ONLINE DISCUSSION SUMMARY - PART I

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ONLINE DISCUSSION SUMMARY - PART II

PART I

Gender Focus Group Online Discussion Summary

ICTs Focus Group Online Discussion Summary

PLWA Focus Group Online Discussion Summary

Youth Focus Group Online Discussion Summary

Diaspora Focus Group Online Discussion Summary

Build consensus that gender is the critical variable and precondition to success in the fight against AIDS

Identify obstacles to women moving into leadership spaces at all levels

Determine strategies for an enhanced leadership role for women

Achieve gender parity in leadership across the region in combating AIDS

Include the gender perspective and issues in all guidelines, documents, programmes, etc., of ADF 2000.

Some participants responded to three highlighted problem areas:

a) There appears to be a gender schism in leading the fight against AIDS. Males manage the scientific and resource components, while women are more accepting of care giving, advocacy and administrative roles. How do we get equality of responsibility/leadership across the board?

b) Female-controlled technologies lag because of decisions made by men, largely, to invest funds in vaccines rather than microbicides. What approaches can shift leadership to a more gender-balanced technology strategy?

c) The women’s movement has been slow to take on the AIDS agenda, despite their success in giving leadership to reproductive rights and empowerment issues. With the UNAIDS campaign to increase male participation in AIDS prevention, is women’s leadership potential equally compromised by the dearth by women’s groups? What approaches can get women’s movements involved with HIV/AIDS?

Views were solicited on the following questions AS THESE RELATE TO LEADERSHIP FROM THE PERSPECTIVE OF THE ISSUE OF GENDER:

a) AIDS is still with us, despite the concrete efforts to stop the epidemic.

Where do we fail? How and why?

b) What are the gaps in our present leadership responses from the perspective of gender?

The group was also asked to consider how the gender dimension of the theme should be presented in what is being planned as an interactive conference with multisectoral, international participation.

Media

The contribution of the media in shaping views and attitudes towards AIDS victims was highlighted as a form of hidden leadership that is often taken for granted but it affects all other leadership behaviour -- how women sufferers are portrayed how women care givers are perceived, how family members are shown to relate to each other around the care of a sufferer. Media leadership needs to be groomed or directed because of the potentially wide multiplier effects on policy makers, religious leaders etc.

Some examples of projects were presented. For example, the United Nations interagency project entitled, "Gender Focussed Responses to Address the Challenges of HIV/AIDS", an initiative funded by UNAIDS, UNIFEM, UNFPA and implemented in six pilot countries (the Bahamas, India, Kenya, Mexico, Nigeria, Senegal, Vietnam and Zimbabwe) through the UNIFEM offices was described. The objective of the project was to expand the constituency for HIV/AIDS by getting the women's movement on board. The activities included an orientation workshop for UNIFEM and its partners (NGOs, media, research organisations, training institutions, policy makers and donors) which was a one day exercise that effectively helped these changemakers to see HIV/AIDS as a gender issue and not just a health issue. The workshop culminated with the formation of three groups in each country willing and motivated to work on the following areas:

Empowerment of people affected by HIV through information;

Empowerment of people affected by HIV through capacity building;

Empowerment of people affected by HIV through human rights

The project then provided support technical and financial to each group. The first group undertook indicative research on the gender dimensions of the epidemic in the country. The second group developed a resource guide for NGOs on how to empower women to negotiate safe sex and the third group, largely composed of media personnel, has trained representatives of mainstream media in each country in the gender and human rights dimensions of the epidemic, given them small fellowships to live with organisations working with PLWHAs and then supported their writings in mainstream media which are now generating public debates on these issues. Advocacy workshops are being conducted in these countries with policy makers to start processes that can influence policy in favour of people living with HIV.

The project has now expanded to nine countries and will soon be in another six to eight countries through a process of decentralised transfer of learning – the pilot countries will become the ‘hubs’ of learning.

There have been some useful training tools developed in this process which are on the internet. The women's movement in the six countries is definitely on board. In these countries women's organisations have conducted the community-based research and this has sensitised them to a large extent besides the workshop processes. Also the direct contact of gender in development reporters with the organisations of PLWHAs has been very fruitful.

On overview of another project, Horizons, was shared with the focus group members. The mission of Horizons is to strengthen and refine the response to HIV/AIDS in developing countries through operations research on topics of global significance. For example, Horizons aims to develop "best practices" for:

Reducing the risk of acquiring and transmitting sexually transmitted infections (STIs) including HIV, through interventions to promote changes in individual behavior and community norms.

Preventing, diagnosing, and managing STIs.

