ASEAN REGIONAL WORKSHOP ON HIV/AIDS : ADDRESSING STIGMA DISCRIMINATION

25th – 28th April 2003
Melaka, Malaysia.

Executing Agency:
World Youth Foundation(WYF)

In Cooperation with:
The Government of Malaysia
Ministry of Youth & Sports Malaysia
Ministry of Health, Malaysia
UNAIDS Malaysia
United Nations Development Programme, Malaysia
World Assembly of Youth

RATIONALE

Of about 1.2 billion young people worldwide (between the ages of 10 and 24), 11.8 million are currently estimated to be living with HIV/AIDS Every year it is estimated that over 2.6 million young people contract the virus through sexual route or through injecting drug use. In recent years, over half of all new HIV infections – about 7000 every day – are among youth aged 15-24 the same age group that also has the highest rates (111 million cases in this group every year) of sexually transmitted infections (STIs) . That is why young people are, and must be, at the center of action on HIV/AIDS.

Silence, taboos and myths often surround HIV/AIDS because it is associated with private and intimate behaviors. In this context, many factors may restrict young people’s full enjoyment of human rights and leave them particularly exposed to HIV/infection or vulnerable to needles suffering, if they are infected.

Asia is the home of 63 per cent of the world’s youth population. A majority of these adolescents and youth do not have access to information on the manifestation, causes, transmission, prevention and management of STDs/STIs including HIV/AIDS.
In 2001, 600000 newly infected were children and 500000 had died. Approximately half of all people who acquire HIV become infected before they turn 25. As the majority of people living with HIV/AIDS are living in the developing world, the majority of children and young people infected are living in the developing world. If HIV prevention in this huge population fails, developing countries will have to face the staggering human and economic costs of vast numbers of adult AIDS cases.

Increasingly, young people are being appreciated as a force for changing the course of the epidemic. They are responsive to HIV prevention programmes and are effective promoters of HIV prevention action. Investing in HIV prevention and networking among young people is likely to contribute significantly to a more sustainable response to HIV/AIDS.

Why focus on discrimination and stigmatization? 
Stigma at societal level can lead to silence and denial – a refusal to acknowledge and deal with HIV/AIDS. This reinforces ignorance and fear, allowing prejudice to thrive, risky behavior to go unchanged and uncaring behavior to go unchallenged. It also ensures that people living with HIV/AIDS and their families remain silenced and sidelined.

HIV is heavily stigmatized in most societies, even though this behaviour is clearly irrational. People who are infected are rejected and scorned because social prejudice against the disease runs so deep. In some cases, people are stigmatized simply because of suspected association with HIV, or vulnerable individuals.

Stigma and discrimination are of concern to AIDS programmes for two main reasons. First, because they can make life unbearable for those living with the disease. Secondly, because they affect prevention and care efforts. People who have been exposed to HIV through their behaviour or that of their partner may be unwilling to be tested or to change their behaviour in any way for fear of being suspected of being HIV-infected.

If they are indeed infected, they may continue to spread the virus and will not accept to access adequate care. There are many ways that stigma can undermine prevention and care efforts. HIV-positive women may know that breast-feeding carries a risk of transmitting the virus to her infant, for example. But she my refuse alternative feeding methods (even when they re provided at no cost) because bottle-feeding will brand her as HIV-infected and carry the risk that she will be thrown out of the family.
Where stigma is high, people may avoid an HIV test that could provide an entry point for necessary care and support. Active discrimination has consequences for prevention too. If a person is fired from their job because they are HIV-infected, they may have to resort to survival strategies such as selling sex, which further fuels the epidemic.

Addressing stigma and discrimination is a commitment made at the United Nations General Assembly on HIV/AIDS in June 2001.

“Stigma, silence, discrimination and denial, as well as lack of confidentiality, undermine prevention, care and treatment efforts and increase the impact of the epidemic on individuals, families, communities and nations (Paragraph 13).

“By (the year) 2003, (nations should) ensure the development and implementation of multi-sectoral national strategies and financing plans for combating HIV/AIDS that address the epidemic in forthright terms; confront stigma, silence and denial; address gender and age based dimensions of the epidemic; (and) eliminate discrimination and marginalization’ (Paragraph 37)

“By (the year) 2003, (nations should) enact, strengthen or enforce, as appropriate, legislation, regulations and other measures to eliminate all forms of discrimination against, and to ensure the full enjoyment of all human rights and fundamental freedom by people living with HIV/AIDS and members of vulnerable groups, in particular to ensure their access to, inter-alia, education, inheritance, employment, health care, social and health services, prevention , support and treatment, information and legal protection, while respecting their privacy and confidentiality; and develop strategies to combat stigma and social exclusion with the epidemic’ (Paragraph 58).

Congratulatory Messages: Datuk Seri Mohd Ali Rustam

Rt Hon Datuk Seri Mohd Ali Rustam
Chief Minister Melaka
Chairman, World Youth Foundation
Dear ParticipantsI wish to extend a very warm “Selamat Datang” to all participants of this ASEAN Regional Workshop on HIV/AIDS: Addressing Stigma and Discrimination. AIDS, which knows no borders, has been the cause of many whole families being broken, children becoming orphans. AIDS kills males, females, rich, old and children of all races from all communities without conscience and remorse. It is unfortunate that young people represent half of the new HIV infections. This is an unacceptable situation that must be reversed. As the majority of young sufferers of HIV/AIDS are young people in the developing countries, it is important that prevention efforts be more focused on them. Young people are responsive to HIV prevention programmes and are effective promoters of HIV prevention action. Stigma and discrimination has seen many people who are living with the disease shying away from talking about the disease and seeking treatment. This is due to the fear that society at large has not been ready to accept them. We must then ask ourselves what is it that we can do to tackle this ugly scenario and address the missing link. If we don’t then there is every possibility of seeing a new generation being wipe out. This workshop will address three programme areas under the ASEAN Work Programme on HIV/AIDS II (2002-2005) i.e. positive environment, education programme, life-skills training for youth and strengthening regional coordination among agencies working on youth in the ASEAN region. It is pertinent that we include young people in every sphere of the decision making process. The outcome of this workshop is setting up of the ASEAN Regional Youth Network for future sharing in the areas of information sharing, cooperation and collaboration on issues concerning HIV/AIDS. The setting up of this network is an important step towards promoting young people’s voice and I wish you every success.
Thank you.Congratulatory Messages: Datuk Hishamuddin Tun Hussein

Datuk Hishammudin Tun Hussein
Minister of Youth & Sports Malaysia
I would like to this opportunity to welcome all delegates of this workshop to warm and charming Malaysia. HIV/AIDS is the most serious epidemic confronting the world of late. Besides having devastating impact on society, HIV has also been a major problem plaguing young people.
In most Asian countries HIV infection is highest among young people. Out of the estimated 1.7 billion young people worldwide (between the ages of 10 and 24), 11.8 million are currently estimated to be living with HIV/AIDS. Each year it is estimated that over 2.6 million young people contract the virus through unsafe sexual contact or through drug use. In recent years over half of all new HIV infections – about 7,000 every day – are among youth aged 15-24, the same age group that also has the highest rate (11 million).
There is ABOUT 50,000 people living with HIV/AIDS in Malaysia today and a proportion of this includes young people. Stigma with respect to HIV/AIDS comes mostly from hostility about the disease. The lack of understanding of the disease, prejudice towards different races, gender equality. Fears about sexuality and value-based judgments are some of the triggers that provoke misunderstanding of the disease. As such people living with HIV/AIDS tend to be side stabbed in every sphere of life.
It therefore gives me great pleasure to know that there has been so much enthusiasm on the part of young people not only from the ASEAN region but from other regions as well to participate in this workshop. This workshop, as I understand constitutes a significant step of establishing a regional network for young people and stakeholders to remain connected through an electronic forum which will be modeled under existing similar networks.
I would therefore take this opportunity to thank the organizers the World Youth Foundation, the Ministry of Health Malaysia, the ASEAN Secretariat, Joint United Nations Programme on HIV/AIDS (UNAIDS) Malaysia, World Assembly of Youth and the Malaysian AIDS Council for their collaboration in organizing this workshop.
Thank you.Congratulatory Messages: Datuk Dr Chua Jui Meng

Dato’ Chua Jui Meng
Minister of Health Malaysia

I would like to thank the organizers for organizing this ASEAN Regional Workshop on HIV/AIDS: Addressing Stigma and Discrimination.

Live and let Live is the 2002 -2003 World AIDS Campaign slogan. The campaign challenges us to ensure that all people, with or without HIV, can realize their human rights and live in dignity.

Stigma in relation to HIV/AIDS comes mostly from fear and hostility about the disease or the population most affected by the disease. When stigmatization turns into action, it becomes discrimination. HIV related stigmatization and discrimination build on pre-existing stereotypes and inequalities come from older practices and beliefs towards others, specifically towards people of a different sexual orientation, gender, race or social status.

I welcome the fact that as part of our efforts to involve young people in the fight against this deadly disease the World Youth Foundation is providing an important platform by bringing together youth representatives from the ASEAN region to discuss some very important objectives. Young people should be provided with a forum of networking, sharing and initiating new ideas to reduce the impact of HIV/AIDS among them and should be encouraged or empowered to do so.

The important objective – to initiate a regional youth network is most welcomed and I wish all of you every success in realizing this very important milestone.

Welcome Messages: Datuk Seri Mohd Ali Rustam

Rt. Hon Datuk Seri Mohd Ali Rustam
Chairman World Youth Foundation
Distinguished Guest and Participants
       It is great privilege and an honor to wish all of you the traditional Malay greeting of “Selamat Datang” and a warm welcome to the historic city Melaka for this ASEAN Regional Workshop on HIV/AIDS: – Stigma and Discrimination –
       It is good to see that the young, who represent our future, are fully aware and concern with regard to HIV/AIDS related issues. From what I have gathered, there are some 111 local and 79 foreign participants taking part in the workshops lined up for the three-day program.
       Although the target groups are young people from the ASEAN region, the gathering here today has attracted many participants from non-ASEAN countries such as Nepal, India, Sri Lanka, Pakistan, Ghana, Bangladesh, Ethiopia and Nigeria.
       Our meeting here comes at a very challenging time as the world is facing the after effects of US-led war on Iraq and the unfortunate break of the SARS viral disease. However, despite these challenges, the Secretariat of the World Youth Foundation has managed to organize this gathering with success.
Ladies and Gentlemen
       The workshop among others, will deal with topics on what young people can do to counter stigmatization and discrimination of HIV/AIDS while helping the public understand the socio-economic impacts behind such perceptions.
       Not wanting to sound gender-bias, one of the main the focus of this workshop will be on young men. They are primarily the leaders, opinion formers and decision makers in society and as such they can have a great impact on reducing not only their own vulnerability to infection but also that of others.
       I am sure the topics of discussion will generate much interest, as a majority of participants gathered for this workshop are young men themselves. Ladies and Gentlemen
       AIDS was discovered in 1981 in America and the disease has taken its toll on our society on a global scale. No one has been spared the suffering brought about by the disease and it has affected the governments, public and private sectors including non-government organizations.
       AIDS tells is a very grim story. When AIDS strikes, it not only destroys a victim physically but also mentally and emotionally. Not only does a victim have to deal with life threatening illness, but he or she will have to face stigma, discrimination and the humiliation that can be very unbearable.
        That is the reason why we are here today. The workshops that are to be held will give the opportunity for us to listen to stories of those who suffer such discrimination and stigma. It will give us the chance of hearing their silent cries of pain, suffering and how their world is crushed upon them.
       We ask ourselves what are the factors that contribute to the spread of HIV? The answers are many and range from the lack of guidance and knowledge, enculturation, gender inequality, poverty, urbanizations and many more.
       Also crucial is the stigma and discrimination of PLWHA or “people living with AIDS” as these is one of the biggest barriers to prevention and treatment. We, the government, NGOs and civil society, are stakeholders and we need to be more proactive in addressing the issue that drives this global epidemic.
       Stigma and discrimination of any kind is largely due to the fear of the unknown. Likewise, this fear also affects those living with HIV/AIDS. It is a fear that society at large is not been ready to accept such victims. We must then ask ourselves what can be done to tackle this ugly scenario and address the missing link.
       If we don’t, I fear that we might be seeing a new generation being wiped out by the apathy towards those who suffer in silence. We must not let this happen, as they are our hope, our future.
Ladies and Gentlemen      When I say that the young represent our future, I mean it literally. Asia is home of 63 percent of young people out of the entire global population of over 6 billion inhabitants.
       The first AIDS case in Malaysia was diagnosed in December 1986 and the number of infections has risen since then. From 1990 to 2000, the annual reported cases have increased from 778 to over 5000 a year. This is alarming.
       Though there appears to be high awareness about HIV and AIDS among Malaysians, this awareness does not translate into a deep and complex understanding of the disease.
       Hampering positive proactive measures to prevent the spread of the diseases are factors such as the lack of openness when discussing issues such as sexuality, practice of traditional community values and behavior reflected in gender inequalities.Ladies and Gentlemen
       I look forward and welcome the idea of laying the groundwork for the setting up of an ASEAN Regional Youth E-Network. It is my hope, that once set-up, the ASEAN Secretariat and the UNDP will play not only a facilitating role but a lead role in funding the network and organizing follow-up meetings among the selected representatives.
       Before I conclude, I would like to thank the notable speakers who will be sharing their time and inputs with all of you, the Ministry of Youth and Sports, Economic Planning Unit of the Prime Minister’s Department and the Ministry of Health Malaysia for the generous sponsorship. My thanks also goes to the Foundation’s Secretariat, the ASEAN Secretariat, Panos Institute United Kingdom, UNAIDS Malaysia and the Malaysian AIDS Council for their help in making this event a reality.
       Last but not the least I would like to thank you – all participants for being here today. I hope you will enjoy your stay here in historic Melaka and have a fruitful discussion.
      Despite the busy schedules, I hope that you will find some time to savor and enjoy the many charms and sights that Melaka has to offer. As they say, to “Visit Historic Melaka Means Visit Malaysia” and as such you will surely take home fond memories of our historic city.Thank YouOpening Messages: Datuk Dr Chua Jui Meng

