis, are in perennially short supply in many public sector health systems a problem now exacerbated by the additional burden of illness imposed by HIV/AIDS. The problem stems in large part from inadequate budget allocations. Many developing countries spend an average of less than US$ 2.00 per person annually on drug supplies - not enough to purchase the required quantities of low-cost essential drugs, most of which must be imported and paid for in hard currency.

AIDS patients, especially in developing countries, suffer needlessly for lack of simple, inexpensive drugs such as codeine phosphate. The drugs needed for pain relief are often inaccessible to them - in large part because national regulations and procedures make the administration of analgesics (especially narcotics) difficult or impossible in the very places where these drugs are needed most, namely at the community and district level.

In many countries, hospitals (particularly tertiary facilities) are the main providers of care for HIV/AIDS - even, inappropriately, primary care. Patients often bypass local health facilities and go directly to higher levels of the health system. One reason is that individuals who suspect they have HIV/AIDS - still a highly stigmatized condition - may prefer the anonymity of a larger health facility. The only remedy for this is to create a more positive social climate, free from stigma and discrimination. But other causes of "bypassing" could be remedied by better health system management. The fact is that peripheral facilities, particularly in rural areas, are often starved of resources. Public funds tend to be concentrated on buildings and equipment for the tertiary level, at the expense of investment in health centres and other lower-level facilities. Trained staff are poorly distributed and especially thinly spread at the periphery.

Perhaps the most burning issue is how to strengthen the community level of the health system - the focus of primary health care. In many countries, resource shortages at the peripheral district) level, organizational weaknesses, and even rivalry between governmental and non-governmental entities are hampering the contribution that communities could be making to the care of people with HIV/AIDS. Because of their outreach and local contacts, community-based organizations often have access to individuals needing HIV/AIDS care, including people belonging to socially marginalized groups. These informal organizations need to be strengthened and backed up by referral at the district (intermediate) level of the health system. This implies a devolution of responsibility and power, including the control of financial resources, towards the district and community. Also required is a bridging mechanism between these informal organizations and the formal health care structures, both private- and public-sector.

Priorities for action

The Paris AIDS Summit could endorse the following principles and national priorities and launch the global initiative outlined below.

Basic principles

Priorities for national action

Governments should strengthen HIV/AIDS care by:

Global initiative

Recognizing the enormous challenges posed by the expanding HIV/AIDS epidemic and the feasibility of providing comprehensive care, the Paris AIDS Summit could launch a Global Care Initiative with the mission of enabling countries to provide an essential package of comprehensive care for people with HIV/AIDS.

The Initiative would address as a priority countries in greatest need those who are resource-poor and have high HIV/AIDS prevalence.

The Summit could call on WHO to work with other United Nations agencies (in anticipation of the establishment of the joint and cosponsored UN programme on HIV/AIDS) to launch the Initiative without delay. As a first step, an essential package of comprehensive care for HIV/AIDS would be defined and guidelines for its application prepared through broad consultation with people with HIV/AIDS and others.

To enable countries to provide such a package, the Initiative would as a matter of urgency:

Financing the Global Care Initiative would require new sources of funding. To this end, Heads of Government could commit themselves to making essential HIV/AIDS care a priority, serving as patrons for global fund-raising events, and appealing personally to companies and other private sector sources for financial and other support.

Report of the Strategic Meeting on Prevention (HIV and STDs)

Geneva, 5-7 October 1994

Introduction

By mid-1994, a cumulative total of over 17 million men, women and children globally were estimated to have contracted HIV infection. WHO estimates that every 24 hours more than 6000 people become infected. By the year 2000, a further 14 to 24 million people worldwide may acquire HIV infection, bringing the total to 30-40 million, and the epidemic is projected to continue well into the next century.

HIV had a head start, spreading widely in a few countries in 1970s and early 1980s. But now we know what causes AIDS and how HIV is transmitted. We have learned from a decade of experience that certain approaches to prevention can and do work.

Situation analysis

A comprehensive HIV prevention programme should include approaches which address immediate HIV transmission mechanisms and approaches which address the underlying factors in the environment. There is no standard, universally valid package of approaches. Rather, these need to be selected according to the local context and tailored to the needs of the target population. However, there is evidence that approaches have a better chance of producing the desired result when a number of them are combined.

