ICASO Annual Report 2002

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International Council of AIDSService Organizations (ICASO)

Report

Annual2002


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Founded in 1991, ICASO operates from Regional Secretariats based

on all five continents, with a Central Secretariat based in Canada.

ICASO CONTACT INFORMATION

Central Secretariat

65 Wellesley St., E., Suite 403

Toronto, ON, CANADA M4Y 1G7

Contact: Richard Burzynski

Tel: (1-416) 921-0018 ext.15

Fax: (1-416) 921-9979E-Mail: [email protected]

www.icaso.org

APCASO Asia/Pacific

Malaysian AIDS Council

12 Jalan 13/48A The Boulevard Shop Office51000 Kuala Lumpur MALAYSIA

Contact: M. Puravalen

Tel: (603) 4045-1033Fax: (603) 4043-9178

E-mail: [email protected]

AfriCASO Africa

ENDA Tiers Monde

54, rue Carnot, B.P. 3370Dakar SENEGAL

Contact: Mamadou Seck

Tel: (221) 823-1935Fax: (221) 823- 6615


LACCASOLatin America and the Caribbean

Accin Ciudadana contra el SIDA - ACCSI

Av. Rmulo Gallegos, Edif. Maracay, Apto.

21, El Marqus CARACAS 1071 -VENEZUELA.

Contact: Edgar Carrasco

Tel: (58-212) 232 7938Tel/Fax: (58-212) 235 9215


NACASO North America

Canadian AIDS Society

309 Cooper Street, 4th FloorOttawa, Ontario, CANADA K2P 0G5

Contact: Paul Lapierre

Tel: (1-613) 230-3580

Fax: (1-613) 563-4998

E-Mail: [email protected]

EuroCASO Europe

Groupe sida Geneve,

17 rue Pierre-Fatio

CH-1204 Geneva, SWITZERLAND

Contact: Florian Hbner

Tel: (41-22) 700-1500

Fax: (41-22) 700-1547E-mail: [email protected]

ICASO BOARD MEMBERS:

Richard Burzynski, Executive Director,

ICASO, Canada

Edgar Carrasco (LACCASO),

General Coordinator, Accin Ciudadanacontra el SIDA, Venezuela

Irene Fernandez, Director, Tenaganita,

Sdn. Bhd, Malaysia

Florian Hbner(EuroCASO), Director,Groupe sida Geneve, Switzerland

Paul Lapierre (NACASO),Executive Director, Canadian AIDS Society,Canada

Kasia Malinowska-Sempruch,Program Director, Open Society Institute,

USA

Richard Parker, ABIA/Columbia University,Brazil/USA

M. Puravalen (APCASO), Attorney,

Malaysia

Mamadou Seck, MD (AfriCASO), Senegal

Elhadj As Sy, Africa Fund Portfolio Director,

The Global Fund, Senegal

ICASO IS GRATEFUL FORTHE FINANCIAL SUPPORTWE RECEIVE FROM:

The Canadian InternationalDevelopment Agency (CIDA)

Health Canada

The Bill & Melinda Gates Foundation

GlaxoSmithKlines Positive

Action Programme

Ford Foundation

AIDS FONDS

The International AIDS Vaccine Initiative

Japanese Foundation for AIDS Prevention

(JFAP)Merck&Co., Ltd.

Joint United Nations Programme onHIV/AIDS (UNAIDS)

Inter-American Development Bank

World Health Organization (WHO)


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OUR MISSION:

The International Council of AIDS Service Organizations (ICASO) works to

strengthen the community-based response to HIV/AIDS, by connecting and

representing NGOs throughout the world.

ICASO:

mobilizes communities and their organizations to participate in theresponse to HIV/AIDS;

articulates and advocates the needs and concerns of communities andtheir organizations;

ensures that community-based organizations, particularly those withfewer resources and within affected communities, are strengthened intheir work to prevent HIV infection, and to provide treatment, careand support for people living with and affected by HIV/AIDS;

promotes the greater involvement of people living with, and affectedby, HIV/AIDS in all aspects of prevention, treatment, care and support,and research;

promotes human rights in the development and implementation ofpolicies and programs responding to all aspects of HIV/AIDS.


