Bangkok AIDS Conference
Re-Think, Re-Tool and Scale Up: Think Globally, Act Locally
Richard Burzynski, ICASO
An enormous amount of re-tooling is called for in this discussion paper. At the same time, it is important to reaffirm advocacy as one of the cornerstones for social change. Our experience indicates clearly that advocacy plays an important role in encouraging, motivating and cajoling our governments and institutions to respond. Advocacy in all of its forms - from street demonstrations to boardroom politics - has been instrumental to move officials and institutions to action throughout the war on AIDS.
With increasing actors and resources becoming available, the challenge to influence structures and institutions is greater than ever before. The community sector can cite many examples of how their advocacy has shaped the response: from the Treatment Action Campaigns (TAC) effort in South Africa to put treatment as a component of the country response, to the Fund-the-Fund Campaign which galvanizes CBOs and NGOs to lobby their governments to pay their fair share of the Global Fund costs. To be effective advocates, the community sector must remain well informed and articulate when shaping policy decisions.
However, we also know that changing situations and changing governments can quickly erase many policy and program gains. The community sector is well aware of the challenges we now face: from seeing the war on AIDS usurped by the war on terrorism to new bilateral funding aimed at abstinence rather than condom promotion. We need to continue to advocate strongly, without equivocation, that gay men, men who have sex with men, sex workers, intravenous drug users and prisoners are visible in our responses, and that those who work with these groups are not excluded from accessing resources and other necessary services. This approach needs to be broad-based and inclusive of the most vulnerable groups to avoid marginalization and discrimination.
The need for our sector to intensify their advocacy efforts has never been greater, particularly as our environments shift and change rapidly. Issues related to resource allocations, greater coordination and collaboration at country level, improved linkages between AIDS and other issues, greater involvement of the community sector to participate fully in the conception, implementation and evaluation of programs and services all these issues require a well-informed and resourced community sector to ensure that efforts meet the needs of those most affected.
Accountability and Transparency
The community sector has repeatedly called for greater accountability and transparency in decision-making by our governments and multilateral institutions. Alongside this call, we need to monitor and hold accountable these state actors and institutions as they begin committing to an expanded response. However, there is a growing realization that we in the community sector need to re-tool their thinking and processes to incorporate a new value to frame this call for accountability and transparency: what we expect of others we should willingly do ourselves.
As the community sector and other non-state actors continue to question the decisions and processes of our governments and institutions, we must also re-tool our own structures and processes to ensure that we too are accountable to the people we serve, and that our decision-making processes are transparent. In brief, we must not shy away from questioning ourselves and challenging our assumptions. As necessity dictates a scaling up of the community sector, we will experience growing pains, and along with them will come more and more difficult questions: Are the unmet needs of those infected and affected still at the heart of our work? Can we create effective prevention programs for migrant populations? Will faith-based organizations be able to work with social activist groups? Will sound accounting practices become standard for CBOs and NGOs? Can we stop stigma and discrimination even within our own communities? These and other issues and questions need to be answered with more courage and more candor than ever before.
One key development on the horizon is the creation of an NGO Code of Practice [iv]. Developed by CBO and NGO representatives, the document sets out to explore the difficult issues related to program and financial accountability: promoting adherence to minimum operating standards, establishing standards in the delivery of their services, and incorporating both human rights and public health principles. Eventually, the community sector and international NGOs will be asked to endorse and sign on to the Code that we hope will create credibility for those who adhere to its principles.
Alongside our accountability, we need to verify our intentions with transparent processes that are open to scrutiny and critique. When we have both elements working together, trust can be established with appropriate systems of verification.
The response to AIDS needs to change rapidly from governments and their institutions to the community sector and other civil society actors. The community sector needs to re-think and re-tool their own organizations and ensure that our own institutions, particularly our networks at national, regional and global levels, respond to the new opportunities before us.
There are many detractors that see an AIDS industry that the community sector propagates to gain financial stability and career mobility. Our credibility is at stake and the need to make changes has never been greater. We can no longer do business as usual or we run the risk of becoming obsolete and ineffectual the two most dangerous obstacles to stopping AIDS and alleviating the impact that AIDS wreaks on our communities.