Mobilizing non-governmental organizations (NGOs), communities, and governments to provide effective care and support services for persons infected with or affected by HIV.

Ensuring private-sector participation in HIV/AIDS prevention and care activities.

Expanding care and support for people and families infected with and affected by HIV.

Assisting mothers and families in preventing mother-to-child transmission of HIV.

Strengthening the impact of voluntary counseling and testing on behavior change.

Mobilizing NGOs and communities to develop effective responses to the epidemic.

Horizons gives explicit attention to the effects of gender inequality on the transmission of HIV and STIs, the unique vulnerability of youth to infection with HIV and to losing parents to AIDS, the need to involve people living with HIV/AIDS in programming decisions, the importance of recognizing and addressing stigmatization and discrimination, and the crucial link between prevention and care activities. Horizons implements field-based, applied operations research in developing countries. Using a participatory approach, Horizons actively collaborates with partner organizations, international agencies, and national and local institutions in countries around the world, including government ministries, national AIDS committees, non-governmental organizations (NGOs), universities, and others. Horizons also focuses on building local capacity to conduct operations research and on mechanisms to disseminate and utilize best practices that emerge from operations research. The research priorities for HIV/AIDS were expected to evolve over time. Horizons has built a balanced portfolio of more than 60 research projects on ten major topics that have global policy and program relevance:

1. STI prevention, diagnosis, and management;

2. Care and support services for person infected with or affected by HIV/AIDS;

3. Stigmatization and discrimination against persons living with HIV/AIDS;

4. Social marketing, private sector involvement, and workplace issues;

5. Community mobilization and capacity building;

6. Gender and sexuality;

7. Youth;

8. Voluntary counseling and testing;

9. Effectiveness and acceptability of barrier methods;

10. Integration of HIV/AIDS services with maternal-child health and other services.

Such projects could serve as examples of good practices and provide an opportunity to share lessons learned and new initiatives.

HIV/AIDS, gender and religion

Comments on the issue of religion in relation to HIV/AIDS were added to the discussion. The very strong linkage between religion, HIV/AIDS and misogynist views of women was stressed. In essence, religion (as broadly practiced in our context - and as we know it), is inherently patriarchal. The often-confusing response of either the church, or Islam and other religions, to the issue of HIV/AIDS stems from a misogynist platform, that also views women from a patriarchal lens... (where women's rights over their bodies, are hotly contested, both by the church and other major religious groupings.). These issues were clearly articulated in the "Beijing plus 5" debate as well as in the International Conference on Population and Development (ICPD) fora.

In addition, there are interesting responses that we could draw from some of the activities of such groups as the Positive Muslim group based in South Africa (that have a cautious, but useful approach to HIV/AIDS that has attracted the support of Muslim leaders.)

The other side of the coin relates to the recent meeting held in Addis Ababa on the 125 virgins and HIV, organized by the Ethiopian Orthodox Church. It would be useful to address the response of the church (it's moral obligation in educating members from a progressive perspective, as opposed to the often-entrenched patriarchal notion of women in general).

Also, an interesting issue would be to address the controversial view and denial of the Catholic Church in the whole HIV/AIDS debate, as well as the very controversial and progressive views held by the emerging progressive Catholic movement. The discussion could focus on the controversies, the denial, approaches vis a vis gender and what needs to be done to address the leadership question.

Although few comments were made on postings and issues raised, it is hoped that during the Forum, the Gender Focus Group would help to ensure that they are addressed by the many levels and types of leadership.

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Discussion summary

A special interest group on ICT and HIV/AIDS was set up to discuss challenges and opportunities by ICT. Members of the focus group so far agree strongly that ICT has a major role to play and is a very effective tool for the transfer and exchange of information and knowledge in the fight against HIV/AIDS. 
  
Discussion Content 
 
To assist with starting off the discussion, a set of questions were put together for
members to consider. The questions were formulated around the sub-themes of
ADF2000. The question raised were:

1. Will information and communication technologies (traditional 
and modern) have any role in the fight against HIV/AIDS? -  
Will there be a link between AIDS, Development and the role 
of ICT? 
 
2. Where do you see ICT to be most effective? In research?, clinical 
trials?, in treatment?, in patient education?, in professional 
training, in prevention or just in providing general information 
to journalists, policy makers and population. 
 
3. What is the role of ICTs in bringing diverse institutions 
working on/against HIV/AIDS together (agencies, research labs, 
care providers, advocates, etc.)  
 
4. Will there be impact on leadership, partnership (local institutions 
and communities), public private at different levels (eg. in 
mobilizing resources, setting priorities)?  
 