A supportive environment

One of the most important lessons learnt over the past decade is that a supportive environment is vital to the success of efforts to prevent the transmission of HIV through sex and drug use. A supportive environment is one in which safer behaviour is made easy, accepted and even routine. It is an environment with:

Such an environment is rare. The typical backdrop to HIV prevention includes sexual and socio-economic subordination of women; economic factors fuelling migration; discriminatory practices; poverty; intolerance; lack of AIDS/STD and sexual health education in schools; inaccessible health (and especially STD) services; and laws that heighten the vulnerability of marginalized populations. It is even claimed that in many countries, only affluent, well educated city-dwelling males may be capable of protecting themselves from HIV. While almost certainly an exaggeration, this reflection points up how far we have to go in building a supportive environment.

Some effective approaches

A number of approaches have been shown to reduce sexual transmission of the virus. Communication to promote safe behaviour needs to offer a range of options, from abstinence and mutually faithful relationships to non-penetrative forms of sex and intercourse protected by condom use. This approach needs to be coupled with condom promotion and provision. A similar harm-reduction approach combining communication to promote safe behaviour along with support services is effective in reducing HIV transmission through injecting drug use.

The prevention and treatment of other sexually transmitted diseases (STDs) is important as well. WHO estimates that 150 to 300 million curable sexually transmitted infections occur annually. If left untreated, they can increase HIV transmission as much as 5 to 10-fold. STDs cause both acute illness and serious long-term complications such as infertility and ectopic pregnancy. In developing countries, the World Bank ranks STDs as the second greatest health problem (after maternal mortality) for women aged 15 to 44. STDs are thus a public health priority in their own right.

Communication to promote safer sexual behaviour

  The main approaches under this heading are communication through the media and interpersonal communication.

The role of the media in promoting family planning is well documented. More recent evidence shows that communication through the media can also improve AIDS knowledge and attitudes and increase safe sexual practices. The "Stop AIDS" campaign in Switzerland contributed to a 42% rise in condom use among young people aged 17 to 30.

Institution-based interpersonal communication is important, especially in schools and workplaces. WHO has evidence suggesting that half of all new infections and 60% of female infections in mature African epidemics may now be occurring before age 20, which underscores the importance of school AIDS programmes. A recent WHO review demonstrates that school education about sexual and reproductive health promotes more responsible sexual behaviour without increasing sexual activity. Indeed, many studies have shown it has the contrary effect, i.e. a delaying in the onset of sexual intercourse in many studies. In a recent review of 7 Zimbabwean workplace AIDS programmes, a reduction in STDs was reported by each of the 5 programmes for which STD data were available (median reduction 59%, range 47%-80%).

Community-based interpersonal communication has proved effective in many contexts. Within one year, a peer education programme in the United Republic of Tanzania increased condom use among truck drivers from 54% to 74% and another programme in Mexico increased condom use among sex workers from 50% to 80%.

Condom promotion and provision

Laboratory, clinical and epidemiological studies prove that condoms are an effective and practical way of reducing transmission of STD and HIV. There are 4 complementary approaches to condom promotion: private sales, public distribution (e.g. in family planning clinics), social marketing, and community-based distribution.

Condom social marketing, which borrows from market research, marketing techniques and communication research, is an effective approach to promoting the sale of subsidized condoms through existing commercial and informal channels. For example, sales in Zaire increased from 100 000 in 1987 to over 18 million in 1991. Overall in Africa, condom social marketing sales soared from under 1 million in 1988 to 77 million in 1993.

Community-based distribution usually involves free distribution of condoms to socially or epidemiologically vulnerable groups, women as well as men. In Thailand from 1992 to 1993, the government supplied condoms to the sex industry and initiated sanctions against sex establishments (not sex workers) where condoms were not consistently used. From 1989 to 1993, condom use among sex workers increased from 14% to 94% and monthly STD incidence declined from between 15% and 25% to between 0.3% and 0.5%. Between 1989 and 1993, reported STDs among men declined by four-fifths nationwide.