Dato’ Chua Jui Meng
Minister of Health Malaysia

Good morning to all of you.

Allow me to congratulate all the co-organizers of this workshop for providing, under the auspices of the World Youth Foundation, this important forum for young people to meet, discuss and share ideas about possible ways of preventing, controlling and curbing the HIV/AIDS menace. My personal appreciation goes to none other than the Chairman of the World Youth Foundation, the Rt. Hon . Datuk Seri Mohd Ali Rustam, for his energy and dynamism in organizing and spearheading this workshop. For the information of our participants, the Rt. Hon . Datuk Seri Mohd Ali Rustam is also the Chief Minister of Melaka, the historical state where this programme is now being held. To YAB Datuk Seri, please accept my sincere thanks and allow me express my gratitude in a poem adapted from a Malay pantun:

Sweet pretty maiden throws a net,
Straight to the sea flies a hornet;
Your kindness Datuk we will not forget,
Melaka where our hearts are always set.

To our speakers and participants from abroad, let me bid you a warm welcome, “ Selamat Datang ”, to Malaysia. I hope you will enjoy your stay with us.

Ladies and Gentlemen,

As we all aware, HIV/AIDS is a disastrous disease that has hit mankind. All over the world, millions have fallen victims to this scourge – men and women, parents and children, husbands and wives, black and white, rich an poor. HIV/AIDS does not discriminate among its victims.

By the end of December 2002, according to the “AIDS Epidemic Update “,there are close to 42 million people living with HIV/AIDS in the world;3.2 million of them children below the age of 15 years. Among the 38.6 million adults living with HIV/AIDS,49.7% are women. In 2002 itself, 5 million people in the world were newly infected with the virus, and 3.1 million people died from the disease. The overwhelming majority of people living with HIV/AIDS are in the developing countries among people in their most productive years, i.e. among the 15-49 years old.

In Asia and the Pacific, 7.2 million people are now living with HIV/AIDS. The growth of the epidemic in this region, according to UNDAIDS, is largely due to the growing epidemic in China, where a million people are now living with HIV/AIDS.A considerable potential for growth also exists in India where almost 4 million people are living with HIV/AIDS.

In Malaysia, the HIV/AIDS epidemic is 17 years old. Up to December 2002, a total of 51,256 HIV cases have been reported, out of which 7,218 are AAIDS cases and 5,424 had died. There are therefore close to 46,000 people living with HIV/AIDS in the country presently. By gender, men still represent the majority of the reported HIV cases (94%). by age group,82% of the cases are people in their prime of life, between 13 to 39 years of age.

Presently, most of our reported cases (76.3%) have been among injecting drug users. But what is worrying to us is that the heterosexual route of transmission has increased from 14% of reported cases in 2001 to 17.5% in 2002.The number of infected women has also increased from 7.8% in 2001 to 9.0% in 2002.Only 20% of our HIV positive women were infected through injecting drugs, while 64% acquired the virus through unsafe, heterosexual relationships. This underscores the special risk that women face because of men’s reluctance to use condoms and women’s lack of power to determine their own sexual relationships and negotiate for safe sex.

Ladies and gentlemen,

In the absence of a cure or vaccine, the burden from HIV/AIDS poses a major socio-economic and development threat to most countries, with implications far beyond the health sector. That is why today many people are saying that AIDS is a social disease rather than a clinical one. Although this statement may sound misleading, it is important for us to seriously ponder about it.

The serious impacts of HIV/AIDS in the worst-affected countries have been well-documented. These include a dramatic reduction in productivity and human capital due to debility and decimation of the workforce; exorbitant healthcare and social welfare expenditures; degradation of education due to loss of school teachers and reduced funding; deprivation and reduced survival among children due to loss of family breadwinners and carers; disintegration of traditional support systems and social safety nets; and, of course, stigma and discrimination against HIV/AIDS victims and their families.

I have said in my message to you in your programme book, stigma in relation to HIV/AIDS comes mostly from ignorance, fear and hostility about the disease or the population affected by the disease. When stigmatization turns into action, it becomes discrimination. In many parts of the world, stigmatization and discrimination against HIV/AIDS victims are quite widespread, fuelling anxiety and prejudice against the affected people. Affected children are discriminated at schools and hospitals. HIV/AIDS patients are denied social groupings and are ostracized from society. Stigma and discrimination prevent individuals from seeking treatment for IDS or from acknowledging their HIV status publicly. Once again, due to gender norms, HIV-infected women face greater disgrace and rejection than men.

According to the AIDS Epidemic Update of December 2002, “HIV/AIDS-related stigma and discrimination rank among the biggest-and most pervasive-barriers to effective responses to the AIDS epidemic. Stigma and discrimination target and harm those who are least able to enjoy their human rights: the poorest, the least educated, and the most marginalized. In fact, stigma, discrimination, and human rights violations from a vicious cycle, generating, reinforcing and perpetuating each other. The outcome, in a world of AIDS, is life-threatening. Stigma and discrimination increase people’s vulnerability and, by isolating people and depriving them of treatment, care and support, worsen the impact of infection. This is why the 2002-2003 World AIDS Campaign is aimed t spurring worldwide efforts to remove the barriers of stigma and discrimination….with slogan, “Live and let live”.

The World Aids Day 2002 Advocacy Kit has this to say, “Some societies are openly unwilling to accept people with HIV/AIDS. An extreme case was that of South African Guru Dhlamini, who was stoned and beaten to death by neighbours in Durban after she spoke publicly about being HIV positive in 1998.”I understand that in some societies, HIV/AIDS patients are immediately linked to the contemporaries of Lot, whose story is narrated in the bible (Genesis, Chapter 19) and the Holy Qur’an (Surah al-A’raf). People need to understand that not all HIV/AIDS cases are linked to unhealthy sexual activities and drug abuse.

Our Honourable Prime Minister, in one of his writings entitled “Improving Tolerance through Understanding”, wrote,” Sometimes we relate the story of the four blind men and the elephant. We are quite amused with the different impressions of the elephant the four blind men have after they have felt different parts of the animal. In fact, even among those sighted, there can be glaring differences in their perceptions of anything they see”.

In this context, I can say with sufficient justification that the public awareness and health education campaigns carried out tirelessly by our Ministry of Health, other governmental agencies, professional bodies and non -governmental organizations over the years have been largely successful in dispelling ignorance and correcting wrong perceptions of HIV/AIDS. As a result, although HIV/AIDS-related stigma and discrimination are probably universal, no serious acts of stigmatization or discrimination have been reported in this country.

As many of you are probably aware, in Malaysia we have the Prostar Programme, or “Staying Healthy without AIDS Programme”, which trains youths (between the ages of 13 – 25) as facilitators for various educational activities and programs for other youths. The Prostar Programme has been very successful. By 2002, we have recruited more than 50, 000 young facilitators and conducted more than 900 training sessions for them. 740 Prostar clubs have been formed throughout the country and more than 4, 300 educational activities related to HIV/AIDS have been organized, benefiting more than 700, 000 youths.

An evalution that we did in 2000 indicated that Prostar activities have improved the knowledge of, and attitude towards, HIV/AIDS amongst our youths. For example:
While in 1996 only 7% of youths knew that condoms can limit HIV infection, now 80% of youths are aware of it;
In 1996, 75% of youths knew that AIDS can be transmitted through the sharing of needles in drug abuse, now 98% know about it;
In 1996, only 35% knew about mother to child transmission, now the percentage is 97%.

The evaluation also found that Malaysian youths by and large do not stigmatize or discriminate against HIV/AIDS patients, for example, three-quarters of them do not regard AIDS patients as disgusting nor feel any dislike for them. 76% of non-Prostar youths are willing to do volunteer work in support of AAIDS patients while 90% of long-time Prostar members are willing to do so.

In a further attempt to reduce any stigmatization and discrimination against HIV/AIDS victims; indeed, to further improve our support and care for the affected groups, the Ministry of Health has, just 2 weeks ago, given a grant of RM4 million to the Malaysian Aids Council (MAC). This grant will enable the MAC and its 37 NGO-affiliates to expand their services to the various marginalised groups in our fight against the HIV/AIDS menace. Among the activities that would be carried out are outreach programmes, drop-in centres, information and counseling services, referral clinics, social support and even temporary abodes for people living with HIV/AIDS and those at risk of infection. In other words, we are actively reaching out to them through the MAC and its NGO-affiliates. A similar amount of money will be given to the Council each year, over a period of 10 years.

Hopefully, with this additional, new initiative we will improve our coverage of the at-risk groups and effectively curb the growth of the HIV/AIDS scourge in this country. In this context, I must once again commend the World youth Foundation for providing this invaluable platform for participants from the ASEAN region to gather, deliberate and share views about how best to fight the disease and contain its associated stigma and discrimination. Participants will also be able to exchange experiences and best practices in the implementation of youth-friendly HIV/AIDS services in the region.

Ladies and gentlemen,

You are here for a noble purpose and you have a challenging task ahead of you. Let me therefore enthuse you with the inspiring words of Sayiddina ‘Ali ibn Abi Talib, the fourth pious Caliph of the Muslims after Prophet Muhammad: “Do good with the bereaved ones of others so that good is done to your bereaved ones also” (“Sermons, letters and sayings of Iman Ali”,page 551).

On that note, ladies and gentleman, I have pleasure in declaring open the ASEAN Regional Workshop on HIV/AIDS: Addressing Stigma and Discrimination.
Thank you.

Opening Message : Angeline Ackermans

Angeline Ackermans
UNAIDS
Intercountry Programme Development Advisor
For Malaysia, Brunei Darussalam & Singapore

Ladies and Gentlemen

A very good morning,

Please allow me to convey to you the apologies and sincere regret of the UN Resident Coordinator for Malaysia, Singapore and Brunei Darussalam, Ms. Maxine Olson as well as the UNAIDS Theme group Chair in Malaysia, Dr Joel Vanderburg, for not being able to attend this workshop. Due to earlier commitments as well as the sudden ‘emergency’ meeting related to SARS both are unable to attend.

I would like to begin by welcoming you all to this workshop organized by WYF aiming at young people in the ASEAN region and beyond. We in the UN system and in particular UNAIDS are thrilled with the large number of you being here as well as with the commitment shown by the WYF to motivate young people to be active in the response to HIV/AIDS.

Young people should always be focus of attention as they are the group that seems to be most affected and infected in our society but seems to also be a group most unaware of the disease and it’s consequences.

Allow me to say a few words about the Joint United Nations Programme on HIV/AIDS or UNAIDS.

UNAIDS is combining the work of UN organizations (Cosponsors) in the area of HIV/AIDS. These Cosponsors are: UNICEF, UNDP, UNFPA, UNDCP, ILO UNESCO, WHO and the World Bank.