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MESSAGE FROM RICHARD BURZYNSKI,EXECUTIVE DIRECTOR

2002 was a year of process for ICASO. After a two year exploration into what we have done, continue to do well, and envision doingin the near future, the time for talking about the organization turned into a time of changing it.

We are in a strong place to make changes. Donors have expressed solid confidence in our accomplishments to date, and in our 2001-2005Five Year Work Plan. Some major global policy instruments have been developed to which we can contribute a great deal of support and

expertise. Advocacy and networking, the tools ICASO has been championing for over ten years, are now viewed as essential componentsof the most effective responses to the pandemic at all levels. Now it is time to scale up the work.

It is a good thing, too, because the amount of work facing us all is prodigious. The excellent annual UNAIDS Epidemic Update presentsthe figures better than we can. Suffice it to say, the pandemic is raging out of control in new regions, and communities are struggling to

stay in front of it. Sometimes they dont.

Over ICASOs eleven year history, the evidence has piled up. When communities are informed, when they have the resources theyneed, and when they are involved in designing responses to AIDS, programs and policies are usually more relevant, more effective and

more sustainable. Community groups, comprising those living with and amidst HIV and AIDS, have an impressive track record ofdevising creative and effective responses to local challenges with few resources. Now that donors and policy-makers are recognizingand rewarding that, we are all challenged to build our capacity and expand our advocacy responsibly and strategically.

In this report, we aim to present ICASOs approach to doing just that. What follows are summaries of our work in 2002 organized

in the five programs that make up Year Two of our Five Year Work Plan: The Global Initiative, The Conferences Initiative, Care &Treatment Infrastructure, Policy Development & Advocacy, and The HIV Vaccine Project. All are based on two overarching principles:

they stem from needs expressed by the community-based organizations that ICASO serves, and they are predicated on the protectionof human rights for all people.

Everyone knows that the best product is the result of a well thought out process, and that such a process requires persistence andpatience two qualities that are difficult to balance with the urgency of AIDS, but they are essential if we are to optimize valuable

resources to identify and support the most effective responses.

ICASO is deeply involved in the process of engaging governments in effective responses to their local and national epidemics through

the implementation of the UNGASS Declaration of Commitment. We continue to champion the stories of how the sixteen people fromresource-poor settings, who participated in our Care & Treatment Infrastructure research, were able to access ARVs despite seeminglyinsurmountable odds. And perhaps the most encouraging work in 2002 was the launch of The Global Initiative, pilot tested and rolledout to our Regional Secretariats, and establishing a viableprocess of significantly expanding the capacity of local and regional networks

to further their valuable and sorely under-resourced advocacy work.

It takes time to do the hard work. But we must take that time and use it wisely, by combining our collective sense of urgency with thestrongest programmatic and analytical expertise available.

ICASOs strength comes from our partnerships, our resources and our infrastructure, all of which were developed considerably thispast year. A stronger ICASO means a stronger voice for people living with HIV and AIDS, for the so-called marginalized populations

like sex-workers and injecting drug users and men-who-have-sex-with-men, and for all communities struggling to overpower thismenace in their own neighborhoods.

As our voices get stronger, so will all responses to the pandemic.

In solidarity,

Richard Burzynski


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ICASOs 2002 Programs

THE GLOBAL INITIATIVE:BUILDING THE CAPACITYTO DELIVEROne of the key findings from ICASOs Global Assessment Exercise (which was

completed in 2000) was the organizations need to strengthen capacity to devise anddeliver programs. All the Secretariats noted that staff were routinely over-worked,short of supplies, and that office space and systems were severely limited. The con-

sequence of these capacity gaps was clear: ICASO could not live up to its potentialto effectively bolster the community-based organizations working on the front linesto stop the spread of HIV and mitigate the impact of AIDS.

Thanks to a first-time grant from the Bill & Melinda Gates Foundation this year

and other new expressions of donor confidence, we began to accelerate capacitybuilding in all of ICASOs secretariats by implementing The Global Initiative, the

cornerstone of our Five Year Work Plan. The Global Initiative is designed to buildthe networking and advocacy skills of local and national community-based organiza-tions, by strengthening the capacity of ICASOs Secretariats.