Communication and services for safer drug-related behaviour

The harm-reduction options that need to be communicated to injecting drug users range from stopping drug use to switching to safer forms (e.g. smoking), to injection with sterile or cleaned equipment only. The accompanying services include detoxification programmes, outreach, and needle exchange or other forms of access to clean equipment. A recent study presents strong confirmation that HIV epidemics in injecting drug users can be prevented by: (i) launching HIV prevention efforts early, before 5% of drug injectors become infected; (ii) providing community outreach to communicate about safer behaviour and build trust between users and health care workers; (iii) ensuring legal access to sterile injection equipment. Of the 22 cities studied, only the five cities that used all three approaches still have infection levels under 5% in their drug-injecting population. This is a good example of a supportive environment. In contrast, repressive measures such as jail sentences or forcible isolation will drive users away from harm-reduction programmes and hamper efforts to keep them and their sex partners free of infection.

STD prevention and care

A study in Zaire provided STD care, condoms and one-on-one education to 531 women. Over 3 years, HIV incidence declined from almost 12 per 100 woman years in the first six months to under 5 per 100 woman years in the last six months, demonstrating how much impact comprehensive STD services can have on HIV transmission. An effective STD prevention and care programme should include safer sex promotion in the general population, encouragement to seek care quickly if an STD is suspected, treatment for symptomatic individuals, detection of syphilis in pregnant women, and prophylaxis for neonatal eye infection.

Barriers to more effective HIV prevention

If effective prevention approaches exist, why are more than 6000 people a day still becoming infected with HIV? The reasons range all the way from human rights infringements to political reluctance to engage the epidemic with the frankness and decisiveness needed.

Unsupportive environment

HIV spreads along the fault-lines of society, pointing up the myriad social and economic problems that remain unsolved. In the broadest sense, therefore, building a supportive environment requires measures to: improve the status of women; protect the human rights of individuals with HIV and socially marginalized groups; improve the stability of families by reducing displacement and homelessness; and increase access to health, social and legal services. In the context of HIV/AIDS, what matters is to implement simultaneously approaches that are capable of yielding short-term results (e.g. collective action by sex workers to raise their charges so that they can afford to refuse clients unwilling to wear a condom) alongside approaches which will bear dividends only over the long term (e.g. improving women's legal status, educational access and income-generating potential).

Reluctance to accept need for harm reduction

Some believe that safer-sex and other harm-reduction messages condone and even encourage transgressions from the moral code. They would prefer to encourage only abstinence from drugs, sexual abstinence and fidelity. However, there is no doubt that a proportion of people cannot or will not restrict themselves to these options. Giving people the full range of safer behaviour options can only be described as a life-saving measure in the AIDS era.

Reluctance to acknowledge risk behaviours

A related problem is failure to acknowledge the existence within a country of certain lifestyles or behaviours, such as drug injecting, sexual intercourse among young people, or homosexual or bisexual practices. This creates barriers to the introduction of the kinds of prevention programmes that have slowed the spread of HIV in other countries.

Inadequate appreciation of the community's central role

The importance of community leadership, participation and activism has been amply demonstrated, for example by the pioneering prevention efforts of the gay community in developed countries. Not all countries have risen to the challenge of providing helpful outside support to their communities.

Delayed response

The earlier a society responds to AIDS, the more cost-effective its efforts. Very early prevention programmes can concentrate their resources on the empowerment and protection of groups at highest risk of HIV, preventing an initial explosion of infections among these groups and thus averting the subsequent increase in transmission in the larger community. Notwithstanding the benefits of early action, many countries delay vital programmes, losing opportunities that will never return.

Piecemeal and small-scale prevention approaches

Few countries have programmes which concurrently combine communication to promote safer sexual behaviour, condom promotion, and STD prevention and care. Yet mathematical models suggest that combining partner reduction, condom use and STD treatment magnifies their individual effects. This synergism is not yet exploited to the full in HIV prevention strategies. Even successful local and community initiatives remain limited to specific communities or geographic areas, instead of being transformed into comprehensive, large-scale, nationwide programmes. Relatively few countries have revamped their legislation, policies and enforcement practices to provide a supportive environment for HIV prevention.