People living with AIDS and those communities most affected will ultimately judge whether or not we are successful in doing things differently - we need to be honest in our reflections, and re-think and re-tool in order to scale up.
Richard Burzynski, Executive Director
International Council of AIDS Service Organizations (ICASO) Email: firstname.lastname@example.org
[i] Community sector is defined as non-governmental organizations (NGOs), community-based organizations (CBOs) and AIDS service organizations (ASOs) operating at national level.
[ii] UNAIDS Commitment to principles for concerted AIDS action at country level was affirmed at a meeting of donors and multilateral agencies in Washington DC on April 24, 2004.
[iii] Historically marginalized people and groups include: men who have sex with men, intravenous drug users, prisoners, undocumented migrants, and sex workers.
[iv] NGO Code of Practice refers to CBOs, ASOs and NGOs.
Generation skills transference
by Shaun Mellors
Many of the so called first generation PWAs and Community Leaders got involved in the struggle with limited experience, knowledge and know how, but soon developed an incredible wealth of experience and expertise, primarily founded in the animal instinct of responding in order to survive. Sadly though, many (far too many) of those first generation leaders are no longer around - some have passed on, others have moved into different fields, some are burnt out - and we failed to ensure that there were strategies in place to not only capture this wealth of experience and expertise, but to pass it onto the so called 2nd and 3rd generations.
We have a void between understanding where we come from, understanding the issues and a skills gap between first and second generation. We have a hesitancy from 1st generation activists to listen to new ideas, strategies, and attempts from 2nd generation activists, but we have an opportunity to ensure that first generation activists can hand over, have the resources and support to do it, and are held accountable to do it.
The lack of GIPA (Greater Involvement of People Living with HIV/AIDS) within our own community
As NGOs and community groups/advocates we constantly advocate the principle of GIPA to the outside world, but in many instances do not apply or implement GIPA within our own organizations. We still struggle to see people with HIV/AIDS within our organization as more than just a recipient of service, or the face of the epidemic, or a committed volunteer. GIPA is still seen by many of us as a principle that has to be applied, as opposed to something that should already be integrated.
We need to ensure, and be held accountable - as a sector - that we ourselves move beyond the principle, that yes, although we all recognize and understand that HIV is not a qualification, but a very important and valuable experience, we the community sector (and other partners), have to commit to developing and using that valuable experience to indeed become more of a qualification - to ensure that PWAs are seen and heard as program managers, counselors, volunteers, directors, advocates and activists. And PWAs in positions of leadership have to ensure and be held accountable for, ensuring other PWAs also have opportunities, that the skills that they acquired are also used to empower others, and that there is a commitment to ensure the development and support of different, varied, strong and powerful PWA voices at the various international platforms.
There is increasing efforts and pressure to ensure the appropriate human capacity for the roll out of the ARV programmes, and rightfully so. However, we need to be careful that we do not (to use the old cliche) rob Peter to pay Paul - as some examples are already showing that health care workers are being pulled away from other primary and public health care services to work on the roll out program. This is not only causing an imbalance in health care services on the national level, but could also lead to further stigmatization of people with HIV/AIDS by members of the public as scarce resources and capacity are being taken away, and weakening already weakened health structures.
We need to advocate for programmes and structures to be set up in already existing health care facilities, we need to integrate the relevant programmes into already existing services, and we need to support and acknowledge the difficult and stressful role that health care workers are playing in this epidemic. We as patients need to be educated, responsible and committed in supporting the implementation and integration of ARVs.
Confronting our own marginalization
We as the community sector need to confront our own marginalization within our own organizations as a matter of urgency. The amount of racism, sexism, homophobia etc within NGOs is startling and concerning and it is critical that we do deal with the plethora of issues that we educate, teach or advocate about internally. We tend to forget our own staff's needs and attitudes as if it is only something that we need to do on the outside.