Two approaches were identified to begin the implementation of The GlobalInitiative quickly and responsibly. First, a comprehensive human resources strategywas drafted and adopted. It focused on staffing for the Central Secretariat at the

outset, because that is where ICASO-wide programs are coordinated and aligned.Second, organization-wide program coordination and alignment processes weredevised and launched.

Program coordination and alignment became a principal activity for ICASO in

2002, as each secretariat endorsed the Five Year Work Plan and committed to poolingefforts and resources to implementing The Global Initiative. Four workshops were

convened under the direction of Dalton Truthwaite, an organizational developmentexpert from Deloitte and Touche, in which representatives from all of ICASOsgeographical and substantive areas presented their programmatic aims and

ambitions. Through a series of facilitated exercises, those aims and ambitions weretranslated into a pilot program alignment project that APCASO and LACCASO

agreed to undertake on one program area, Policy Development and Advocacy.Weexpect to cascade the alignment process throughout ICASOs secretariats to create

a fully integrated, mutually reinforcing body of programs.

The Global Initiative was launched with generous funding from the Ford Foundationand the Bill & Melinda Gates Foundation.


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POLICY DEVELOPMENT & ADVOCACY:A GLOBAL VOICE FOR LOCAL COMMUNITIES

Two global policy forums that emerged over the last two years The Declaration of Commitmentthat emanated from the 2001 U.N.General Assembly Special Session on HIV/AIDS (UNGASS) and the Global Fund to Fight AIDS, TB & Malaria have the potential to

make an enormous impact on the pandemic throughout the world. ICASO has been involved in these new policy instruments, fromtheir genesis to their implementation.

ICASOs Global Fund Advocacy project extends from the work we have been doing since the Fund was called for early in 2001.This year the Geneva-based Fund evolved from a strategic plan into a fully fledged independent organization. In 2002, the Fund

announced its Executive Director, convened its first Board meetings, appointed a technical review panel to review proposals,recruited highly qualified staff from around the world, attracted US$994 million in funding, and gave away $666 million in grants.

As an original architect of the Fund, we continued to monitor its governance through active involvement in Fund Board meetings, and

through our role as a communication focal point for the Northern NGO delegation. We also served on the editorial advisory board ofthe Funds highly effective watchdog: the Global Fund Observer, published by a new ICASO partner NGO,Aidspan. We conducted skill-building sessions at a range of forums, including the regional and international AIDS conferences, for community-group representatives

seeking access to funding from the Fund. And, perhaps most importantly, we used each and every opportunity we had to promote theFund among policy-makers, donors, corporate leaders, and anyone else who might be able to forge new policies or attract new money

to ensure the Funds solvency.

Our UNGASS Advocacy project extends from the role we played as facilitator of the civil society input to the UNGASS meetings heldin New York last year. Following through with the implementation ofThe Declaration of Commitment, this year ICASO mobilized thenetworks to use the Declaration to hold local and national governments accountable for their responses to the pandemic. In addition

to direct advocacy work emanating from the Regional Secretariats, we conducted seminars and skill-building sessions around the worldto inform community groups how to use the document to lobby their local and regional authorities. We also contributed to the early

stage discussions of developing monitoring and evaluation indicators for the Declarations implementation, joining a cross-sectionof governmental and non-governmental bodies.

A key component of launching our broad-sweeping program, The Global Initiative, was pilot testing the alignment of programs andprojects among the Regional Secretariats. The first project to undergo the alignment process was the UNGASS Advocacy project


The promotion of civil society involvement in the development of AIDS policy remains a

foundation of ICASOs work, globally and regionally. Over our more than ten years of

advocating the concerns of community-based organizations in major policy discussions,

ICASO has gained a reputation as a credible leader and facilitator, and as a source forcurrent, accurate information.