5. Will there be a specific ICT role in mobilizing the diaspora 
against HIV/AIDS in home countries, regions? 
 
6. Is there any specific link between ICT, gender and HIV/AIDS? 
 
7. Is the current information (databases, consumer, policy and 
legal information, etc) on the Internet of any use to users in 
Africa? 
 
8. What should be done to make already available information 
on the net to be useful to users in the region? 
 
9. How should we effectively exchange information to learn from 
country responses? 
 
10. What are the key challenges in accessing and using ICT for 
the fight against HIV/AIDS? 
 
11. Which are the priority groups (youth, women, policy makers, 
media, etc) in accessing to ICT. What will be the strategies 
for bringing access and content to these groups? 
 
12. How can ICT be used to mobilize leadership and partnership 
among these groups? 
 
13. What are the potential projects for ICT in the fight against 
HIV/AIDS? (eg. for leadership, for PWAs, for youth, diaspora, researchers and 
advocates…)  
 
 
Observations 
 

Following discussion of these questions the group has identified a number of areas where ICT can play and is playing a significant role in the fight against HIV/AIDS: 
 
a. sharing of information in a timely and efficient manner 
b. providing a platform for debate 
c. fostering new partnerships 
d. creating, accessing and updating accessible databases 
e. getting second opinion for specific diagnosis 
f. continuing medical education 
g. promoting acceptable practices 
h. improving collaborative efforts to save time and resources  
i. enhancing patient education  
j. enhancing prevention  
k. bypassing confidentiality problems and taboos 
l. elaborating better policies, programmes and priorities  
m. providing content moderation and increasing content relevance  
n. providing form for advocacy for new treatments, drugs, etc.

During the course of further discussion, it is expected that these will be considered 
further and perhaps more items will be added or some of the above combined.  
 
Members have raised concern that when looking at ICT components, care must be
taken not to dwell only on connectivity but to include other technologies such as 
radio, TV, drama and outreach. It has been recognised that there is need to
identify or develop methodologies for passing content from one medium to the 
other such as from the Internet to community radio.  

Recommendations 
 
The recommendations that emerged from the discussion are as follows: 
 
a. A resource database should be created. The objectives of creating the database
should include raising awareness, providing contact information so that connections that reach individual users can be facilitated. The database should also aim to address some of the areas identified above. Access to the database should target specific interest groups.  
 
b. A network of key stakeholders and partnership members should be developed.  
National AIDS Control Programmes (NACP) were identified as key partnership
members that should be included and should play a significant role in such a
network. Other members were identified as UNAIDS programmes, donors,
government ministries, NGOs, associations of people living with HIV/AIDS and 
regional organisations.  
 
c. Mechanisms for moderating, accessing and summarising what information is  
available through ICT should be developed. These will highly assist with concern
over possible questionable validity of some of the information that is obtained 
through ICT such as through the Internet.  
 
d. A guide on how to use ICT effectively in the identified areas should be developed. 
 
Further recommendations are expected to emerge during the Forum.
 

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1. The GIPA principle is "working and making a difference". In many countries we are recording progress and have managed to put HIV/AIDS on the agenda of many sectors-media, labour, business etc. More and more people now come openly as HIV/AIDS infected or affected persons. The community around has understood the possibility of living positively and for a long time as HIV+. Moreover, we have come a long way in Africa from the situation where family members systematically shunned their loved ones with HIV, to the situation today where increasing family members are standing by their loved one and cheer them on in their GIPA achievements.

Although those progress, we still have a long way to go. In many countries we are still far away. Many HIV+ people struggle on their own and sometimes against stigma from family and society.

2. In Swaziland we have an examples of a group of relatives of PLWA determined to break the silence of HIV at family and community levels. The group, named "Parents and close relatives AIDS support organization"(PRASO), support their children who go public and encourage other families to stand by their children side and "hold their heads high" as they say.

Apart from the good experiences of GIPA, we also have to keep in mind about some of the bad experiences. Especially the South African case, where a lady, who spoke in public about her PLWA activities, was murdered. The South African case of Gugu Dlamini's killing should be remembered all over the world. This example, among others, is a demonstration that the life of PLWA activists and leaders are at stake. In South Africa, PLWA have learnt and are continuing to learn from this painful experience and the City of Durban is using this to educate communities about HIV/AIDS and how to live with PLWA.

3. How do we improve the PLWA situation? Some of the lessons we have learnt are that we need to:

Work with PLWA on the whole issue of disclosure and the context within which it should happen or be made.

Promote, within the family, an open communication between women and men concerning sexual issues and reproductive health.