And finally the paper concludes with "People living with AIDS and those communities most affected will ultimately judge" us. I think, and hope, that in the next 20 years of fighting this epidemic we move away from the notion or perception that it is only people living with, or affected by this disease that can hold accountable, or that has custodianship of this disease.
Yes, of course living with this disease is a challenge, and painful, emotional and scary - but surely we should equally concerned about how our colleagues, partners and governments hold us all accountable for our response. The concluding statement in itself creates an imbalance - that people with HIV and those affected are recipients of service or recipients of representation or recipients of program delivery or of good/bad governance and therefore we need to judge on election day.
Citizens of a country judge their governments harshly (mostly), or try and hold their governments accountable for not delivering. Citizens are not (necessarily) part of making final decisions or developing policies or allocating budgets.
But we are more than just voters, we are more than just recipients - our responses and actions should be as equally important as anyone else's, we should acknowledge that we all have different roles to play and that we should not be afraid of holding accountable or being accountable, and should all judge when it is appropriate to do so. Can one imagine concluding statements such as: (Community Rep) "Our Governments and the UN system will ultimately judge us"; (PWA representative) "The NGO sector will ultimately judge us and hold us accountable"; (Religious leader) "The sex workers, IDUs and gay men are ultimately going to judge us".
Shaun Mellors, HIV Consultant, PWA, AIDS Activist Email: email@example.com
Making it work - greater involvement for people with AIDS
During the oral abstract session on "Greater Involvement of People Living with HIV/AIDS (PLWHA)" early on Monday afternoon, some inspiring speakers made incredibly touching presentations.
Among those who touched the hearts of delegates in attendance was Terje Anderson from the US National Association of People with AIDS (NAPWA-US), which advocates for human rights for all people living with HIV and AIDS.
Another notable presenter was Jacob Peters from Canada. Mr Peters's dramatic autobiographical presentation moved even the most hardened delegates to tears. Afterwards a member of Uganda's parliamentary standing committee on AIDS asked him if he could bring his presentation to other countries in person, to teach others to appreciate the damage AIDS has done and is still doing in the world today.
Terje Anderson began by noting that "for far too long, we have paid too little attention to the issue of meeting the prevention needs of people living with HIV/AIDS. HIV prevention was something that was done for HIV-negatives to keep them negative, ignoring the central role of PLWHAs." Successful strategies for preventing new HIV infections must engage PLWHA as partners, he said.
Mr Anderson emphasised that, "as people living with HIV, we welcome the enhanced interest in prevention service for PLWHAs". As prevention projects are implemented, several important principles must shape these efforts, he said. These principles were developed in a series of meetings with diverse groups of HIV-positive people from around the US, and therefore represent the perspective of those who will be most directly impacted.
George Wainaina from Kenya HIV/AIDS Business Council presented a case study on the greater involvement of people living with HIV/AIDS. The study explored new ways of giving HIV/AIDS a "human face and voice" in the workplace. His reasons for involving PLWHAs included helping others realise their own negative attitudes towards PLWHAs and persuading others that those with HIV can lead productive lives. He also wanted to encourage people to go for voluntary counselling and testing, and to face the future courageously.
Mr Wainaina spoke about four types of involvement:
Mr Wainaina said that his organisation specifically recruited PLWHAs so as to emphasise the unique ability of people with AIDS to contribute to the global response to epidemic. One position to be filled was of Greater Involvement of PLWHA (GIPA) field worker. The staff member was then attached to a large farm with 16,000 employees and 80,000 dependants. Today, the Business Council is looking at employing a GIPA HIV/AIDS co-ordinator who will be charged with over-all improvement of PLWHA management within the Council
The success of this initiative indicates an equitable set of policies and real support from management, and there are clear objectives and plans for progressive implementation.
The direct benefit of this has been a positive response from the other employees - for example, more people turning up for testing and counselling - and increased interest in peer education programmes. Some employees have been empowered enough to be open about being HIV positive. This all suggests a reduction in stigma - one of the many challenges that PLWHAs have to battle daily.