Misguided prevention approaches

The evidence indicates that compulsory HIV testing is neither required nor helpful for effective HIV prevention. Being a violation of human rights, it can even have a chilling effect on prevention programmes. Yet many societies continue to advocate this inappropriate approach.

Insufficient funding

WHO estimates that US$2.5 billion annually could fund basic prevention programmes in developing countries and thereby avert 10 million infections by the year 2000. While this is 10 times more than is spent today, it is not a prohibitive amount. For example, basic prevention in Asia would cost approximately US$1.5 billion annually, which represents 0.03% of Asia's economic output. However, the lowest-income countries are unable to mount even this effort without external assistance.

Inadequate political commitment

A few countries have shown decisive political commitment in terms of acknowledging the extent of real HIV/STD risk, endorsing the need for harm reduction, and allocating sufficient national resources to prevention, but such commitment is needed urgently from all.

Priorities for action

Enough is known about HIV prevention approaches to save millions of lives in the coming years. The Paris AIDS Summit could endorse the following principles and national priorities and launch the global initiatives outlined below.

Basic principles

All people have the right to the enjoyment of the highest attainable standard of physical and mental health, including the right to be able to protect themselves from AIDS and other STDs. Therefore:

Priorities for national action

To ensure rapid, decentralized countrywide implementation of effective HIV/STD prevention programmes, governments should:

To facilitate this access, governments should:

Research programmes on sexuality are needed to:

Governments should initiate or strengthen nationwide school AIDS education programmes emphasizing:

1. Global initiative on greater involvement by people living with HIV/AIDS

The Paris AIDS Summit could launch an initiative to help ensure the success of HIV prevention through greater participation by people living with and affected by HIV/AIDS, who are an integral part of the response to the epidemic.

To date, the methods used for preventing HIV transmission have not succeeded in bringing the epidemic under control. Communities around the world, who are affected to varying degrees, are seeking new and effective approaches to the fight against HIV.

In 1994, more than ever, the world needs a fresh approach to curtailing the spread of HIV. The Paris AIDS Summit is convinced that increased participation in prevention by people with a close personal connection to the epidemic is the approach that has been missing the approach that can bring success within reach.

Through their commitment during the past decade, based on their unique life experience, people living with HIV/AIDS and their networks and organizations have given a human face to HIV/AIDS. By taking an active part in prevention they help safeguard the principle of non-exclusion in these programmes, increasing their effectiveness. And because they share the same values as their communities of origin, they have special credibility in helping create a favourable climate for attitudinal and behavioural changes. As more PWAs have become involved in prevention, their visibility has encouraged others living with the virus to be open about their infection status, making it possible for them in turn to contribute openly to prevention, care and support programmes.

Given the importance of strengthening and accelerating this involvement, the Paris AIDS Summit could call on WHO (in anticipation of the joint and cosponsored UN programme on HIV/AIDS) to develop a new global initiative aimed at helping people whose lives have been touched by HIV/AIDS to be open about their connection with the epidemic, join together at national level, and work together publicly to stop the spread of HIV and alleviate the impact of HIV/AIDS.

The global initiative could take the form of a federation of national organizations/groups working openly in the planning and implementation of prevention, care and support, and comprising people living with HIV/AIDS and others directly affected, such as their mothers, fathers, spouses, partners and children. In countries with no public organization of this kind, the federation could work directly with individuals with the aim of enabling them to establish one, perhaps by first creating a confidential support group. The federation could thus:

2. Global mobilization of youth on HIV/AIDS

(An initiative similar to this one was proposed by the Strategic Meeting on Vulnerability to HIV/AIDS)

In an era when half of all HIV infections occur in people under 25 years old and when the world's youth faces an uncertain future, a worldwide initiative on HIV/AIDS and youth would focus on a message of hope, solidarity and prevention.

This initiative would mobilize and organize an urgent and worldwide response, building on leadership by youth and working within local and international youth cultures.

This initiative could operate through collaborative efforts between youth organizations, communities, NGOs, governments, international groups, the international sports community, and the private sector, particularly the media, entertainment and publishing industries.

The initiative would be a sustained effort that uses all available resources and opportunities, such as sports events, concerts and other media events.

It would:

The Summit could set this initiative in motion in partnership with youth organizations, media representatives and communications experts.