As of 1986, the World Health Organization (WHO) had the lead responsibility on AIDS in the United Nations. By the mid-1990s, however, it was becoming clear that the epidemic’s increase and devastating impact on human lives and on social and economic development was creating a crisis that demanded a massively expanded United Nations effort. In January 1996, the United Nations took the innovative step of bringing six United Nations organizations together in a joint and co-sponsored programme, UNAIDS. These original six were joined in April 1999 by UNDCP, and in October 2001 by ILO.

As the main advocate for global action on HIV/AIDS, UNAIDS leads, strengthens and supports an expanded response aimed at:
1) Preventing the transmission of HIV
2) Providing care and support
3) Reducing the vulnerability of individuals and communities to HIV/AIDS
4) Alleviating the impact of the epidemic

UNAIDS is not a funding agency, although it will support selected activities.

Key in all the work of UNAIDS is seeking new partnerships and creating leadership in the response to HIV that goes beyond political leadership.

Political leadership however is extremely important and we have actually two major events in the recent past that sought the involvement of political leaders: the Millennium Summit and the United Nations General Assembly on HIV/AIDS (UNGASS).

Member States of the United Nations gathered on 6-8 September 2000 at UN headquarters in New York to participate in the Millennium Summit. This summit was seen as an opportunity to articulate a vision for the UN and the world in the new millennium.

147 Heads of State and Government and 191 nations in total adopted the United Nations Millennium Declaration. The Declaration calls for the use of selected social and economic indicators to measure progress towards implementing the Declaration and the eradication of poverty worldwide by 2015. The indicators (48) are grouped in 8 goals. One of them is directly aiming at combating HIV/AIDS.

The Summit and its Declaration are helpful in the fight against HIV/AIDS because they deal with the underlying causes of vulnerability to HIV/AIDS ad include specific targets regarding HIV/AIDS prevention and care, as well as specific indicators by which to measure these.

The second important event is the UNGASS.

Alarmed by the massive impact of the epidemic, the UN general assembly held a special session on HIV in June 2001. At the meeting, governments agreed on the essential elements of a successful response, which were set out in a “Declaration of Commitment”.

The Declaration outlines specific steps to be taken in prevention, care, alleviation of impact, and mobilization of resources. It also sets out specific targets to achieve by certain dates. In these terms, it represents a consensus on priorities and a monitoring tool for accountability.

Why do I mention these events – because of the countries you are coming from have signed on to these declarations and we can keep them accountable. (Again UNAIDS is assisting Governments in their reporting requirements, monitoring and evaluation) ( In addition regional commitments have been made as well. Reference is made to the ASEAN declaration).

In addition, young people are particularly mentioned in these declarations as a target for prevention, care and support.

The UNGASS declaration of commitment mentions as indicators: Percentage of young people aged 15-24 who both correctly identify ways of preventing sexual transmission of HIV and who reject major misconceptions about HIV transmission and the percentage of young people aged 15-24 reporting to use a condom during sexual intercourse with a non-regular sexual partner.

Bringing down the number of young people infected with HIV is the key indicator in the response to HIV/AIDS.

The reason is obvious.

UNAIDS in December 2002 released the latest estimates for HIV/AIDS in the world, numbers that remind us that the epidemic is growing. Despite all of the attention that the sickness has received over the past decade, more and more people are getting infected each day – 7000 on a daily basis in the age group 15-24.

Currently, there are 42 million people living with HIV/AIDS in the world. Last year, for the first time in the epidemic’s history, the number of women living with HIV has risen to 50% of the global total.

The epidemic in Asia and the pacific is growing, with an estimated number of 7.2 million people infected with HIV. About 2.1 million young people (aged 15-24) are living with HIV.

Best current projections suggest that an additional 45 million people will become infected between 2002 and 2010 – unless the world succeeds in mounting a drastically expanded, global prevention effort. More than 40% of those infections would occur in Asia and the Pacific (11 million).

It should be stressed, if left to run its natural course, HIV will cause devastation on an unprecedented scale – not only in other countries (Africa) and in neighboring countries (Thailand, Cambodia, India) as is often referred to, but also here, in Malaysia.

HIV/AIDS affects the most productive sectors of our society – in some countries there are only very young children and very old people left to develop the nation, because the productive young adults have died of HIV/AIDS. In other countries, there are hardly any teachers to teach the children or Government officials to govern the country.

The impact of HIV/AIDS is rolling back decades of socio-economic growth in developing countries, and rapidly weakening economic stability. Labor productivity has been cut by up to 50 percent in the hardest-hit countries. Faltering basic services such as health, welfare, education and judicial systems.

We can easily conclude that the future trajectory of the global HIV/AIDS epidemic depends on whether the world can protect young people everywhere against the epidemic and its aftermath.

We can also easily conclude for this region that we are still far from our goals of reaching out to young people. Going back to the earlier mentioned success/impact indicators; how many young people would you feel have correct information related to HIV/AIDS. How many young people and peers have you met who still go “HUH” if you ask them about HIV/AIDS. How many do you know who are using a condom with a non-regular sex partner.

It is recognized that not enough has been done to reach out and to involve young people. It is therefore tremendously welcomed when organizations like WYF take a lead in reaching out to young people and move forward in taking action.

Addressing Stigma and Discrimination is a focus that is acknowledged as key in the response to HIV/AIDS. It was for a reason that this topic has also been selected for the World AIDS Campaign last year and this year.

To put in bluntly – stigma kills.

Stigma at societal level can lead to silence and denial – a refusal to acknowledge and deal with HIV/AIDS. This reinforces ignorance and fear, allowing prejudice to thrive, risky behavior to go unchanged and uncaring behavior to go unchallenged. It also ensures that people living with HIV/AIDS and their families remain silenced and sidelined.

I admit nothing is more easy than blaming others for something that is related to unaccepted behavior in society – drug use, sex work, sex before marriage, extra marital sex etc. This is where the ‘pointing fingers’ are coming from. It is not me – but them. “I am not a drug users and so I am safe. I never had sex with a sex worker so no need for me to worry”

Stigma and discrimination thus hasten the propagation of HIV/AIDS, especially among the young who are more vulnerable (also in terms of peer pressure) than adults. Stigma and discrimination hinder access to information, to services and to help that would allow people to understand the risks, protect themselves, act in their community and country, or accept the illness and the infected people around them.

Stigma and discrimination feed on existing inequalities, power structures, cultural traditions, religious beliefs, xenophobia, racism, gender relations and economic deprivation.

Providing correct and accurate information is key in tackling stigma and discrimination. Education (formal and informal) can break the vicious circle between the epidemic and HIV/AIDS related stigma and discrimination.

An interesting comparison can be made to SARS, which is affecting some of the countries in this region. SARS kills only 4% of the total people getting infected – far less than the number of people getting infected with HIV. In Malaysia 19 people get infected per day with HIV. In three weeks we only have confirmed 1 SARS case – possible 3.

Most in society knows about SARS and the way it is spreading, websites to visit for the most recent updates, hotlines to call. We have mobilized resources for an instant poster campaign. We have health workers in airports and extra wards in hospitals. We have mouth caps in every pharmacy and shopping malls and we ensure the prices are kept at an affordable rate (if not lower). We discuss it, we advise each other, we compliment action taken, we criticize those that have not, and we organize an ASEAN emergency meeting this weekend to ensure the spread is kept at bay.

You don’t need me to make the comparison to how HIV is being dealt with. If we had dealt with HIV the way we deal with SARS, we would not have 7.2 million (and possibly more) in this part of the world or 51.256 cases in Malaysia today.

What I wanted to illustrate with the above is that when we educate rather than discriminate, we can prevent. When we don’t point fingers, when we do not stigmatize, we can act.

It is our challenge to move into a response that equals the response to SARS. For that we also need commitment and leadership from your side. We need to move away from stigma, discrimination, fear, denial and silence. We need to learn from each other and built on each other’s best practices. Networking and sharing of resources could be a great entry point to enhance the response to HIV/AIDS.

On behalf of UNAIDS I would like to express again our appreciation for the efforts of WYF in taking a lead role to involve and reach out to young people including those young people who have been infected. We are also grateful for those organizations/institutions and individuals that have supported WYF in getting this workshop organized.

For the participants; I wish you a great and fruitful workshop and we are looking forward to the results. We know what works – young people can make a difference!

Thank you.

Angeline Ackermans
UNDP /UNAIDS Representative

Skills Building

By Mehalah Lingam
State Manager
Family Planning Association Melaka / Malaysia AIDS Council

Skills Building Workshop on Reproductive Health of Adolescents Module (RHAM) is designed to train the staff and volunteers precisely youths/peer educator on the use of RHAM to be resources person/facilitator/advisor as they [adolescents/young people] are more on providing the educators with sexual and reproductive health [SRH] education and life skills for a healthy and responsible lifestyle in the mission of achieving holistic youth development which consequently contributes to nation building and later to take on the role as trainer/educator to deliver SRH information and education.

Thus, this program is based on greater emphasis on the youth involvement and participation in the decision making process to gain better commitments in the activities and achieve greater results, for example, a young person who is aware, assertive and responsible. Activities designed in a way not to teach what should be done but more on the participants’s experience and opinions on certain SRH-related issues. This makes the program more effective. This involves activities like group, group presentation, games, recreational events where the participants get together exchanging ideas and view while getting to know each other.

By the end of the program, the participants will be able to acquire leadership and life skills and the youth (peer educator) will be able to educate their peers in both in and out of school setting effectively. Moreover, the participants would have received guidance and are able to conduct RSBW or RHAM youth camps in a youth-friendly manner and critically assess one’s belief and values.

HIV/AIDS in the ASEAN Region & AWP 2 (PP) 

Impact of HIV/AIDS

Assoc. Prof. Dr. Mary Huang Soo Lee 
Department of Nutrition and Health Sciences
Faculty of Medicine and Health Sciences
Universiti Putra Malaysia
Serdang Selangor

Introduction

Malaysia, as a developing country is undergoing similar demographic changes as other countries in the region and despite declining fertility rates, due to previous high fertility is experiencing a population age structure characterized by what is often referred to as the result of “population momentum”. This increase in the number of young people is also accompanied by various social changes brought about by development. The availability of educational opportunities in the country and the availability of employment has indeed delayed the age of marriage thus exposing the young to behavior which if not addressed will threaten the quality of life we fight so hard to achieve. Among the threats, the spread of infectious diseases including HIV/AIDS which is also fueled by globalization and communication. Although HIV/AIDS has been around for more almost twenty years and despite the large investments in research and education the epidemic does seem to abate and in fact today we are aware that no country has been spared. Those of us Asia have been warned by the World Health Organization (WHO) that as we enter into this new millennium, the epicenter of the HIV/AIDS epidemic has shifted to Asia, home to the most and second most populous countries in the world (China and India).

Population of Young People in Malaysia

In Malaysia, young children aged zero to fourteen made up more than 40 percent of the total population (43.8% in 1957, 44.6% in 1970) partly due to the post war deliveries but this percentage started to decline in 1980 by more than three percentage points with every census (39.5% in 1980, 36.3% in 1991 and 33.3% in the year 2000). In the meantime, the proportion of 15 to 24 years old as a percentage of total population has remained at around one fifth of the total population (19.5% in 1970, 21% in 1980, 19.1% in 1991 and 2000). However despite the fact that the percentage distribution by age has declined slightly, total population of young Malaysians has increased. Figure 1 illustrates this point very clearly. In 1957, there were 2.7 million young people between below fifteen years and 1.13 million aged fifteen to twenty-four. Since then the number of children below fifteen has almost tripled to 7.8 million and those in the older age group of fifteen to twenty-four had similarly more than doubled to 4.5 million in 2000. Taken together, at the end of 2000 the population of young people numbered 12.3 million. The preparation of young people for adulthood is a long process, which begins at the time of birth. Compare to other periods of our lives, the adolescent years have been look upon as a unique period of growth accompanied by new challenges for the country in general and families in particular.