Work with families of the PLWA to equip them with ways of dealing with the news. PLWA need to know how to inform their family and educate them in order to have their support.

Educate and prepare our communities on HIV/AIDS issues such that they are ready for disclosure and are equipped to accept and live with PLWA.

Society needs to know that PLWA can stay healthy and strong for a long time. Examples/witnessing of individuals living with HIV/AIDS should be used extensively in the education of others to the reality of this virus. Statistics and facts tend to be very unrealistic and meaningless without including a human touch.

In order to raise the profile of PLWA and ensure their leadership role, we need also to move beyond "giving a face" to HIV/AIDS to being a uniquely skilled force that is crucial for the effective management of HIV/AIDS. Emphasis should be placed on the skills and impact of PLWA’s active involvement. The unique experience of living with HIV makes the PLWA an expert and a leader on a number of issues relating to HIV/AIDS and its management. In order to achieve this, a comprehensive skills building programme, including technical skills and personal development of PLWA is key. It is critical that we invest in the people to ensure that they are effective but also that they are equipped to deal with the demands of the role.

Stigma and Discrimination

1. The question of empowering PLWA and the challenge of their leadership role cannot be successfully addressed before tackling the issue of overcoming the stigma and discrimination that is associated with HIV/AIDS. PLWA go through problems of stigmatization, discrimination, isolation, and denial of opportunities. The challenge is that even in countries that have policies that protect the rights of PLWA and despite some progressive legislation, such as in Uganda and South Africa, PLWA are still discriminated against in practices and in many ways.

Society needs to know that someone who looks healthy and strong can be HIV+. People should realize that only few PLWA have gone public. There are many more people, who work in organizations without knowing their status. Even some of those who make the country and company rules are HIV+ themselves. They should be put for once in PLWA shoes and see how difficult it would be for them to be discriminated against.

2. Examples of discriminations are numerous. Most of the time people, as well as religious representatives, think that those who get infected are sinners. At the same time, some PLWA are also religious representatives and their situation is very difficult. With such declarations from their institutions they find it difficult to disclose their status. The resulting effect is that some of them die neglected leaving behind illegitimate families.

Stigmatisation and discrimination against women is particularly strong. Women should be better educated and given income-generating means. Women need to be empowered and provided with information on their rights and possibilities.

In South Africa and Kenya, PLWA still battle to buy insurance for their medical needs, houses, children etc. The high unemployment rate makes it easy for coerced pre-employment testing to take place. A positive HIV test still excludes you from many benefits that others enjoy. In Uganda, where the AIDS policy is considered as a success story, recently the government has made the HIV test compulsory for promotions in the army.

3. How are PLWA going to work in this stigmatization attitude? Who has to break the silence? Religious people infected themselves, HIV/AIDS activists or PLWA? Meetings and discussions should be organised to make people aware of the PLWA situation and to change the trend of negative thoughts against them. At the same time of condemning discriminating practices, we should build on the successes and work on the challenges such as the stigma and discrimination that still exists.

Non-PLWA and PLWA groups need to work together to advocate for the implementation of services and policies needed to enhance the quality of life of PLWA. If we want to make some progress in fighting for PLWA rights, and destroy the intense stigma still associated with HIV/AIDS, it is time to break the barriers and silence between the two camps.

To strengthen the PLWA is not enough for reducing stigmatisation, the community has also to be involved. Community’s opinion leaders should be engaged in national strategies aiming to break the silence on HIV/AIDS and therefore have their commitment for the prevention of new infections in their own communities. Moreover, all those involved in the medical profession should be educated fully on the significance of the role they play in overcoming the stigma connected with HIV/AIDS.

A more positive attitude should be expressed in the propaganda used for educating the public. For example, it should portray the importance of having the acceptance of families, employers, friends and society. It needs to convey the message that a PLWA is still a person who needs love, encouragement and comfort from those around them. This is a positive way that we can overcome the stigma and discrimination of HIV/AIDS, by accepting the PLWA as a real person. HIV/AIDS has to be given a human face, not number or percentage.

4. Discriminatory policies must be condemned because they violate the basic International Humanitarian Laws, the International guidelines on HIV/AIDS and Human Rights, and the different national constitutions and HIV/AIDS policy regulations. Moreover, these practices have a negative effect on the prevention side of the programmes.

In South Africa, the relatively new legislation has already been tested in courts by citizens who happen to be PLWA and they came out victors (the South African Airways cases). These mechanisms of redress are unfortunately inaccessible to many citizens.