HDN Key Correspondents Team
The lesson that policy work demands the full participation of affected people, and the need for affected communities to be at the center of the responses to AIDS, seems to have been forgotten by our leaders.
-- Dennis Altman, Jonathan Mann Memorial Lecture
Professor Dennis Altman has been a leading figure in the arena of international HIV/AIDS politics for the past twenty years. He delivered the Jonathan Mann Memorial Lecture at Wednesday mornings plenary session,
Professor Altmans theme was structural interventions and vulnerable communities, particularly men who have sex with men, injecting drug users and sex workers. But he was not confined by this topic. He said of the late Professor Jonathan Mann, in whose honour the lecture is named: One of the things I liked about Jonathan was his willingness to offend when doing so would confront people with the consequences of their actions.
Professor Altman pointed out that the tendency to blame rich countries and pharmaceutical companies for the failure to stem the rising tide of AIDS ignored that the fact that even poor countries can afford to support good prevention efforts, as Uganda and Cambodia remind us. More to blame, he said, was the failure of governments and religious leaderships to face up to the practices that facilitated the spread of HIV.
The greatest tragedy of HIV/AIDS is that we know how to stop its spread, and yet in most parts of the world we are failing to do so, Professor Altman said. He cited the deliberate neglect by governments, the unwillingness to speak openly of HIV and its risks, the hypocrisy with which simple measures of prevention are forestalled in the name of culture, religion and tradition, as the major reasons for the continued spread of the epidemic.
Professor Altman was particularly critical of the failure to remember the lessons learned by the gay male community during the first decade of the AIDS epidemic, particularly the need for affected communities to be at the centre of the response to AIDS. He pointed out that this weeks ministerial meeting in Bangkok had no representation from affected communities. The lesson that policy work demands the full participation of affected people seems to have been forgotten by our leaders, he said.
Specifically, Professor Altman called for an end to restrictions on the discussion and promotion of condoms, and an end to silence about homosexuality, sex work and drug use in many countries. He denounced the hypocrisy of countries that pay lip service to consulting with people affected by AIDS while retaining British colonial laws against homosexuality.
As the epidemic grows we have many reasons to be angry, particularly at the hypocrisies of most governments and most religious leaders, Professor Altman concluded. We ignore the ways in which fundamentalists of all faiths perpetuate the gender and sexual inequalities that fuel the epidemic. But anger that is not supported by analysis, and that does not lead to action, is wasted and self-indulgent.
HDN Key Correspondent Team
Family care and support for people with AIDS
At the Global Village of the XV International AIDS Conference, participants from Thailand, the Philippines and India came together to talk about family care and support for people living with HIV/AIDS.
A wealth of experience was shared by participants from Thailand, a country hard hit by the epidemic where the first cases were reported in the early 1990s. Back then, people were dying of an illness denied by the community and by the government. Families were left on their own to find answers to the illnesses hitting family members.
A Thai participant told how families did not have time to grieve in those early days, as neighbours become ill one after the other. There was so much discrimination and stigma that infected people had no access to care from the community or health system. In response, families came together to help one another.
India has had similar experiences. In many cases, HIV positive people have been driven from their homes and left to care for each other.
Prevention was begun relatively early in the Philippines, so cases of HIV and AIDS remained relatively low, as reflected in the national registry of the Health Ministry. Families were prepared early for taking care of sick family members.
In the Philippines, within a decade of the epidemic families have learned how to deal with HIV/AIDS and treat it like any other illnesses. They in fact call it normalising the problem , which has meant a lot of learning by doing.
No country has been spared the stigma and discrimination that are always attached to HIV and AIDS. Many were the challenges shared by the participants during the session. Volunteers from communities were there, but most of them were not totally prepared to handle caring for a sick person, especially within a home setting.
Surprisingly, the participants to the discussion were all youth . They all voiced the need to involve people of their age, as many of those who are infected are young.
Participants all agreed that youth, as the age group most affected or infected by HIV, have the right to be engaged in tackling the epidemic. For them, dealing with it at a later time means excluding them from the response.