The HIV/AIDS Epidemic in Malaysia

Ever since the first case of an individual infected with the HIV was reported in 1986, the country has seen yearly increases in HIV positive individuals, those displaying AIDS as well as in the number of people who have died. Evident from Figure 2 is the increase in HIV infections from three in 1986 to 778 in 1990, 4,198 in 1995, 5,107 in 2000 and in 2002, 6,978 new infections were reported. Concurrently the number of AIDS cases increased from 1 in 1986 to 18 in 1990, 1,168 in 2000 and 1,193 in 2002 (Ministry of Health 2003). In fact in the year 2002 an average of 19 confirmed cases were reported daily. A breakdown of the data by age group (Figure 3) reveals that more that 80% of those infected are in the age range of 20 to 39 years, a time when young people are at the prime of their lives, an age cohort of individuals on whom the country depends for development. That this youthful segment of the Malaysian population should have to bear the brunt of the effects of the infection has far reaching consequences if nothing is done to arrest the speed at which the infection is growing.

Figure 3: Age Distribution of HIV Infected Individuals 
(Source: Ministry of Health, 2002)

Between the end of 1991 and 2001 the number of young people infected has multiplied a few times. Figure 4 gives us a clearer picture of the exponential increase in the rate of infection among the young in Malaysia. This was especially so in the case of those aged twenty to twenty-nine where the increase in the number detected in the year increased by two and a half times from 806 in 1991 to 1955 ten years later. It can be assumed that the rate of infection detected in the 20-29 years age group were indeed of young people who were infected earlier, some perhaps in their adolescent years.

Proximity to the Golden Triangle has partly contributed to make the threat of drugs on Malaysia youthful population. Despite great efforts and resources spent on addressing the problems associated with drug abuse, results have not commensurate the efforts put in. Today with the advent of HIV/AIDS drugs only serve to fuel the infection in the country.

Impact of the HIV/AIDS Epidemic

In general the impact can be examined at the macro as well as the micro level. At the macro level the epidemic’s impact is felt mainly because it affects the very same population age group on whom the nation depends on for progress and development. However the impact can also be felt at the micro level that is at the family level, the very basic unit of our society.

Impact on the country

That developing countries have been disproportionately affected by the epidemic is an understatement. The devastating effects of the epidemic have in some countries crippled the already poor and depleted economies in such a manner that economic gains over a generation is lost to the epidemic. In some badly affected countries of Africa life expectancy has been reduced from more than sixty years to less than fifty years. Part of the reason is the fact that HIV affects the very same cohort of people on whom the country relies for economic development.

World wide, 23 mill workers 15-49 (the most productive segment of the labor force) carry the virus. In Malaysia for example 82% of those diagnosed with HIV/AIDS is in the age group of 20 to 39 years. In the urban areas they are needed to provide the labor for industries and in rural areas young people are also needed for food production. In fact the food security of some countries have been threatened due to the death of young people from the epidemic. Therefore HIV/AIDS cuts supply of labor for development. However before the infected succumb to the infection the deterioration of health slashes the income for many workers. Industries on the other hand face increased absenteeism thus increasing labor cost and at the same time valuable skills and experiences are lost to the nation.

At the same time countries are also burdened with the responsibility of higher health expenditures needed to treat the secondary infections that are associated with HIV/AIDS. More than that social needs of infected as well as affected families will have to catered for.

Impact on the Family

Basically HIV/AIDS can be looked upon as a huge problem with profound social and economic implications. As an epidemic, it affects the very basic unit of our community and country. Its association with behavior or lifestyles and therefore morality makes acceptance of individuals living with the virus, difficult. At the same time people living with HIV/AIDS (PWHAs) are also ashamed or afraid to reveal their status. The fact that a PWHA can continue to live a normal life for many years with no sign nor symptom makes revelation of their status to partners not urgent and his by itself endangers their partners. The lack of a cure nor vaccine further accentuates the fear (of contracting the virus despite having basic knowledge) in people having to come into contact with them. Under such circumstances testing to confirm HIV status is avoided because knowledge of their own status can also mean that they will or can be stigmatized and discriminated against. This becomes a vicious cycle in which the virus is then allowed to infect whoever does not take the necessary precautions.

At the family level persons living with HIV/AIDS (PWHAs) are faced with the dilemma on whether to reveal their status to his/her loved ones. To their spouses this is often perceived as a betrayal of trust. This is especially so in the case of those who were infected through unprotected sex (outside of the marriage and it could also have been before marriage) or the sharing of needles with an infected person. Beyond the initial stage of this feeling of betrayal, the spouse has to face the question of whether he/she has also been infected. Sometimes diagnoses are only made after a child borne to the couple is diagnosed with AIDS. In situations like this there is every possibility that by the time the virus is diagnosed in the infant, parents are already infected.

The absence of a cure for AIDS makes diagnosis a death sentence. The long illness itself weakens PWHAs labor inputs. Not only does the family experience a loss of income, they are also burdened with the need for money to be spent on the increasingly frequent infections experienced due to degeneration of the immune system. Antiretroviral therapy available to prolong the lives of PWHAs are costly and because it is a recurring expenditure the economic impact on families is long term. Wives often find themselves forced to work (sometimes without much skills nor education) in order to support their families. Children are forced out of school because of lack of money. Children are forced into child labor often into exploitive and extremely hazardous forms of work. In such situations young girls are especially vulnerable because they are sometimes forced into occupations, which exposes them to the infection. Therefore it is not surprising that families affected by HIV/AIDS can be push into poverty due to the inability to produce (and therefore earn an income) coupled with the increased need for medication for infected members.

Older parents who depend on their children for economic support suddenly find themselves without the economic security they thought they would have with children. More than that AIDS often leave grandparents solely responsible for the economic as well as psychosocial development of the grandchildren now that their children and their spouses have succumbed to the virus. At the same time women, as wives or mothers (who could also be infected) find themselves having to care for the infected because of cultural expectations due gender

While the impact of the epidemic differs in form and magnitude across families, communities and societies, one salient feature remains: the impact on a child’s life. Children of families whose parents who have AIDS find themselves having to face various forms of uncertainties in their lives. UNAIDS in conjunction with UNICEF and USAID brought out joint report “Children on the Brink 2002” highlighting the fact that it is estimated that by 2010 an estimated 106 million children under the age of 15 would have lost one or both parents and of this number 25 million of them due to HIV/AIDS alone. The same report estimated that in 1990 AIDS orphans made up 0.9% of all orphans of the world. This decrease to 0.5% in 1991 but by the year 2001 this same percentage had increased to 12.4%. It is estimated that by 2005 the proportion of AIDS orphans as a percentage of total orphans will further increase to 18.6% and escalating to 23.7% in 2010. Children impacted by HIV/AIDS risk exploitation, including physical and sexual abuse. Isolated from emotional connections with the family, some engage in risky sexual behavior. Those forced to live on the streets may turn to prostitution and crime as a means to survive. While most of these children were born free of HIV, they are highly vulnerable to infection (Children on the Brink, pg. 9). UNICEF in fact pointed out that from their study of AIDS orphans many of them were deprived of basic education.

Conclusion

HIV/AIDS is one epidemic that has transcended two millenniums. Asia is now depicted to be the new center of the infection, which has been shown to have devastated several if not most African countries in the last twenty years. The knowledge we have gained from the epidemic in Africa must surely be put into action in Asia before it is too late. With a large proportion of our population in the age group most vulnerable to the infection, concerted effort must be made to protect them. The time has come for action not procrastination. Collectively countries can hope for greater success at preventing the virus from destroying individuals, families, communities and countries.

References

Datin Paduka Rahmah Osman. (1997) “Status of Policies and Legislation on Reproductive Health and Role of Advocacy” paper presented at “A Regional Symposium on Promoting Advocacy for Adolescent Reproductive Health and The Role of Media.” 20-23 October 1977, Kuala Lumpur.

Malaysia (1996) Yearbook of Statistics, Malaysia 1996. Department of Statistics, Malaysia, Kuala Lumpur.

Malaysia. (1998) Vital Statistics Peninsular Malaysia 1997. Department of Statistics, Kuala Lumpur.

Malaysia (1999) Mid-Term Review of the Seventh Malaysia Plan 1996 – 2000. Prime Minister’s Department. Kuala Lumpur.

Ministry of Health (1997) Manual Latihan Fasilitator PROSTAR (Training Manual for PROSTAR Facilitators). AIDS/STD Division, Ministry of Health. Kuala Lumpur.

UNAIDS (2002) “Fact sheet “Impact of HIV/AIDS on Older Populations” UNAIDS.

UNICEF, UNAIDS and WHO, 2002. Young People and HIV/AIDS: Opportunity and Crisis. June 2002.

UNICEF, UNAIDS and USAID (2002), “Children on the Brink 2002” UNICEF, New York

Zulkifli S.N., W.Y. Low and K. Yusof (1995) “Sexual Activities of Malaysian Adolescents.” Med. J Malaysia. Vol. 50. No.1. Pg.: 4-10.

Involving Young People-(PP) Dato Dr. Faizal Ibrahim

Issues on Stigma and Discrimination

Presented by
Paul Toh

GIPA Advisor
UNAIDS SEAPICT

Background on Stigma and Discrimination

The epidemic of fear, stigmatization and discrimination first described by Jonathan Mann (1987) has undermined the ability of individuals, families and societies to protect themselves and provide support and reassurance to those infected.

The London Declaration on AIDS Prevention following the World Summit of Ministers of Health on Programmes for HIV Prevention in January 1988 was one of the first international statements to recognize that :

“Discrimination against, and stigmatization of, HIV-infected people and people with AIDS and population groups undermine public health and must be avoided”

In 1989, the United Nations Centre for Human Rights organized the first international consultation on HIV/AIDS and human rights. This reaffirms the public health rationale for the prevention of HIV/AIDS related discrimination and the promotion and protection of human rights in the context of HIV/AIDS.

In late 1996, the second international consultation on HIV/AIDS and human rights was convened jointly by UNAIDS and the Office of the High Commissioner for Human Rights. Over here, 12 international guidelines on HIV/AIDS and human rights were drafted.

International human rights law seeks to gurantee freedom from discrimination on many grounds including sex, race, language, religion, political opinion, birth or other status. In Resolutions 1995/44 and 1996/43, the UN Commission on Human Rights confirmed that the phrase “other status” is to be interpreted as incorporating health status, including HIV/AIDS. This means that discrimination against people living with HIV/AIDS or those perceived to be at higher risk of infection is legally prohibited.

Resolution 49/1999 of the UN Commission on Human Rights reaffirms that:

“Discrimination on the basis of HIV or AIDS status, actual or presumed is prohibited by existing international human rights standards, and that the term, ‘or other status ‘ in non-discrimination provisions in international human rights texts should be interpreted to cover health status, including HIV/AIDS”

Stigma and HIV/AIDS

Sociologist Erving Goffman(1963) defined stigma as a “ significantly discrediting” attribute possessed by a person with an “undesired difference”

Stigma is also a powerful means of social control applied by marginalizing excluding and exercising power over individuals who displays certain traits

Gilmore & Somerville (1994) have described what they see as the four main features of any stigmatizing response as :
* The problems that initiates the reaction.
* The identification of the group of individual to be targeted.
* The assignment of stigma to this individual or group.
* The development of the stigmatizing response.

Felt stigma often precedes enacted stigma and may limit the extent tow hich the latter is experienced ie PWAs that are aware that many other PWAs have been treated badly by others may want to conceal their serostatus.

Forms of HIV/AIDS-related stigmatization, discrimination and denial
Societal and community level

Generally,laws, rules , policies and procedure may result in the stigmatization of people with HIV/AIDS. In view of this , a significant number of countries have enacted legislation with a view to controlling the actions of HIV/AIDS affected individuals and groups.

These laws include :
* Compulsory Screening and testing of groups and individuals
* Prohibition of people with HIV/AIDS from certain occupation and types of employment
* The medical examination, isolation, detention and compulsory treatment of infected persons
* Limitation on international travel and migration
* Restriction of certain behaviours such as injecting drug use and prostitution

Individual Experience

People’s experience of HIV/AIDS related stigmatization and discrimination is affected by commonly held beliefs forms of societal stigmatization and factors such as the extent to which individuals are able to access supportive networks of peers family and kin.

1. Overall, the negative depiction of people living with HIV/AIDS – reinforced by the language and metaphors used to talk and think about the disease
2. The impact of HIV/AIDS on women is particularly acute
3 Individual denial of risk and vulnerability is not an uncommon response to the epidemic.

Stigma and Discrimination – Moving from Evidence to Advocacy

From evidence we see stigma and discrimination is obstructive to HIV/AIDS prevention and care, therefore we hereby look into the advocacy to cope in this area.