PLWA are generally not aware of their rights in regards to HIV/AIDS. Almost every African country has a national policy on HIV/AIDS and all major organisations and companies have policies concerning their employment status. But most employees are not aware of the existence of these policies. An exerted effort must be made to let all people know their rights in order for them not to fear loss of employment due to their HIV+ status.

All those involved in the struggle against AIDS should put pressure on African leadership and Governments engaged in discriminatory practices to end it forth with, and instead come up with clear policies that don’t discriminate against PLWA.

5. The PLWA and their support groups have to play a leading role in the ADF 2000 to show an example to others and to start the process of them being publicly accepted.

ADF2000 should be instrumental in initiating a campaign, which will help stimulate acceptance, encouragement and support for PLWA. ADF should help to advance the notion of living openly with HIV/AIDS amongst all people particularly African political and community leaders. Somehow countries, insurance companies, employers, and etc., would feel pressurised to create enabling environments for people living with HIV/AIDS if some prominent people were to own up to their sero status and take leadership in response to the HIV/AIDS epidemic.

The ADF must have a dynamic impact on all those who attend. They must be able to take back to their respective countries some tools that can help them in their struggle to overcome the stigma and discrimination in order for them to empower the PLWA and address the challenge of their leadership role.

Testing

1. While the idea of regular voluntary blood screening should be supported, any mandatory testing to things like job recruitment or promotions should be condemned. Individuals must feel comfortable in talking about the virus and the importance of being tested. Pre and post counselling must be available. PLWA should be able to sensitize others to the advantages of being tested and relay a message that it is OK.

Most people refuse or fear getting tested until they are very sick. Or they don’t have the opportunity to be tested. We need to ask why should they be afraid to be tested, has society made it an unaccepted thing to do? In finding the answer to this question we should then be able to address how we can change this attitude.

Health and psychological support

1. In order to involve and strengthen the commitment of PLWA, the psychological support and the medical system around them is essential and has to be improved. The medical support should include facilitating the provision of ARV or, at least, taking care of opportunistic infections. Alternative methods such as high potency vitamins, protein supplements and medicines for opportunistic infections must also be promoted and used.

2. African governments should improve the basic health infrastructure of their countries. Each of them should develop it in its own way. Nevertheless all over the continent, medical personnel, nurses and doctors, should be engaged in the fight against HIV/AIDS. PLWA that are sick should be able to go in any health centre and being treated as needed. For the moment the situation is different and PLWA can not find treatment in every health centre. This is why PLWA associations should intensively advocate for including this issue in the national strategy on HIV/AIDS.

In Africa we do have a very important resource in the form of family members and close relatives of PLWA, which we have not quite tapped. Families also have to be educated, for if they are aware they are very helpful towards the infected person.

3. In Cote d’Ivoire during the last four months, there has been a breakdown in the supply of antiretrovirals for HIV infected people who took part in the drug access initiative supported by UNAIDS. The shortage, that has already caused the death of about 90 people, is essentially due to the irresponsible manner of the Government on the one hand, and to the lack of effective planning during the implementation phase of the initiative.

This is indeed a sadistic example of scientific and human carelessness and the PLWA network in Cote d’Ivoire has undertake a protest in the form of a hunger strike. In the meantime associations are exploring the possibility of suing the Ivorian authorities for crime against humanity and laxism which led to the wilful killing of the victims.

PLWA Associations

1. The PLWA associations in Africa don’t have any institutional support. Therefore and because of their lack of financial resources, they don’t have adequate premises where to work and they can’t implement their own programme. Moreover, they don’t coordinate enough their activities. To these problems, we have to add the issue of remuneration of the volunteers working in the associations.

2. PLWA associations should be encouraged to create income-generating activities. They should also benefit from financial support. Based on this, PLWA associations should also be given the possibility to manage and have the responsibility of a budget. Being the beneficiary of their work, they are able to protect their own achievements.

 Orphans

1. Around 11.2 million children in the world are orphaned by AIDS, of which 95% are in Sub- Saharan Africa. These numbers are also predicted to escalate in the future. These children are the neediest of the needy. They have often cared for parents and younger siblings, who may have died in succession. Whilst struggling to take over adult roles, not only do they have to cope with their own grief, but they also often face severe poverty as well as stigma and discrimination. Some, who grow up alone or are reared in psychologically damaging and inappropriate institutions, are alienated from their families and communities. Unless appropriate action is taken on a large scale, the magnitude of the AIDS orphan crisis threatens to destroy African social support systems, with far reaching irreversible damage to development aims.

2. Many successful projects supporting extended family and community care of children in need could be cited. Those projects have been successful in avoiding the unnecessary separation of children from their families and communities, and in promoting an awareness of their needs and rights. Such initiatives now need taking to scale.