Report of the Strategic Meeting on Vulnerability to HIV/AIDS

Geneva, 5-7 October 1994

Introduction and background

The epidemic of HIV infection has spread worldwide, ignoring national boundaries as well as divisions of age, race, gender, class, sexual orientation, religion and culture. The cumulative number of HIV infections to date now exceeds 17 million, and approximately 4 million adults and children are estimated to have developed AIDS.

The consequences of AIDS have been enormous. In many countries AIDS has had a severe impact at all levels.

Situation Analysis

AIDS affects mainly young adults, who are typically among the most economically productive age groups in society. A high AIDS prevalence threatens the economy, particularly sectors that are highly labour intensive or have large numbers of mobile or migratory workers, such as agriculture, transportation and mining. The costs of lost production due to AIDS have been estimated to be 10 to 20 times greater than direct medical care costs.

Particularly in some developing countries, AIDS has added a heavy burden to already weakened health and social systems. Many communities have been faced with a devastating gap between needs for care and available services, compounded by the increased poverty that follows in the epidemic's wake.

At the household and family level, AIDS has caused great distress and hardship. Because AIDS generally strikes those responsible for supporting the young and the elderly, it not only brings emotional turmoil but threatens the economic survival of households.

The consequences of HIV/AIDS are most severe, however, for the people infected. Besides dealing with the medical, emotional and psychological consequences of a fatal infection, people with HIV/AIDS have to bear the economic burden, and many are unable to afford the high costs of medical care. Most also face stigma and isolation resulting from societal prejudice, ignorance, fear and denial.

Vulnerability to HIV infection and AIDS

Vulnerability to HIV/AIDS refers to: (1) an increased likelihood of exposure to or infection with HIV, and/or (2) an increased likelihood of suffering needless consequences of HIV infection and AIDS.

A wide range of economic, cultural, behavioural, political, demographic and biological factors can create one kind of vulnerability or the other. Some factors, such as poverty, discrimination, and lack of access to information or to health services, make people vulnerable on both counts.

In all countries there exist individuals, families, communities or population groups with particularly great vulnerability. For example, poverty can lead women and men into selling sex and thus increase their risk of exposure to HIV infection. Exclusion and social deprivation can be linked to HIV risks through unsafe drug use. Similarly, discrimination and lack of legal protection can result in HIV-infected people or their families losing their home and livelihood.

HIV/AIDS-related discrimination, human rights and ethics

Discrimination, stigmatization and the related loss of human rights increase vulnerability to HIV infection and AIDS in several ways.

For one thing, people who are socio-economically or legally disadvantaged or otherwise deprived of their human rights have little or no access to HIV/STD prevention programmes or other health care services. They may also have little or no power to negotiate safer sex or other protective behaviour with their partners.

Once infected, individuals and those associated with them (including their children, spouses and other family members, friends and associates) face further discrimination, denial of human rights and stigmatization. The stigma extends even to groups suspected of infection, such as minorities, migrant workers, sex workers, men who have sex with men, and injecting drug users. People with known or presumed infection are sometimes coerced into mandatory HIV testing, harassed, arrested, segregated, imprisoned or deported.

Discrimination, human rights abuses and stigmatization can originate from governments, private organizations and institutions, and from communities, families and individuals. Among the rights that may be denied or affected are the rights to life, health, liberty and security of person, freedom of movement, privacy, work, education, social security, assistance and welfare, and the right to marry and found a family. Furthermore, medical ethics with regard to confidentiality, duty to treat, and research involving human subjects may be violated.

Although the discrimination and stigmatization surrounding HIV/AIDS is widely acknowledged, there are relatively few data on the extent of the problem or the factors contributing to it. Furthermore, although there is a well-developed set of human rights standards at the international and national levels, not enough consideration has been given to how these specifically apply in the area of HIV/AIDS.

In some countries, special policies and interventions have been put into place to prevent discrimination and protect the rights of people affected by HIV/AIDS. However, in many other countries this has not occurred. Useful guidance for policy-makers concerning these issues still needs to be developed.