1. Political Advocacy.
Visibility and openness about HIV/AIDS are prerequisites for the successful mobilization of government and community resources to respond to the epidemic. This deter PWAs from being open about the status and governments need to administrate laws to protect PWAs to fight public stigma.

2. Sharing of Best Practices with respect to existing codes and legislative framework. This contribute to international efforts ensuring that HIV/AIDS discrimination is reduced and its effects ameliorated.

3. More systematic research needed
Given the intensity of activity , it may be surprising to learn that relatively little systematic research has taken place on the forms that HIV/AIDS related Stigmatization and discrimination take, the different context in which they occur and their varying determinants

4. Higher profile of stigma and discrimination at conference
Review of abstract from recent regional and international conference on HIV/AIDS shows that the majority of papers dealing with such concerns focus either on individual cases or experiences or on the role of NGOs in exerting pressure on governments and national authorities to act and prevent further discrimination.

5. PWA Empowerment
Empowering HIV positive people has always been the key in the past to move forth GIPA(Greater Involvement of PWAs) and fight stigma and discrimination. People with HIV/AIDS must be empowered enough to fight for their rights and place in societies.

Recommendations

Among People with HIV/AIDS(PWAs)

* PWAs need to be better educated about their rights as patients and about how to
get help to challenge the discrimination and stigmatization they face in health care settings

* PWAS need legal education and access to the justice system to address the
violation of their rights in the context of employment and education

* A more enabling environment need to be created to increase the visibility of
PWAs groups so that discrimination, stigmatization and denial can be challenged collectively

In the Health Care Sector

* Concept of universal precautions needs to be promoted and the irrational and
selective use of inappropriate “safety measure” reduced.

* Human rights principles of informed consent and confidentiality need to be more
widely adhered to in medical practice so that health care staff and professionals do not violate patients’ rights to informed choice, privacy and counseling

* Newer concept and labels such as “barrier nursing” or “immune compromised
patient” are becoming synonymous with HIV/AIDS and hence serve the same function as the label AIDS. These concepts need to be used for all types of infections without revealing the nature of infection tos taff involved in providing care.

* There is an urgent need to extend awareness among health care staff concerning
their legal duties and responsibilities towards patients in general and patients with HIV/AIDS in particular

* Necessary protective gear, including good quality gloves must be supplied in
adequate quantities to all staff in government hospitals so that the non- availability of such items is not sued as an excuse to deny care to HIV+ patient

* Mandatory testing must be strongly discouraged for individual, including
pregnant women, regardless of what treatment they seek as it often leads to denial of services to those found to be HIV positive

* Counseling services must be made available to all health facilities to provide the
psychosocial needs of HIV-positive patients

– To help individuals who wish to learn of HIV status without the fear of disclosure
to others, voluntary testing accompanied by counseling must be provided in all cities and districts

* Lack of adequate AIDS education can give rise to irrational fears and
inappropriate care practices. Hospitals staffs at all levels need access to appropriate HIV/AIDS education. No medical institution should be allowed to withhold or limit HIV/AIDS education to any groups of staff.

* HIV testing should not be carried out without the informed consent of patient and
without pre-and-post test counseling. Treatment and care must be provided following positive test results

* Above all, in order to reduce levels of discrimination within the health care sector, it is important to challenge beliefs about casual modes of HIV transmission and address the diffuse and irrational sense of personal risk among staff

* Anti-Discrimination Legislation and Other Legal Measures
Legislation is needed to reduce discrimination and stigmatization of PWAs in all
areas but particularly in relation to health care and employment

* Effective complaint mechanism should be put in place in the health care sector
for HIV+ people to seek protection of their rights as patients

* Fear-based AIDS messages and biased social attitudes towards infected people
urgently need to be tackled, as fear and prejudice lie at the core of discrimination, stigma and denial

* It is not enough to raise awareness about HIV/AIDS, its transmission routes , or
even about legal rights. What is urgently needed is anti-discrimination policy supported by a law that will ensure the protection of HIV+ people rights

* Employment sector must develop policy guidelines on AIDS to help and support
HIV+ workers

* Child care institutions must not be allowed to transfer responsibility for care and
protection of HIV infected children to other institutions

* Life insurance polices must be expanded in appropriate ways to address the
needs of HIV+ people desiring insurance cover and efforts must be made to
dispel misconceptions and fears about claims to existing insurance policies.

* Research on drug trials or any aspect of HIV patients’ lives within the health care sector may be conducted only after the informed/consent of the patient is secured.

Conclusion
HIV-related Stigma and Discrimination needs to be addressed especially in high HIV prevalence countries where there are huge visibility of PWAs. Advocacy training and capacity building is the ultimate step towards coping with HIV-related stigma and discrimination followed by intense education to the various communities at large in the Asia Pacific region.

The Role of men, Gender and sexuality

By Assoc. Prof. Dr. Mary Huang Soo Lee
Department of Nutrition and Health Sciences
Faculty of Medicine and Health Sciences
Universiti Putra Malaysia
Serdang Selangor

Introduction
In the early stages of the epidemic HIV/AIDS was perceived as a gay men’s disease. However with time it began to make its appearance in heterosexual men but because of it’s association with sex, it became apparent that the women would not be spared. In fact as we step into the new millennium, reports of women being infected in a year has outstripped their male counterparts. For example, while women made up 41% of total infections worldwide in 1997 in 2000 women made up 47% of total infection (UNAIDS various years). In fact in sub-Saharan Africa women form 55% of the HIV+ adults in 2001 and teenage girls were infected at a rate of five or six times greater than their male counterparts (UNIFEM, 2001).

In Malaysia the number of infected women has also risen. In 1990, nine women were identified as being infected with HIV. Five years later the number of infected women reported increased 17.8 times to 161 and by the end of 2000 it had tripled to almost 500. There were also concurrent increases in the number of women with AIDS as well as those who had died of AIDS. It against this scenario that the issue of gender has been examined more closely in order that more realistic programs can be implemented to arrest the epidemic.

Reasons for the increase in the number of infections in women are varied. They include biological make-up, socio-economic factors including economics, culture, gender, sexuality and the role of men. To tease out each of these factors would be impossible because they are all inter-related and in some cases one is part of another, but it would be safe to say that all of them contribute directly or indirectly to the vulnerability of women to infection. Thus as the epidemic matures we find it reflected in the increase in total number of women infected each year.

Biological vulnerability
Biologically semen contains more viral load than vaginal fluid and because in sexual intercourse semen is deposited in the vaginal and can remain in the vagina for long periods of time, the virus has ample time to infect a woman. Secondly, the mucosal surface in the vagina that is exposed to abrasions during sexual intercourse is much larger than that of the penis of a man, allowing for greater chances of entry of the virus. On the other hand younger women whose vaginas are not fully developed frequently experience tears and abrasions allowing for the entry of the virus. Thirdly, more women than men receive blood because of their reproductive functions (as in childbirth) that consequently predisposes them to the virus. It is also known that women often contract sexually transmitted diseases (STDs), especially genital ulcers that predispose them to the virus. Furthermore when infected with STDs women because of various socio-economic factors are slower of in some cases do not even have access to medical care.

Gender, Sexuality and Vulnerability
Perceived generally as part of culture, gender refers to women’s and men’s roles and responsibilities that are socially determined. Gender relates to how we are perceived and expected to think and act as women and men because of the way society is organized, not because of our biological differences (WHO, 2000). Gupta (2000) on the other hand reminds us that gender is a culture-specific construct and that there are significant differences in what women and men can or cannot do in the culture compared to another. Therefore the terms “masculinity” (associated with dominance) and “Feminity” (associated with passitivity) with its socially constructed ideals exist in all societies. However the general assumption across cultures is that distinct roles of men and women in are seen in the access to resources and decision-making authority. While men take on the productive roles, women are responsible for the reproductive and productive activities around the home.

Sexuality on the other hand is defined as the social construction of a biological drive. Gupta (2000:pg 2) reiterates that an individual’s sexuality is defined by whom one has sex with, in what ways, why and under what circumstances and with what outcomes. She goes on to say that the components of sexuality are:
1) Practices
2) Partners
3) Pleasures/pressure/pain
4) Procreation and
5) Power

To her it is power, underlying any sexual interaction, heterosexual or homosexual that determines how all the other Ps of sexuality are expressed and experienced. Power determines whose pleasure is given priority and when, how and with whom sex takes place. Wilton (1997) postulated that it is unequal power in sexual relations that leads to sexual double standards, which in turn has alarming implications for both men and women’s ability to prevent the sexual transmission of HIV/AIDS.

In the area of HIV/AIDS, such cultural constructs that predispose women to infection include the inability of women to negotiate safe sex, lack of information about her own health including about HIV/AIDS, various forms of violence against women, unavailability of services for positive women and gender expectations of men.

Inability of Women to Negotiate for Safe Sex
In most cultures of the world it is assumed that men should play the dominant role of initiating sex and that women should never be seen as aggressor but more importantly they should be ever ready to consent to having sex with their husbands. Women grow up believing that sex happens to them and men are taught that sex is something that they do. Negotiations (for whatever reason) for safe sex are not a right of women. The condoning of multiple partners relationships of men indirectly increases the vulnerability of women and more men than women visit sex workers (positive sex worker can pass on the infection to more that forty people in a year). This phenomenon is even more widespread in situations where husbands because of work are separated from their spouses for long periods at a time. On the other hand negotiation is perhaps not even an option considering the fact that women are less educated and therefore do not have access to health information which can save her life (studies have shown that some positive women had never heard of a condom until they were diagnosed as being positive). She may also be economically dependent on her husband and this makes her even less able to challenge the demands of her husband even if her life could be in danger. UNAIDS fact sheet on Gender and HIV/AIDS (2002) pointed out that research has found that up to 80% of cases where women in long-term relationships are positive had in fact acquired the virus from their husbands who had been infected through their sexual activities outside the relationship or drug use. Furthermore because HIV/AIDS is also spread through sex, negotiations for safe sex (including prevention of pregnancy) initiated by the woman herself could also be misconstrued that she herself had been unfaithful to her husband.

Lack of Access to Information About HIV/AIDS 
More women than men do not have access to basic education. This lack of basic education has far fetching results. This lack of education is a disadvantage when it comes to seeking economical independence. More than that it prevents the women from being able to find any information, including those information that can save lives. Women due to lack of education are ignorant about reproductive health information including sexually transmitted diseases including HIV/AIDS. Furthermore femininity means that women’s sexuality should be invisible and that it needs to be controlled. Talking about sex by way of gathering information could be misconstrued as being “loose” in some cultures. Under such situations no wonder some women had never even hear of HIV/AIDS nor condoms until they were diagnosed with the infection.

Violence Against women
Generally violent and coerced sex increases women’s biological vulnerability to HIV because of the possibly damage to the genital area. Men who abuse their wives were also more apt to have visited sex workers (Gupta (2002). Therefore in such extreme situations (often accompanied by economic and social insecurity) it is perhaps not inconceivable that women prefer to risk unsafe sex rather than face the more immediate threats to their well-being. Zierler and Keieger (1997) in WHO (2003) pointed out that it is the outcome of complex interpersonal negotiations in which social constraints of gender inequality play a key role. It is often the poorest women who have the fewest choices, run the most frequent risks and are most likely to become infected.

War and conflict situations increase the risk and incidence of gender based violence against women. In such instances a combination of factors including a breakdown in law and order and population movements all result in higher incidence of rape of women and girls thus exposing them to infection by military forces, who generally also have higher HIV rates, and emergency personnel. As women have to cope with lost of family property and support of family members they can also be forced into survival sex (in order to generate income for food).

Young girls are particularly vulnerable. In poverty situations ignorant parents sometimes “sell” their daughters to middlemen who promise to find legitimate work for them in the cities. These young girls are often sold to pimps in cities where they do not know anybody. Sometimes young girls are themselves attracted to the promise of luxuries from boyfriends who befriend them in order to live off them. Virgins in fact fetch high prices due to traditional beliefs. In Asia older men believe that their sex life can be revived by as much as ten years by having sex with a virgin. In some parts of Africa, positive men believe that they can be cured from HIV/AIDS if they had sex with a virgin.

Positive Women
Meanwhile positive women find themselves faced with double whammies. While carrying the virus they continue to play her roles as wife and mother having to physically care for their positive husbands and children. Women also find themselves discriminated against when trying to access care and support. Some of them have to face the wroth of in-laws and the community. In resource poor countries access to medical care for secondary infections often favor men because of their breadwinner role. It is also the case when it comes to anti retroviral that are very costly in developing countries. Wives themselves often give up the luxury of purchasing such drugs to prolong their lives in favor of their working husbands. The exclusion of positive women from clinical trials has also worked in favor of men because science has only been able to study the disease on men without giving due consideration to gender difference to response to intervention.