3. The magnitude of the AIDS orphan crisis is such that only if international organisations combine to form a concerted effort to develop culturally appropriate and cost effective services to support families and communities in the care of AIDS orphans, is there hope of averting a disaster of epic proportions.

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To know what you prefer instead of humbly saying Amen to what the world tells you you ought to prefer is to have kept your soul alive

Background

In August 2000, the ADF Secretariat identified a number of young people to participate in the Youth Focus Group. Sisonke Msimang, the Co-ordinator of the Youth Focus Group, was selected shortly thereafter.

The formation of the YFG was followed by a meeting of the Technical Advisory Committee (TAC),a group of approximately 40 representatives of stakeholder groups including various UN agencies, members of civil society groups and focus group representatives.

Four members of the YFG were present at the TAC. Their collective contribution paved the way for a restructuring of the role of the YFG, and a broadening of its terms of reference (see appendix 1). It was agreed that it was critical that the ADF 2000 take the voices of young people seriously. In order for this to occur, it was agreed that an inclusive, meaningful process that encouraged the participation of young people would be necessary.

As such, the TAC gave the YFG the mandate to organise a series of regional workshops which would examine the issues facing young people in East, Southern and West Africa, vis a vis HIV/AIDS and leadership.

In part, this decision to convene regional workshops was based on the reality that for many of the members of the YFG, access to the Internet was proving quite difficult. In addition to the general challenges of connectivity facing most people living in Africa, young people were clearly facing the added structural challenge of having less access to computers and Internet services precisely because they were young. Some YFG were not office based, and many of those who were, were not senior enough in their organisations to have direct access to computers on their desks.

Furthermore, as one YFG member pointed out, computers are often seen as necessary tools for the ‘real work’ that adults carry out. The lack of seriousness with which youth organisations are regarded is demonstrated on many levels. In the example the young man on the YFG gave, he indicated that ‘donors would rather give us typewriters than computers. Computers are for serious businesses, not for young people who can’t be trusted to be responsible, so we are offered the equipment that will not help us to progress.’

Due to time and capacity constraints it quickly became clear that the YFG would only be able to convene one meeting. It was agreed that this meeting would bring together all YFG members as well as additional representatives from countries that had demonstrated strong responses to the epidemic, and/or those that had demonstrated particularly weak responses.

Therefore it was agreed that a YFG Regional Preparatory Meeting on Youth and AIDS would be convened in Pretoria. After much to-ing and fro-ing, and a postponement and the meeting eventually took place from October 30 – Nov1, 2000.

The following is a summary of the key issues that YFG members raised during the workshop. These issues have fundamentally shaped the way in which the ADF Youth programme has been structured. Of equal importance, has been the nature of the epidemic itself. Its speed, the extent to which it has particularly affected girls and young women and the opportunities it throws before us in terms of a response that brings out the best in humanity, are exciting, daunting, and worthy of the complete attention of all youth leaders. The conversations between the young people who attended the workshop, as well as the comments that were exchanged via e-mail, attest to a deep and abiding sense of awe, humour and urgency at the tasks that lie ahead.

Who’s Young?

It was agreed that the Western definition of youth does not apply in most African contexts. Young men and young women in particular face higher rates of unemployment than other segments of the population. Therefore, where adulthood is marked by the lability to earn and income and support a family, youth often extends well into the 30s.

The YFG agreed that for the purposes of the ADF 2000, the UN definition of youth, which spans 16 – 24, would not be sufficient, as many African states have significantly broader definitions of youth. It was agreed that ‘youth’ would be defined as beginning at 14 and extending until 35. However, given the exclusion of young people aged 14 – 24 in most decision-making structures within the youth sector, it was agreed that young people in this age range would be the priority for the conference, particularly in terms of representation.

Are we all the same?

The term ‘youth’ is a generic word that is used to describe a very broad population. The YFG discussed the fact that young people are both male and female, they represent a range of ags, some have children and are married, some live in poverty, while others are middle class or belong to the elite, some are in wheelchairs, some are employed, etc. The YFG felt is was important to remain mindful of these differences. In particular, the group noted that where these differences resulted in a vulnerability to HIV infection for some groups of young people – based on their difference from other young people – it would be necessary to take these differences in power, and privilege into account. In particular, the importance of recognising the inequalities between young women and young men, and between young women and older men, was noted.

What needs to Change?