Special vulnerability of women

Throughout the world, women are increasingly being infected with HIV. In sub-Saharan Africa, for example, infected women are thought to outnumber infected men by 6 to 5. It is estimated that by the year 2000 more than 13 million women will have been infected with HIV, of whom more than 4 million will have died of AIDS. As more women become infected, there is a concomitant increase in infections among children as a result of mother-to-child transmission.

A number of gender-related risk factors increase women's exposure to HIV/STDs and/or impair their ability to protect themselves from infection:

In many societies, women because of their low status tend to have less access to HIV/STD prevention programmes and to health care including STD services.

In addition to running a high risk of infection, women suffer severe consequences of HIV/AIDS. In most households, women (and adolescent girls) are the family care-takers. When serious illness strikes the home, this burden becomes extremely heavy. It is exacerbated when a woman is herself HIV-infected and when the household cannot afford health care or get support from the community. Added to the emotional stress of her own illness (and perhaps that of her husband or partner who is likely to fall ill first and any HIV-infected babies), an infected woman faces the distressing task of making arrangements for the children she will leave behind, often while confronted with social stigma and rejection. If her partner is too ill to provide for the family, the woman is forced to take on this role as well.

As the woman's situation worsens so does the situation of her children, who may suffer emotional and physical neglect. In many societies, women either have no property rights or lose them when their husband dies. The widow's loss of land, housing and goods, inheritance, pension, support or even custody of her children, in the absence of social security or legal protection, exposes the surviving family to even greater hardships.

To address these vulnerabilities properly in HIV/AIDS prevention and care programmes takes strong political will. We also need a deeper understanding of the way in which the various social, economic, legal, cultural and other factors increase the risks of women (including subgroups such as young women, women living in extreme poverty, etc.) and how to mitigate those effects.

Special vulnerability of children affected by HIV/AIDS

AIDS can affect children in many different ways. Children with HIV infection or AIDS suffer the most direct consequences. Those who are not infected themselves but whose parents are sick or have died of AIDS are also severely affected. WHO has estimated that as of late 1993 about 2.5 million children had lost one or both parents to AIDS, 90% of them in Africa. AIDS likewise affects the lives of children whose siblings, relatives or friends have the disease or have died, and those who share their homes with children orphaned by AIDS from another family. Then there are the children at risk of infection, such as homeless and street children struggling to survive on the margins of society.

Such children face five broad categories of problems: physical and emotional health, food, shelter, education and training, and legal issues related to inheritance and custody.

Perhaps nothing is as traumatic for a child as the illness and death of a parent. The loss of consistent nurture can have serious developmental effects. A parent's illness and death reduces the family's ability to provide for its needs (to produce crops or generate income), thus increasing their poverty; increased poverty may threaten food security, multiply health risks and reduce ability to obtain health services. Lost income or inability to repair and maintain the home can result in loss of shelter. Resources may be lacking for children to continue with school or formal training; and traditional skills may not be passed on. In instances where land, home and possessions are lost, the children may be left homeless and without legal protection.

For the more than 100 million street children around the world, the problems described are even more serious. Their precarious existence makes them additionally vulnerable to HIV infection and AIDS. However, this threat is much less immediate than other basic realities of their everyday lives. The pandemic is also pushing increasing numbers of orphans onto the street with no other way to survive than to do informal work, beg, or steal. Those living on the street without family or community support are at extreme risk; they may be victims of forced labour or of sexual exploitation through prostitution or sexual abuse. Many children do not get access to information, education or health services (including STD services), because of cultural, religious, legal or other barriers.

Enormous child welfare needs are thus being created by the HIV/AIDS epidemic. There are no ideal responses to the needs of children whose parents have died, only better and worse ways to compensate for what has been lost and to promote recovery. Similarly, there are no easy ways to protect the millions of street children around the world from HIV. Numerous governmental, non-governmental, religious and other organizations have undertaken important efforts and have accumulated extensive experience. In view of the growing need, it is vital to strengthen support for existing programmes, improve networking between them, and develop new initiatives.

Populations with special vulnerability to HIV/AIDS

In most societies, individuals, groups or communities who are most vulnerable to HIV/AIDS also tend to be the same ones as those who are the least politically or socially accepted because of factors such as their sexual orientation, the possibly illegal nature of their practices, cultural or religious differences from the rest of society, low social status and powerlessness.