Gender and Men
It would be unfair to talk about gender and HIV without the mention that men are equally burdened by gender roles expected of them. In some cultures it is an acceptable that men have a variety of partners for after all they should be well versed in the art of love making in order to play their role as the aggressors. This predisposes them to the infection because some resort to sex workers for their first experience. Therefore it is sometimes not unusual to find that a man is already positive at the time of marriage and if he is not aware of his status can infect his new bride.

On the other hand the gender expectations of men and their manhood also prevent the acceptance of homosexuality. This has lead to stigma and discrimination that altogether forces those men who have sex with men keep secret their tendencies and therefore increase the risk to themselves and their partners including wives they had married in order to satisfy the expectations of their family and culture.

Conclusion
There is a lot of comfort for each of us to live up to the expectations of a society or culture. In fact any effort to challenge any of these expectations will be met with resistance. However we have to recognize that the HIV/AIDS epidemic is already more that twenty years old and yet we have not seen the any obvious reversal in trend except in situations when gender issues are addressed. Unless we do this, the epidemic will continue to bring sorrow and pain to the families affected, and destroy or nullify the economic and development gains countries fight so hard to attain. Gender roles and sexuality are based on perceptions of individuals in a society. They can be changed and if the adults’ perceptions are too difficult to change surely we must begin with the young because any time loss means lives and in this case girls’, women’s, wives’, mothers’ or grandmothers’ lives.

References:
Gupta G.R. (2002) “Gender, Sexuality and HIV/AIDS: the What, the Why, and the How” paper presented at the XIIth International AIDS Conference, July 12th 2002, Durban, South Africa.

http://www.eldis.org/gender/dossiers/Genderviolence.htm

Ministry of Health (2003). “HIV Infection, AIDS Cases and AIDS Death” Ministry of Health. Kuala Lumpur

UNAIDS and WHO (2002) “AIDS epidemic update” UNAIDS, Geneva.

UNAIDS (2001) “Special Session Fact Sheet: Gender and HIV/AIDS” given out at the United Nations Special Session on HIV/AIDS Global Crisis-Global Action. 25-27 June 2001 New York.

UNIFEM (2001) “Gender and HIV/AIDS” – Article for CSW, UNIFEM.

WHO (2000) “Gender and Health: Technical Paper”, WHO, Geneva.

Catalyzing Youth Networks

By Thomas Scalway
Consultant Panos Institute AIDS Programme London

Discussion:
Before we begin the process of developing an ASEAN youth network, we need to establish why we need an ASEAN youth network, and why we need to involve young people in responding to AIDS more generally. Clearly there are some obvious reasons. Youth need to be represented within the ASEAN decision making process. Young people are best placed to talk about their own experiences, needs and priorities. They are the ones best placed to motivate their peers – and it is difficult to overestimate the degree of influence that one young person has on another.

There are strong epidemiological reasons for targeting youth – most of which have been laid out already. Figures in 2000 and 2001 show young people between the ages of 10 and 24 years 2 make up 25 percent of the world’s population, roughly 1.7 billion people. Of these,86 percent live in developing countries. Although birth rates have declined since the 1980s, the young age structure, particularly in poorer countries, means an overall increase in the number of people entering their reproductive years. Statistically, young people now are the healthiest, most educated, and most urbanized of any previous cohort.

However, increasing urbanization, and increasingly stark gaps between rich and poor, brings greater exposure to high-risk behaviors. Complications associated with pregnancy, childbirth, and unsafe abortions are the major causes of death for women aged 15 to 19. In parts of Africa, young women are more than five times more likely than young men to contract HIV.
But young men are also highly vulnerable to HIV, often because they perceive themselves as invulnerable. Of all population groups, young men are the most likely to be involved in activities associated with HIV risk. They are more likely to inject drugs than any other group, and to do so using risky methods. In most countries they have more sexual partners than any other group, yet they report that they feel less at risk from AIDS. In many countries they are the most frequent purchasers of sex. They are also the group who most commonly assault their sexual partners.

Perhaps one of the most persuasive arguments for targeting young people is the fact that they are receptive to influences while they are still in the process of developing their attitudes and sexuality. Catching them while they are still finding out about their bodies and responsibilities to others makes more sense than trying to counter habitual attitudes and patterns of behaviour in older adults. In addition, many are still at school, where structures are in place to deliver education. In the developing world, more than 70 per cent of children currently complete at least four years of schooling – with young men accounting for more of this number than young women. Many young men are members of youth clubs, sports teams or other youth organisations. These formal and informal educational institutions already have a number of the necessary resources necessary for providing AIDS-related services. Where there are ready-made venues, teachers, role models, and large catchments of young men, the foundations of HIV-prevention programmes are already in place.

The United Nations estimates that one-half of all new HIV/AIDS cases are among 15- to 24-year-olds. Young people of both sexes are at a particularly challenging stage in the life-cycle, often facing problems such as unemployment, adolescent pregnancy, and drug and alcohol abuse. Each of these issues requires different approaches to reach youth and to respond to their needs.

So young people are a key window of opportunity within the response to HIV/AIDS. In this context it is particularly worrying that few countries have an official policy regarding adolescent reproductive health. Many countries, from the level of government down to schools and families, impose social or legal barriers to discourage young people from seeking reproductive health information and services. Religious beliefs, cultural traditions, entrenched notions of gender, age and sexuality restrict open and frank dialogue on young people, HIV/AIDS and sexual health. Similarly, hierarchies of age, and a range of other power inequalities, inhibit young people – particularly those most affected by HIV/AIDS, from having their say in the way their societies are dealing with the epidemic.

This is not a minor issue. This is a global epidemic, one that makes SARS look tame in comparison. However, the response to this epidemic, from the international level right down to the national and provincial level, is one that is very rarely driven by those with most at stake.

This can be highlighted by a brief examination of the way in which the response to AIDS is being shaped. As AIDS climbs up the international agenda, money follows, with more being spent now than ever before. Estimates range from $1.5billion to $2.8 billion spent in 2002. While some countries are decreasing their overall development budget, the proportion of money spent on HIV/AIDS is generally going up. The US, for example, has seen a six-fold increase in overseas HIV/AIDS assistance since 1995 and the UK has increased its HIV/AIDS spending from £38m in 1997/98 to £207m in 2001/02.

The renewed focus on HIV/AIDS was underlined when President Bush chose his State of the Union Address in January to announce that the US would spend $15 billion over 5 years on fighting the epidemic worldwide. The fact that the global HIV/AIDS epidemic was addressed in an event as high profile and important to the administration as the State of the Union Address, speaks of the increased recognition of the need to address HIV/AIDS globally. This announcement is also topical because of the way the US is allocating the funds. Rather than using them to boost up an international, coordinated response through the global fund, which only received a minority of funds, they are once again side-stepping international organisations and are making a series of bilateral agreements instead.

There seems to be an increased interest and urgency in addressing the epidemic in this region as became evident at a high-level meeting on HIV/AIDS — “Accelerating the momentum in the fight against HIV/AIDS in South Asia”. The meeting was organized by UNAIDS and UNICEF, the United Nations Children’s Fund, on 3-4 February 2003 in Kathmandu.

More money does not equate to more opportunities for participation. Conversely, many current strategies seem to be undermining locally owned and driven responses.

In a recent survey by Panos, only 24% of the 277 organisations working on AIDS thought that communities affected by HIV/AIDS were adequately represented in general decision making. Donors were asked about the extent to which institutional, bureaucratic or political constraints detracted from their efforts to ensure their work was guided, owned and implemented by communities most affected by HIV/AIDS. The majority reported that there was a real issue here, with 21.6% of all donors reporting that institutional factors almost totally prevented the work from being guided, owned and implemented by communities most affected by HIV/AIDS, with a further 5.4% saying that these factors completely precluded ownership by those most affected. Remarkably, only 2.7% of donors feel that these factors do not come into play.

And there are strong institutional reasons why participation and ownership – particularly amongst youth – has not been as great as it should have been.. With levels of spending on HIV/AIDS increasing year on year, people working within donor agencies are under intense pressure to keep transaction costs down, and to prove maximum impact of the funds they spend.

Institutional constraints generally require relatively short project funding cycles. Projects with concrete deliverables, like posters, leaflets or high-profile events, are invariably favoured. As those within the donor community are testifying these constraints are becoming more intense, not less.

So we are operating in an environment where decisions are being made often without our input, where donor agencies are having to shift large amounts of money quickly without being able to consult with the different stakeholders, including youth. We are operating in an environment where national and international politics can eclipse the needs of those most affected, and the age group which offers the greatest window of opportunity.

None of this is rocket science, and these sentiments have been expressed in various different ways in just about every AIDS forum in the last 20 years. International policy discourse is replete with declarations, statements and objectives targeting youth. One of the key challenges will be to create a network, a functional political entity that can hold policymakers to their word.

Youth legislation and policy:
There are various different policies we should keep tabs on.
ICPD: The Program of Action drawn up at the International Conference on Population and Development in Cairo in 1994 urges countries to “ensure that the programs and attitudes of health-care providers do not restrict the access of adolescents to appropriate (reproductive health) services and the information they need…”
According to IPPF: This Conference sketched out some important sexual and reproductive health rights includes being able to:

Have a happy life and personal relationships; decide yourself whether to be sexually active or not; enjoy a safe and healthy sex life in which you protect yourself and are protected by your partner against disease and illness; feel completely well and happy in your body and; your mind; decide if, when and how many children to have; make sure that women and girls stay healthy while pregnant; make sure that babies are born healthy…
GFATM The global fund for AIDS, TB and Malaria has changed the landscape of AIDS funding. The fund should bring real increases in the amounts of cash designated for HIV/AIDS, and, as a tool for measuring international commitment to the cause and the contribution of individual countries, the fund should be an effective tool.
Within the Global Fund, one of the criteria for proposals is:

“Aim to eliminate stigmatisation of and discrimination against those infected and affected by HIV/AIDS, especially for women, children and vulnerable groups.”

Based on the idea of Kofi Annan in April 2001, when he called for the creation of a Global Fund to fight AIDS TB and Malaria, the fund was brought to life after the United Nations General Assembly Special Session on AIDS in autumn 2001 and approved its first round of proposals in 2002. The second round of proposals was approved in January 2003. The creators of the Fund hoped it would become the main funding mechanism channelling cash from heavyweight donors through to the most needy recipients. Its remit is global and it disburses funds on a country basis, mostly for integrated programmes involving a collection of organisations at national level. For many, the fund is the best method for balancing the need for a rapid dispersal of cash to fight HIV, whilst ensuring this is done in an accountable manner, with ample participation of local stakeholders. However, cash for the fund has not been as forthcoming as originally hoped. Instead of having 10bn dollars a year for HIV/AIDS, only 3.3bn dollars has been available over a 3 years time span. The impact of these shortfalls have been far-reaching. For example, it was announced in February 2003 that the Fund had to ask Caribbean communities to downgrade a proposal it had submitted as the Fund did not have sufficient money to support the whole project.
In the Southeast Asian region most country’s have a national CCM and the contact addresses and phone numbers of the CCM members are available on the Global fund website. The ASEAN Task Force on AIDS decided in October 2002 to put forward a proposal to the Global Fund to fund its Workplan II.

UNGASS (General Assembly Special Session on AIDS) represented a watershed in terms of United Nations thinking on HIV/AIDS and included a stress on youth issues.