YFG members discussed the key challenges facing young people’s ability to fight the epidemic in terms of Prevention, Care and Support, Information and Media and Policy and Research. They brainstormed the following list:

War

Lack of resources to purchase condoms and IEC materials

Condom use not accepted by youth

High cost of condoms

Doubts about the quality of condoms

Misinformation from teachers and community leaders about AIDS

Youth do not believe AIDS exists

Information regarding PWLHAs is not allowed

Lack of funds to employ educators

Lack of adequate communication and networking within the country

Lack of recognition of youth in stakeholders meetings

Volunteer spirit is lacking

Language barriers and illiteracy

Maintaining skilled people

Transitory nature of youth as a stage of life

Limitations as to what can be discussed in public

High cost of publicity

Where good policies exist implementation and dissemination is difficult

Behaviour change is difficult because of lack of hope, economic choices,

Social stigma attached to HIV positive status

The YFG then fleshed out this list and shaped into specific challenges that they wanted to prioritise for the ADF:

a) Challenge: WAR

War impacts on the socio-economic situation, including:

Unemployment

poverty

poor nutrition

education

War also has profound implications for spread of HI Virus because it has been found to encourage an environment in which rape is commonplace, and in which familial and community relationships are often disrupted if not severed. In addition, war often results in forced migration, which has serious implications for the spread of the virus.

Challenge: LACK OF INFORMATION

Many young people lack information that will assist them in changing their sexual behaviour. At all levels of media, not enough effort has been put into ensuring that information is translated into local languages and reaches rural youth. Key media channels include radio, TV, newspapers and posters. Target groups for specific tailored information should include:

- Youth – boys and girls

educators

religious leaders

parents

teachers

state and traditional leaders/authorities

NGOs

Challenge: ACCESS TO CONDOMS

There is a lack of resources on both the levels of African governments and members of the general population. Condoms are expensive, and in most countries are only available in chemists. Where they are available for free, the supply is inconsistent, methods of delivery are unsystematic and the quality of the product is often poor because the condoms are kept in inappropriate conditions.

Leadership Challenge: Finding innovative ways of getting condoms distributed by looking at African contexts as an opportunity for creativity rather than as a threat.

Seeking solutions that push leaders to engage with manufacturers on lowering the cost of condoms.

Challenge: SOCIAL STIGMA AND HIV/AIDS

The widespread discrimination against PLWHAs is unjust and creates a hostile environment for attempts to treat people living with the virus so that they can live longer, healthier, more productive lives. All human beings have the right to a life free from harassment and violence, and governments have an obligation to provide an environment free from violence. De-stigmatising HIV is therefore, very important for fostering democracy.

There is a general inability to deliver counselling, medication, nutritional advice, etc. in many of the health systems of African countries. Leadership needs to be taken to leverage support for institutional responses to HIV by building on and critiquing the community-based models that have been developed as well as encouraging systematic attempts to formulate public-private sector partnerships. In particular young people must be brought into assisting with the care and treatment of PWAs. Where National Youth Service Programmes exist, they can be used to get young people into the care and support side of HIV programmes, rather than solely focusing on prevention.

Young people have little policy and legislation to protect them in terms of their rights to sexual and reproductive health and information. An understanding of their rights can only be advanced if they are aware that they can legal protection if they are harassed by clinic staff, or if they are lobbying for the provision of condoms, information, etc. A number of YFG members said that their countries had Youth Health Policies or Youth AIDS Plans. It was agreed that encouraging youth to youth and South-South co-operation would assist in this arena.

How do We Make the Change We want to See?

YFG Members agreed that each of these priority areas would be integrated into the Youth Component of the ADF Programme. It was agreed that the ADF 2000 would serve as critical opportunity to claim a space for young people. It was agreed that the fight against AIDS cannot continue to take place without structured and systematic participation of young people at the highest levels of decision-making at national and international levels. The ADF was seen as a first step in a process of demonstrating the dedication of young women and men in Africa to providing a different, more dynamic and more open-minded leadership on HIV/AIDS than we have seen thus far.

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DIASPORA SUMMARY

This summary focuses on the role of Diaspora networks in HIV/AIDS prevention. It is a collection of ideas from participants in the focus group discussions. In order to understand how Diaspora networks can be used in fighting HIV/AIDS, it is important to begin with a working definition. African Diaspora network can be broadly defined as an extended group of African people living within and outside the continent and share similar interests or concerns that interact and remain in informal contact for mutual assistance or support. As mentioned by many contributors, the purpose of the Diaspora network would be to enumerate those groups who not only have a vested interest in the fight against HIV/AIDS in Africa, but more importantly those who might express a willingness to translate their interest into something more tangible.