HDN Key Correspondents Team
Funding the Donor Response to HIV/AIDS: Why Are the Donors Not Working Together?
Tapping into the Absorptive Capacity in the Community
Gregg Gonsalves, Gay Mens Health Crisis New York, USA
Monday, July 12
Session Room C
Good morning. My name is Gregg Gonsalves. I am the Director of Treatment and Prevention Advocacy at Gay Mens Health Crisis in New York.
Here we are at another international AIDS conference, another in a long chain of these meetings, which so often have been unremarkable in their similarity and their failure to provide a new vision and the momentum that will finally turn the tide against this epidemic.
The exception for me was our gathering in Durban, South Africa, four years ago, where the Treatment Action Campaign and other South African activists such as Judge Edwin Cameron, rang the clarion call for access to treatment that was soon heard round the world.
Now 23 years into this epidemic, the quest for access to treatment is now undeniable and unstoppable. We will eventually have treatment for all those who need it and pressure from activists and people living with HIV around the world are here to guarantee that.
However, the news is not good. The number of new infections in the past year as reported by UNAIDS are a new high, and the numbers of people on antiretroviral treatment or those with access to treatment and prophylaxis for opportunistic infections and tuberculosis are shamefully low, despite four years of high-minded rhetoric from governments, UN agencies and other donors.
I am particularly saddened and angered by the actions of my own government, which has poisoned the debate on access to treatment and the fight against AIDS by making spurious claims about generic drugs and the effectiveness of condoms, by attacking prevention and research programs that talk frankly about sex and drug use, by defunding reproductive health programs that offer a full range of choices to women. The United States Global AIDS Coordinator Ambassador Randall Tobias and President George W. Bush, seem too often to be answering to their constituencies in the pharmaceutical industry and extreme right-wing of the Republican Party rather than to the needs of people with HIV/AIDS and those at risk around the world or to the standards of scientific evidence or proven public health practice. Ambassador Tobias may deny these charges but the public record is clear.
I have been asked to talk about the absorptive capacity of the community. Let me be clear-I think it is the responsibility of governments around the world to care for their people, to provide the services and other programs they require. The scale-up of services through the public sector is the key to controlling the epidemic. However, the community has always played a key role in the response to AIDS, all too often though filling in where governments have reneged on their duties to people with HIV/AIDS and those at risk. When all governments finally and fully assume their responsibilities in the fight against AIDS, we will still provide a vital role in the fight against the disease. A true partnership between communities and governments that puts people with HIV/AIDS at the center of the design, implementation and evaluation of AIDS programs is essential to the success of these efforts around the world. We know what we need, we have the trust of our fellow people with HIV/AIDS and of marginalized communities at risk, and we know what works and doesnt work. The term AIDS community is a catch-all phrase and needs some definition here-I am not talking about all non-governmental organizations at work in countries, but those run by and for people with AIDS at the local, provincial and national levels.
However, the involvement of people with HIV/AIDS and the community in AIDS programs has largely been lip service for the past 23 years. While we have fought to create programs to take care of our own people, we have often done this without the support of our governments and leaders, or where the support was forthcoming it was grudging and insufficient or burdened with conditionalities from donors and international NGOs. The notion of GIPA-the greater involvement of people living with HIV/AIDS has been for too long just empty rhetoric. That was all too clear last night when Prime Minister Thaksin and the Secretary General left the opening ceremony with most of the delegates in tow before my colleague Paisan Suwannawong from the Thai Drug Users Network made his remarks. We need to move on to the next step and truly capitalize on what communities have to offer. How do we do this?