The UN General Assembly Special Session on AIDS noted in its Declaration of Commitment on HIV/AIDS ‘Global Crisis-Global Action’ ‘that people in developing countries are the most affected and that women, young adults and children, in particular girls, are the most vulnerable.’ The UN committed itself to

‘By 2005, ensure that at least 90 per cent, and by 2010 at least 95 per cent of young men and women aged 15 to 24 have access to the information, education, including peer education and youth-specific HIV education, and services necessary to develop the life skills required to reduce their vulnerability to HIV infection, in full partnership with young persons, parents, families, educators and health-care providers;’ 

(Article 53 UNGASS Declaration of Commitment)
In another relevant part of the declaration the commitment is to:

‘By 2003, develop and/or strengthen strategies, policies and programmes which recognize the importance of the family in reducing vulnerability, inter alia, in educating and guiding children and take account of cultural, religious and ethical factors, to reduce the vulnerability of children and young people by ensuring access of both girls and boys to primary and secondary education, including HIV/AIDS in curricula for adolescents; ensuring safe and secure environments, especially for young girls; expanding good-quality, youth-friendly information and sexual health education and counselling services; strengthening reproductive and sexual health programmes; and involving families and young people in planning, implementing and evaluating HIV/AIDS prevention and care programmes, to the extent possible;’ (Article 63, UNGASS Declaration)

One of the indicators, which measures the impact and continued commitment to UNGASS at a national level is the success or failure of a country to have a policy or strategy that promotes sexual health education for young people.
UNGASS also named as a target that the percentage of young people aged 15 -24 who are HIV-infected are reduced by 25% in most affected countries by 2005 and a 25% reduction, globally, by 2010. We should aim to remind our UN colleagues and other policymakers of these commitments.

MDG: At the United Nations Millennium Summit in September 2000 world leaders placed adopted the Millennium Development Goals (MDGs), which set clear targets for reducing poverty, hunger, disease, illiteracy, environmental degradation, and discrimination against women by 2015. Each goal is divided into targets, which come with a set of indicators to measure progress in achieving the Goals.

Goal number 6, Target 7 deals with HIV/AIDS:“By 2015, to have halted and begun to reverse the spread of HIV/AIDS” One of the indicators is the prevalence rate amongst 15-24 year old women.
The Convention on the Rights of the Child (CRC): The CRC (1989) is a set of legal rules. The CRC has 54 different paragraphs (called articles) that cover the rights of children and young people. Some of these rights apply to your sexual and reproductive health.191 Governments around the world have signed and approved the CRC. They have promised to make sure that all children and young people below the age of 18years, survive, grow, are protected and participate as active members of society.

So, with all this legal and policy infrastructure supporting young people and HIV/AIDS, and the clear imperative to bring young people more central due to their window of opportunity and the fact that a variety of forces are covering their voices now, how do we best bring this about?

There are a number of existing networks and programmes aiming to mobilise youth in the region – and we certainly do not want to reinvent the wheel. Rather we want to build on existing bodies and networks, and draw on the different strengths of each.
First we need to ask ourselves some crucial questions. Are the regional networking needs of young people being met? Do young people have sufficient input into ASEAN and other transnational policy processes? If not, what kind of a structure could give them this voice? If a new initiative is required, are we absolutely certain of our mission and our objectives?

Outlining a process: 
Firstly, we need to establish our needs (presuming we are not happy with the status quo), mission and objectives. Here we need to work out what the problems are, what the solution to these problems are, and from these, determine our objectives and mission.
Then we need a stakeholder analysis. Who is already doing what? We need a list of organisations that are involved in doing the above types of activities. How could we draw upon the skills, networks and capacities of these organisations? How do we bring them on board?
Then we need to come up with a plan. This will build on the needs we have identified, the solutions to the various goals and challenges of regional networking and advocacy on HIV/AIDS. It will maximise synergies with other organisations and networks, and piggy back on other programmes’ capacity wherever possible.

First, here are some general considerations:
These are drawn from Panos’ efforts at networking, and our experience in participating in other peoples networks – ranging from Regional HIV/AIDS Information Network in Southern Africa, through to the UNAIDS partnerships within the new HIV/AIDS Communication Framework, and our work with Rockefeller on Communication for Social Change.

1) Networks are difficult to sustain. Goals and motivations need to be anticipated and supported. Political and institutional tensions can be destructive – use clear explicit frameworks and memorandums of understanding. Talking and face to face communication is much safer and more valuable than email. Be sensitive to local territorialities.

2) Fundraising needs to take place both short and long term. In the short term there is a need for visible “products”, strong indicators, and for creative approaches to developing a holistic, unified strategy, then fundraise for small parcels of it.
In the longer term it is important to be involved in policy and funding discourse for example the Global fund and Country Coordinating Mechanisms, continual PR, networking, and fostering articulate champions. The people setting the AIDS agenda should never be able to forget that this youth network is there.

3) We need to strike balance between the provision of structure, and allowing youth to lead. Different groups have different needs, but some degree of structure and order makes activities more fun and productive than encouraging young people to reinvent their own structures whenever the whim takes them.

4) Need to make it fun. Most of the successful projects for youth have a strong “fun” component. The strategy of “edutainment” is one of the most effective methods of educating all ages, particularly young people. And projects can be made to be fun, even if they have a serious purpose. Pop concerts with people singing about HIV/AIDS are an obvious example. In South Africa they have Love Life, which has a Love Train. A brightly coloured train that tours the country providing vital AIDS information and services.

5) ITCs provide new opportunities. The internet, mobile telephony, digital imaging, the drop in the cost in producing high quality sound or video files, new high speed data cables and satellite connections all offer valuable new opportunities for engaging youth. Young people are some of the quickest to pick up on the value of all these technologies.
New networking technologies are bring a range of new opportunities that need exploiting. Examples of online forums, telephone hotlines, and other use of technologies abound. And the affinity many young people have for technology, plus the options for privacy in discussing sexuality, or for broadcasting messages to large audiences, means that the way in which young people use and adopt these technologies is really at the very first chapter of its evolution
.
6) The media is one of your most powerful allies. Youth issues make good news, reporters are anxious for the kinds of stories young lives produce. The media is a key instrument in terms of influencing policymakers. Get the media on your side, and the policymakers will follow. The media is also a key method for communicating across networks. The media can offer a forum for the exchange of HIV information (it is one of the main sources for young people) as well as news about recent policy and programme developments. The media can offer a space for debate, where different views can be aired and heard, often without the constraints of age and social status that hinder participation of young people in other types of debate and decision making.

7) The last point is obvious, but it can easily be forgotten as we get increasingly sophisticated in our strategies, and more complex as institutions or networks. Remember that the aim is to reduce the massive harm that AIDS is wrecking, to care for one another, to work within a common cause for a common purpose. It means being non-judgemental of behaviours and beliefs that are different to ours, and of accepting and embracing each of our differences

Final Report on Implementations

Final outcome

By Thomas Scalway
Consultant
Panos Institute AIDS Programme
London

This document includes a discussion paper that was presented to plenary in the ASEAN Regional Workshop on HIV/AIDS, Stigma and Discrimination, and suggests a possible framework for taking forward some of the activities suggested in this forum.

Overview of the meeting

This was an inspiring and interesting event. The group of people that came to this meeting were enthusiastic, engaged and immensely kind and hospitable to all the guests and foreign speakers. This was against a backdrop of SARS which at this time was high on the media agenda.

Background

This workshop was presented as a World Youth Foundation initiative in collaboration with the Ministry of Youth & Sports Malaysia, Ministry of Health Malaysia, the Economic Planning Unit of the Prime Minister’s Department Malaysia, Panos UK, Malaysia AIDS Council and the ASEAN Secretariat as co-organisers. UNAIDS provided technical and advisory support. Specifically, there remains scope for greater clarity on the workshop’s place within the other ASEAN, UN and governmental structures for AIDS and Youth.

A number of different groups attended, young people, executives of youth focused organisations, civil servants, UNAIDS representatives of the 10 ASEAN countries, plus some Asian countries outside the ASEAN region (India. Nepal, Sri Lanka), as well as some African countries.

Findings of the meeting
A central part of the meeting consisted of developing and facilitating a structured set of activities over the course of the day. All 160 participants were split into groups that reported to the plenary and were to brainstorm on:

1) What their needs were and how these could be accommodated by a regional network
2) What organisations were working on this already, and what synergies could be developed through working with these organisations
3) Given the above, what objectives and tasks could be agreed upon for taking the regional network forwards.

To facilitate the sessions related to networking, Panos presented a paper (attached below) on Participation and Ownership amongst Youth within the Response to HIV/AIDS. The day went well, and although people were getting tired by the last session there seemed to be the sense that the exercise had been engaging and productive.
Summaries of all the discussions above will be circulated by WYF once all the documents are in place.

Participants’ recommendations arising from the meeting
Following the groups’ brainstorming session, the consensus on the way forwards for the regional network was:
1) through the setting up of an email network
2) an online discussion forum
3) a web portal linked to the ASEAN website,
4) through the setting up of a senior steering group of which Panos and other key stakeholders will be a part.

Steps forward:
1) an email network for all the participants should be set up with a moderator facilitating the email exchanges and catalysing discussions. This network should provide a forum for the participants of the meeting to share experiences, resources and to foster collaboration between participant members. For the sake of expedience and efficiency, WYF should set up the network, leaving scope for different organisations to rotate the moderation of different conversations. As a first measure to maintain the momentum of the meeting, participants should be invited to share their thoughts on the process, their plans for future work, and to engage in youth-friendly exercises such as a the sharing of photos from the meeting.

2) the discussion forum is another associated product that could be launched in the next few weeks. The strategy for launching this forum should draw from the (excellent) contributions from the group discussions, particularly from representatives of the Multi-Media University. Before the discussion forum is launched there should be open and participative consultation with all the potential members through the email network mentioned above.

3) a senior working group needs to be convened to take forward activities planned in this meeting. This working group will receive and discuss the report of the meeting, The working group should include (among others) WYF (as project proponents), Malaysian AIDS Council, ASEAN representatives, UNAIDS representatives, UNICEF, and Panos South Asia. The group will be charged with overseeing the further development of the ASEAN Regional Youth Network on HIV/AIDS, and the integration of this network into other similar processes happening under other auspices (for example, there is a clear need to build on the capacity and momentum of the UNICEF youth leadership programme). WYF will act as the focal point for convening this working group for the time being.

5) an ASEAN Regional Youth web portal on HIV/AIDS should be developed, with a concept paper drawn from the organisations with the appropriate capacity. The content, format and audiences of this youth portal should draw upon suggestions from the participants of the meeting in the break-out groups. Consultation from all participants of this meeting will also be sought through the discussion forum and email network mentioned above. There is a need to also explore the possibility of linking the youth network to existing youth networks, with links to the ASEAN websites, UNAIDS, UNICEF, WYF, WAY, Malaysian AIDS Council and others.

The following points were raised for consideration:
1) Clear objectives for the network.

2) Using a participatory approach and nurturing a sense of ownership, fostering active participation in the setting up of the network and throughout the decision making process.

3) Active participation by youth in the designing, implementing and monitoring of the network.

4) Not competing with members within the network and not duplicating work of other members in the network or the work of other similar networks.

5) Develop a strategy for resource mobilization. As volunteers’ energy and time is at times inconsistent, there needs to be a commitment of staff time and funds to cover the network’s implementation and sustainability.

6) Strong coordination between all the partners involved, including developing a mechanism for regional coordination among all the partners involved.

7) Build in elements that will ensure sustainability in terms of topics to be discussed and receipt and use of funds.

8) The development of a time frame to help partners stay focused.

Other issues to consider
1) Follow up on the expressions of interest as discussed in the workshop, ensure that more partners across the region are involved and that the World Youth Foundation (in specific the proposed ASEAN Regional Youth Network activities) are not duplicating the work of other organizations working in this area;

2) Obtain more information on UNICEF’s initiative on Young People’s Leadership Programme for the East Asia Pacific region and other agencies in the region such as Health and Development Network, ICASO etc.

Closing Message : Datuk Seri Mohd Ali Rustam

Rt. Hon Datuk Seri Mohd Ali Rustam
Chairman World Youth Foundation

Distinguished Guest, Speakers and Participants

I am delighted to be given this opportunity to address you at this critical moment. I hope that you have had a pleasant stay here in Melaka. I have been told that you have been working tirelessly towards achieving a common goal – how to involve young people in an effective respond towards HIV/AIDS particularly on issues pertaining to stigma and discrimination. Efforts to involve young people so far have no been very successful and new initiatives should be brought about to meet the required results.Despite your heavy schedules, I am happy to learn that it has not been all work and not play. Some of you managed to find time to experience historic Melaka. I am sure that Jonker Walk and its surrounding was fun and interesting.I congratulate your notable effort in working towards a common goal for this workshop, Addressing Stigma and Discrimination associated with HIV/AIDS.The enthusiasm shown by the young of ASEAN and those from non-ASEAN countries, have been overwhelming. I was told that there was even a very emotional and heart-warming session when a youth who is HIV positive took center stage and related his personal account of how he was stigmatized and discriminated when he told his friends that he was suffering from HIV/AIDS.Your gathering in historic Melaka is therefore significant and historic. It is the beginning of a small step and I am confident our young will achieve the goal of this workshop by working together.This meeting has provided a platform of information sharing on how to overcome stigma and discrimination and ideas must be translated into concrete action. It will be of no use if we merely talk without any follow-up action.You, the young who represent our future, must push for change. There needs to be a shift in priorities, in particular funding with regard to the fight against HIV/AIDS.Sadly, the recent US led unilateral war on Iraq is a good example where billions were spent on destruction and killing. If only a small percentage of the billions spent on the global war-machine is channeled for constructive use, I am sure then that our fight against the global threat of HIV/AIDS and other communicable diseases would see more achievable results.Ladies and GentlemanThe problem of HIV/AIDS is a very real one that must be addressed. The young are our future and if we allow HIV/AIDS to destroy them, there will then come a time where our future generation will be wiped out from this planet.