Over the past two decades, HIV/AIDS has inflicted enormous pain, suffering and death throughout sub-Saharan Africa. It is very evident that HIV/AIDS affects everyone regardless of race, ethnicity, age, socioeconomic status and geographic location. Several studies show that the impact of the disease can be seen across all sectors including health, education, agriculture, and mining sectors. Like many other infectious diseases, sub-Saharan Africa bears the greatest burden, with 70 % of the global population with HIV or AIDS.

The role of Diaspora in fighting HIV/AIDS is increasingly receiving regional and international attention. Many people view Diaspora as a promising strategy for HIV/AIDS prevention for many reasons. First, there is no doubt that Africans in the Diaspora network are in a better and privileged position to make significant contributions to the health of the continent. It is obvious that most of them are living in wealthy countries where mobilizing the needed technical and financial resources are easier. Secondly, Diaspora network can play a vital role in gathering and disseminating relevant information on HIV/AIDS. In addition, the network can collect research results and apply them in the fight against HIV/AIDS. Finally, the Diaspora network can organize itself to lobby respective governments, multilateral and bilateral institutions, NGOs, foundations, and other institutions to be part of the solution.

The African world as we know it and of which we are a part, is threatened by complicated web of problems that stem from HIV/AIDS. People of African decent are vested with a moral commitment to come together and fight HIV/AIDS. They are the only people in the NORTH who have much idea about what is needed in Africa and where it is needed and who can handle it. It is not cost effective for NORTH folk to go SOUTH with a small amount of money to find suitable beneficiaries. Every African in the Diaspora has a community that could benefit from external resources and do a lot of good with quite a small amount of financial or material assistance. From Ethiopia to Senegal and from Libya to South Africa, Africans must come together beyond the superficial boundaries of nationality, ethnicity, and religion to make that happen. There is strength in numbers, and there is power in our combined intelligence. The Diaspora network must focus on proposing potential solutions for preventing HIV/AIDS in Africa.

Individually, in the Diaspora we must take responsibility for harnessing the pertinent knowledge that may flow from each of our multiple affiliations and associations and bring it to bear upon the problem. Across academic disciplines each of us can make valuable contributions. We strongly believe that it is incumbent upon Africans to establish the priorities, the action plan, and to direct the flow of assistance as it comes. Those charged with this responsibility must clearly understand that there is little margin for error. The world is watching and waiting for an opportunity to seize control.

Many critics agree that the HIV/AIDS front is too broad and our arsenal of interventions too few. The Diaspora network must re-evaluate lessons learned in countries that have made progress against AIDS. Obviously, we should begin with Diaspora interventions that have worked within the African context. We know very well that implementing a smaller core set of cost-effective activities at a community scale could have a huge sustained effect on the whole epidemic.

Research shows that there are very few HIV/AIDS Diaspora networks that can be replicated, intensified or scaled up. Here are few examples of groups and individuals that are trying to facilitate the Diaspora initiatives:

In 1992 Africans, in particular Ethiopian health professionals residing in Sweden considering the deteriorating health situation in their home land, got organized and formed an association called the "Association of Ethiopian Health Professionals in Sweden", (AEHPS). These Ethiopian professionals through their association were/are primarily assisting to the improvement of primary health care in their home country by canalizing financial resources from Sweden back to Ethiopia. This association is one of its kind to the Ethiopians in the Diaspora which has brought significant differences to the health-development of the targeted community in the country. Currently, the Association is participating on the fight against HIV/AIDS in Ethiopia.

The Faith Tabernacle Baptist Church of Chicago, USA has shown interest in contributing to the struggle of HIV/AIDS. Pastor Donald Sharp has explained how African Americans plan ways to handle the pandemic. They are ready to play a key role by financing and assisting structures that are working on this urgent struggle.

50 Lemons, a small US–based group initiated its first project in Ethiopia and is planning to involve the entire African Diaspora here in the U.S. to respond to the HIV/AIDS related needs of the many other African countries.

The AfriFund goal is to create a framework so that Africans in the Diaspora can team up to deliver funds to communities in Africa and help build a network in Africa that is making use of AfriFund resources and also serves to validate their use and the results achieved.

Perhaps, intellectual Diaspora can be a promising strategy for HIV/AIDS prevention, but it remains to be seen. Clearly the Diaspora that we build today must not dissolve when the ADF conference ends. If anything the shared knowledge the conference confers upon us should reinforce our commitment to fight the epidemic. The technology of modern communication is at our disposal. It is a tool we must liberally employ to remain bound together, because what we are up against will require the concerted efforts of many for the foreseeable future.

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3-7 December 2000, Addis Ababa, Ethiopia

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Last updated: December 28, 2000 15:58.