First, we need to solve the mystery of missing information. There are thousands of community organizations, some large, some very small, doing incredible work around the world, some with very little support--from the Thai Drug Users Network and the Thai Treatment Action Group here in Bangkok, or the Treatment Action Campaign in South Africa, the Positive Womens Movement in India, Blue Diamond Foundation in Nepal, Vivo Positivo in Chile, Agua Buena Human Rights Association in Costa Rica, Positive Movement in Belarus, the All-Ukrainian Network of People Living with HIV/AIDS, the list goes on and on I hope representatives of many of these groups will stand up and talk about their efforts following Dr. Feachems speech--I cannot do justice to their accomplishments in this short talk. We need to document this work and describe it and catalogue it, so that what has been invisible takes shape and form for our governments, donors, and ourselves. Recently, a coalition of treatment activists from around the world met with WHO, UNAIDS, and the World Bank. These agencies have agreed to help us to mount a scoping exercise that will start to solve the mystery of missing information-that will reveal the tremendous work and capacity in the community sector around the world.
Second, we need to solve the mystery of political awareness. If there is so much capacity in the community, why havent governments tried to tap into it as of yet? Documenting the work of community-based organizations is a first step, but there is a high hurdle in getting governments, indeed even donors and some international NGOs, to acknowledge the role of the community and to work with them as equal partners. We know what a shambles the Global Funds Country Coordinating Mechanisms have been for people with HIV/AIDS and their advocates-its well described in a report by the Global Network of People Living with HIV/AIDS-were simply not represented or are only tokens without any influence on these bodies in the vast majority of cases and the Global Fund has yet to require and insist on our real participation in these processes at the country level. Even at the Board level at the Global Fund, until last week, the community didnt have voting privileges . We need the help of all partners to help build consensus on the country-level for the important role of the community. We need to change the way we do business. This means that bilateral and multilateral donors and agencies, international NGOs and others need to bring community into the discussions on AIDS programming and not restrict their conversations with Ministries of Health. Governments need to bring community groups to the table as well and not only their own para-statal, semi-official community groups, but the multiplicity of voices from the communities in their countries.
Third, we need to reveal the missing lessons of history. While the professionals--the government bureaucrats, donors, public health officials, the international NGOs--may feel some satisfaction in their role in combating the epidemic, the AIDS community has been at the forefront of all the major advances for people with AIDS and those at risk. We developed the concept of safer sex and needle exchange, first started using PCP prophylaxis, set up the first programs to make sure people had the information they needed and the care they deserved, weve transformed the role of patients and forever changed the field of public health. Even the WHOs noble and needed 3x5 campaign to scale-up antiretroviral therapy in the developing world was born out of the struggles of people with AIDS around the world to put access to treatment on the agenda, when so many didnt think it was possible, feasible or wise.
Finally, we need to confront the mystery of legal and policy failure-with all this capacity and skill, with all this history of accomplishment, why are communities still at the margins of the response to AIDS in so many places? My sense is that the professionals again are loathe to accept the role of people with HIV/AIDS as central actors in their own fatethey would rather see them as patients, victims, carriers, clients for technical assistance or charity, rather than as key participants in decision-making on AIDS programs. If this is to change it has to be done by legal mandate or policy prescription both on the international and national levels. Legislation and regulation authorizing national AIDS policy-making needs to ensure adequate and real participation of people with HIV/AIDS and community organizations, with verifiable indicators of this participation. Donors, bilateral and multilateral agencies, international NGOs need to incorporate provisions into their programming and grant-making that lock in community participation in decision-making processes and directly fund community organizations in the developing world to provide AIDS services without Northern or international NGOs or Ministries of Health as intermediaries. The Global Fund has directly funded the Thai Drug Users Network in this country, but this kind of direct and substantial funding to community organizations in the developing world is mostly an exception to the rule. The rules need to be changed.
This all sounds so simple. Document the work were doing, describe our history, build consensus on the country-level for community involvement in AIDS programming, both in service delivery and decision-making, and enshrine this participation in legal and policy frameworks at the national and international levels. Sadly, in 23 years of the epidemic it hasnt been done on a large scale, particularly in the developing world. It takes a commitment to do this and it will take political pressure to move governments, donors, international NGOs, bilateral and multilateral agencies, to finally make good on the promise of the greater involvement of people with AIDS and our organizations in this work. This is political pressure that many of my colleagues will gladly provide as we have little time to lose before the war on AIDS is lost.
Leadership IDUs Statement download pdf
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