HIV/AIDS is a twenty years old pandemic that has already taken the lives of 22 million people. Globally there are approximately 42 million people who have died of HIV/AIDS and 800000 children have been infected with the virus out of 5 million new cases reported. Every day 500,000 young people are infected with an STD – most of them in the 20 – 24 age group. It is dreadful and a gargantuan challenge of this millenium. Around 95% percent of these people are living in the developing world. On the local front, there are some 51,256 HIV/AIDS reported cases in Malaysia. The numbers are a conservative estimate as many HIV/AIDS cases go unreported. There are those who say that the present estimates are tripled that of the 51,256. This is very alarming.

Currently 46,000 people are living with HIV/AIDS while 5,424 have since what is alarming is that men, between 13 to 39 years old, represent the majority of HIV/AIDS cases. This figure represents
94% of the reported HIV/AIDS cases in Malaysia.

Ladies and Gentlemen

I welcome the recent move by the Malaysian government, in particular the Ministry of Health, who has allocated RM4 million annually to the Malaysian AIDS Council, a leading NGO in Malaysia to enable them to expand their services to marginalized groups in our fight against HIV/AIDS. Also notable was the Health Ministry’s allocation of RM3.6 million to Melaka last year to carry out counseling, screening and treatment programs pertaining to HIV/AIDS.

The effort excludes the Health Ministry’s PROSTAR program that carries the motto of “By Youth, Through Youth, From Youth”. This program is aimed at getting Malaysian Youth, age 13 to 25, to directly involved in HIV/AIDS awareness campaigns, fund raising and leadership building courses. More than 40,000 young people have so far been trained as facilitators under the PROSTAR program to help those living with HIV/AIDS.

Although aimed at tackling HIV/AIDS issues among young people, PROSTAR also advocates healthy living lifestyle. This is important as PROSTAR will help educate our young, to avoid activities at risk that could lead to HIV/AIDS infection.

Ladies and Gentlemen

Even as we fight the HIV/AIDS war, we are faced with another deadly virus in the form of Severe Acute Respiratory Syndrome (SARS). The world is now gripped in fear of SARS and many countries have not been sparred from the threat of SARS.

As with those living with HIV/AIDS, SARS has brought to the forefront several issues as mandatory health declaration, screening, quarantine and discrimination. Sadly, those who have been living with HIV/AIDS have suffered stigma and discrimination in silence far too long. I hope this workshop will help us realize that we should not stigmatize and discriminate those suffering from HIV/AIDS, SARS or any other disease. Instead we should focus more on prevention and cure and also put into place support services to help those who are affected and infected by HIV/AIDS or any other disease.

What is needed is care, support and pro-active action by all. Let us conclude this workshop with a great sense of commitment towards our fight against HIV/AIDS.

Ladies and Gentlemen

To this end, I complement the effort of the World Youth Foundation in bringing together young people both from ASEAN and non-ASEAN region to discuss issues that concern them.

You, have had the chance of addressing common issues while collectively finding practical solutions to overcome them.

Of greater significance at this gathering is the creation of the ASEAN Regional Youth E-Network. This Network will represent the way forward aimed for information sharing, effective co-operation
and collaboration.

From this, progress will be made through follow-up meetings and formation of a senior steering committee comprising of UN, governments, international bodies, national and international NGO’s. The ultimate goal will be the creation of a sustainable ASEAN Regional Youth Portal. This portal will be a database of youth organizations and groups working with issues related to HIV/AIDS and will be accessible to everyone

Melaka could be the right choice for the setting up the ASEAN Regional Youth E-Network secretariat to administered the management of such a portal while implementing related programs. This is because Melaka has been endowed with excellent infrastructure, and in-line with the state government’s vision to make Melaka an IT hub, the state has build an incubator center at Ayer Keroh, Melaka.. Te Center among other’s will promote K-Economy, E-Commerce, E-Learning, E-Banking etc.

Efforts are also being made to promote Melaka as a youth state . The construction of World Youth Foundation secretariat in Ayer Keroh is one such example . With such facilities and complementing policies, I am confident that your vision here today will become a reality in historic Melaka in the future.

To this end, I urge UNAIDS, the ASEAN Secretariat and related organizations to play a leading role in making the E-Network a reality. There must be proper funding to help the development of the ASEAN Regional Youth E-Network.

Ladies and Gentlemen

Before I conclude and officially declare the workshop closed, I would like to thank once again all speakers and participants for their time and inputs.

My sincere thanks also goes to the Ministry of the Health, the Ministry of Youth and Sports, the Economic Planning Unit in the Prime Minister’s Department and the ASEAN Secretariat for their sponsorship.

My appreciation to the Malaysian AIDS Council, UNAIDS Malaysia, Panos Institute and the Foundation’s Secretariat for their technical assistance and advice.

I welcome you to enjoy the dinner and the special performance by our cultural troupe. I hope that you had a wonderful experience while you were in Historical Melaka. Please do come back and I hope you will put Melaka on your visit list on your next overseas trip.

Thank You.

Rt Hon Datuk Seri Mohd Ali Rustam
Chief Minister of Melaka

Reflection

Adji Vera Hakim
ASEAN Secratariat
Distinguished Guest, Ladies and Gentlemen,
It is a pleasure for me to address you at the closing of this very inspiring and enjoyable workshop.To all the talented youths in this room, I have felt and heard over the past few days your energy, ideas and support for PLWHA. The challenge is to maintain this energy and momentum, and share the knowledge you have learned from this workshop, to other youths in your respective countries, and lead them in the fight to end stigma and discrimination. Your involvement is key because you are the most important asset to your country.
It is important that our governments are involved and commit to the youth and HIV/AIDS issues and to mainstream these issues into their programs and activities. Therefore the follow up activities after this workshop are critical steps towards the realization of a positive environment.
I would like to thank delegates from Member Countries for placing importance to this workshop, which is reflected in the number of participants attending from all over the ASEAN, South Asia, African regions.
I wish to thank Honorable Datuk Seri Mohd Ali Rustam for your vision and support to the youth, to the organizers of the World Youth Foundation, in particular Ms. Varsha, for all her hard work, the speakers and moderators for their information and clapping support, and to all the volunteers who have helped make this a very enjoyable workshop.
Thank you.
Jamuna Shrestha
I am Jamuna Shrestha, I have been working on HIV/AIDS Prevention and Reproductive Health Programme in Nepal Red Cross Society from 1996 to date. In this connection, I had participated many workshop and conference in the mean time, I got another opportunity to participate one workshop in April, which was focusing on HIV/AIDS addressing to Stigma and Discrimination from the World Youth Foundation, Melaka, Malaysia from 25th to 28th April 2003.
I found something in the workshop. That workshop was really very very informative for young people, which is really very memorable. Because, sexual health is very crucial and sensitive issues in all over the world and it is really very difficult to share our sexual heath issues with other because of many problems. Basically, everywhere I found that different our country’s religious and culture with some short of environment can’t support to get information about Sexual Health. But that workshop could sensitized to all participates it is very important things of our life and we must be know/learnt knowledge regarding sexual health for the better life. In such a situation as a young people I felt that we have to give and share good and adequate information regarding Sexual Health, which really can support to enhance Life Skill of young people. But, young people need enabling environment and support from the family, community and other for learning of sexual health because of good decision and create their own skill for preventing Reproductive Health problem with HIV/AIDS and STIs.
“Workshops have to move from plain talk to solid action. Therefore, to see WYF include the setting up of the ASEAN youth network, as one of the workshop objectives is commendable. However, networks are hard to sustain; for it requires goodwill, patience and consistency as well as the real desire to make it work and serve its function to help young people contribute to their community.
To my peers who are young people of today, leaders of tomorrow.it’s time to walk your talk. Let’s get out there and give back to our community.”
Thank you.
Mahendra Chalise
Nepal
AIDS is a fatal disease like forest -fire which if not checked and controlled in time, is sure to spread out in the countries around the world irrespective of whether they are advanced or developing ones. It is rapidly advancing as elsewhere, in ASEAN Region too because of ignorance of it. This is why HIV/AIDS awareness is a must in order to check it. Adolescent youth is a time when they are very susceptible to various causes of HIV infection (for example peer pressure, impulsiveness, risk-taking etc.). So disseminating the information to them all about HIV/AIDS by various means and Medias must be undertaken. For this, ASEAN Regional Workshop is be very fruitful for me as a participant of an under develop country. I am sure that the gained knowledge definitely helps me to use in my future program
RJ
Malaysia
I have wonderful time when I was in Malacca with participation of youth from all over country. Its impressed me very much. Young people came out and hug me in front of the audience it really touch.. I was so glad that there are so many young people that are so aggressive in doing the job for promoting HIV/AIDS awareness to public.
Severe and widespread stigma and discrimination have been a feature of the HIV pandemic since its emergence, blighting the live of millions of PLWHA and causing denial, complacency and lack of action that proving deadly. This is particularly true within many Asian societies where PLWHA face intolereble levels of stigma and discrimination and where the epedemic is
fuelled by and atmosphere of blame and secrecy.
My personal view it is mainly because of the lack of information and corrective intitutional machanisms beside the judgemental socio cultural, climate and the false of invicibility of people. Discrimination of PLWHA is one of the worst forms of human rights violation. It is also the biggest impediment to applying the vast exprience of PLWHA. 17 years has been a long wait.Now we need to unleash a new campain. This time not just against HIV/AIDS but against stigma and discrimination.
Im just dignose for 2 years and not much exprience in discrimination but still there is. I have no idea how my friend in Kuala Lumpur become know about my status. It is happen when donate my blood than a week after the doctor from the Penang General Hospital call me up in my work place and wanted to see me. At first of course I feel anxiety and so on but I manage
to visit conselor in that hospital and she counsult me nicely.Just imagine your housemate change the pad lock when come home at 2.00am and their give the answer it just can’t used anymore and another friend who borrow me a
bath towel throw the towel for the doormate. How could it be if this happen to you. My father he dosen’t know about my status he just suspect and simply tell my sibling that not to share food with me and don’t hit the mosquito just chase it away from me. I have nowhere to go and I just keep quite. What ever it done is done.Being HIV+ is nobody fault. Society should
not think they are at risk by being close to PLWA. Discrimination is cruel.Mother Theresa said… If you judge people you have no time to love them.
HIV/AIDS is and opportunity for me. It lifts my spritis to a higher status. I may not get all what I want, but surely I will get what I need. Thousand of candles can be lighted from a single candle and the life of candle will not be shortened.The only way of making progress against the epidemic to replace shame with solidarity and fear with hope.
Acknowledgement
The Government of Malaysia
Ministry of Youth & Sports Malaysia
Ministry of Culture, Arts & Tourism
Ministry of Health, Malaysia
UNAIDS Malaysia
United Nations Development Programme, Malaysia
World Assembly of Youth
Malaysian Youth Council
4B Movement Malaysia
Malacca Youth Council
National Unity Department Melaka
Tourism Department Melaka
Police Department, Melaka
Kl Pengurusan Progresif Sdn Bhd
Surya Printers
City Bayview Hotel, Melaka
Majlis Perbandaran Melaka Bandaraya Bersejarah
Tourism Malaysia
Brigade Seni Melaka
Volunteers and All Support Staff of World Youth Foundation
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World Youth Foundation (299361-M):An NGO in Special Consultative Status with the Economic and Social Council of the United Nations

Address: World Youth Foundation, P.O Box 584, 75760 Melaka, Malaysia. Telephone: +606-2320911 Fax: +606-2323911 Email: wyfhq@wyf.org.my