In addition to children and women, populations at increased risk include:

Special efforts need to be made to reach out to these population groups (and in the case of sex workers, to their clients as well) with prevention information and services. Unfortunately, this is typically a low priority for national governments, who may be tempted to apply coercive measures instead. Apart from being an infringement of human rights, coercion is counterproductive because it merely drives people underground, away from the information and support they need to protect themselves and others from HIV infection.

These same populations are also specially vulnerable to the consequences of HIV/AIDS because they tend to be infected early in the epidemic, are denied access to care and social support owing to their low status and the possibly illicit nature of their activities, and are disadvantaged to begin with.

Priorities for action

Although much remains to be learned about reducing people's vulnerability to HIV/AIDS, there are approaches of proven efficacy many of which require little financial investment. The Paris AIDS Summit could endorse the following principles and national priorities and launch the global initiatives outlined below.

Basic principles

Priorities for national action

  1. Governments should establish laws and policies providing for testing only with informed consent, maintenance of confidentiality, and pre-test and post-test counselling, and ensure remedies in the event these are violated. Existing laws and policies inconsistent with these principles should be repealed.
  2. Governments should take concrete action to protect the human rights of people living with or affected by HIV/AIDS and thereby help enable them to disclose their status should they wish to. This will help ensure their full involvement in planning and delivering prevention, care and support.
  3. Governments should take urgent steps to improve the health, educational, legal and economic prospects of women for the sake of equity and development, and to reduce their vulnerability to HIV/AIDS. They should further ensure that the information and services available through HIV/AIDS programmes fully address the specific needs of women, with special attention to young women.

To alleviate the consequences of HIV/AIDS for women, children, youth and families, governments should take immediate action at national and community levels to:

Governments should promote an equal and safe relationship between men and women through education, legislation, information and other measures intended to:

Global initiatives

Global initiative on human rights, law and ethics

Discrimination and stigmatization violate the human rights and dignity of persons affected by HIV/AIDS, drive people away from prevention and care programmes, facilitate HIV transmission, and increase the personal, social and economic impact of the epidemic. To overcome these requires leadership, advocacy and action, grounded in the experience of individuals and communities.

The Paris Summit could endorse:

Global initiative on reducing women's vulnerability to HIV/AIDS

Worldwide, women account for an ever-greater proportion of total HIV infections. The Paris Summit could support global mobilization on issues of women's vulnerability to the risks and consequences of HIV/AIDS. This could include the creation of a high-level policy task force comprised of individuals drawn from the following groups: women leaders, experts on women and HIV/AIDS, non-governmental organizations, governments, and United Nations organizations. This task force would be independent and have a secretariat in the United Nations system, possibly in the joint and cosponsored UN programme on HIV/AIDS.

The task force could advocate the urgency of and advise on (a) reducing women's vulnerability to HIV/AIDS, (b) promoting women's full participation in policy and strategy formulation, and (c) implementing effective approaches. The task force could also promote research focusing on reducing women's vulnerability to HIV/AIDS across a range of cultural settings.

Global initiative on children, youth and HIV/AIDS

The vulnerability of children and youth to the risks and consequences of HIV/AIDS is a key issue, particularly in developing countries. Thus children and youth have a strong need for HIV prevention, support, and all other rights mandated by the Convention on the Rights of the Child. The Paris Summit could endorse the creation of a global initiative on children, youth and HIV/AIDS.

The main aims of this initiative would be:

  1. To create a network of organizations that would strengthen local responses to the needs of affected children, including orphans particularly responses that do not uproot children from a family and community environment. The network could facilitate the sharing of information and experience, provide technical support and training for project development and offer support to innovative programmes.
  2. To promote the global mobilization of youth for HIV/AIDS prevention, and the integration of youth into the process of programme development and implementation. The Paris Summit could support a collaborative effort between youth organizations, non-governmental organizations, governments and the private sector, particularly the media, entertainment and publishing industries, aimed at strengthening youth involvement and conveying a message of prevention and solidarity.

An initiative similar to part (B) of this initiative was proposed by the Strategic Meeting on Prevention (HIV/AIDS)

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