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jointly designed and implemented by the LACCASO and APCASO. Frequent structured communication between the two RegionalSecretariats enabled them to share and distribute updates on the UNGASS implementation process; they cooperated on creating

template advocacy tools, workshop agendas, and input to the development of monitoring and evaluation indicators; and they both

undertook additional UNGASS advocacy initiatives relevant to their local situations. The results from the alignment pilot are yet tobe formally compiled, but the momentum it created is encouraging.

In May, ICASO published a report entitled, The International Guidelines on HIV/AIDS and Human Rights: How are they being used

and applied?This report marked the culmination of a two-year research project into the seminal principle on which ICASO wasfounded: the protection of human rights, especially for people living with HIV and AIDS.

The Second International Consultation on AIDS and Human Rights, organized by UNAIDS and the UN Commission on Human Rightsin 1996, issued the International Guidelines on HIV/AIDS and Human Rights to member states to assist them in designing programs

and policies which protect and promote human rights in the context of confronting the AIDS pandemic. In 2002, ICASO undertook acommunity research project to try to get a clear indication on how that process was progressing by focusing on a particular aspect of

the global response to the pandemic: access to quality treatment and the role that communities have played in improving that access.

The research compiled information on how a select number of countries have responded to the Guidelines overall, and how thecommunity sector has participated in the implementation of one aspect of Guideline 6 safe and effective medication at anaffordable price. Understanding and responding to access to treatment debates, must begin with the broader issue of the right

to health - a fundamental human right.

The conclusions drawn in the report are not surprising: human rights for people living with HIV and AIDS especially in developingcountries are not guaranteed when using access to treatment as a marker. Much work remains to be done to raise awareness of the

Guidelines, and to hold governments accountable for their implementation in national health policies and programs.

The Policy Development & Advocacy program is funded by the Japanese Foundation for AIDS Prevention and UNAIDS.

Our UNGASS Advocacy project extends from the role we played as facilitator of the

civil society input to the UNGASS meetings held in New York last year.


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CARE & TREATMENT INFRASTRUCTURE:OVERCOMING THE BARRIERS

There have been great advances in the policies and programs devised to help people in resource-poor settings access anti-retroviral

therapies (ARVs), but still too many are left without these life-saving medications. Even when the prices of some ARVs werereduced, increased access did not occur, or did so only marginally. Cost and availability are not the only determinants of access.

A study conducted by ICASO identified several other barriers to ARV treatment, notably related to the issue of infrastructure.

The Care & Treatment Infrastructure project began in 2001, led by an international research team. Sixteen people living with

HIV from eleven countries were interviewed about their attempts to access ARVs in their resource-poor communities, andtheir stories were analyzed in-depth. A report of the research was drafted and reviewed by a range of external experts; it was then

launched at the Barcelona AIDS conference.

The report, entitledAdding Infrastructure to the Advocacy Agenda, describes a broadened definition of the infrastructureneeded to get ARVs into the hands of people living with AIDS in resource-poor settings. This broader definition is based on aframework of infrastructure elements that includes human resources, commodities, systems, and laws, all of which are essential

for successful access-to-treatment efforts. Holding the drug companies accountable for charging high prices in poor communities isonly one of the possible interventions to address this challenge. Perhaps a more immediate and effective intervention is helping

families and communities channel their own human, financial and technical resources into accessing ARVs. Also critical are thelocal and national legislative and policy environments that help instead of hinder innovation in accessing treatments. This research

demonstrated clearly that all these elements of infrastructure should be considered in the context of communitiesneeds andabilities, and that a single, broad-sweeping definition of infrastructure is neither helpful nor accurate in this often contentious debate.

Because this research was so well received by community groups, policy makers, the pharmaceutical industry and others workingon the access-to-treatment conundrum, ICASO plans to create an executive summary of the report for broad distribution in

multiple languages. Also, we are adding this report to our Policy Development & Advocacy agenda, to ensure synergy with

other ICASO advocacy priorities.

GlaxoSmithKlines Positive Action Programme funded this research, the publication of the report and the Barcelona conference activi-ties where it was launched.



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THE HIV VACCINE PROJECT:

PREPARING FOR HOPE

We recognize that prevention is key

to eventually stopping AIDS forever

and that vaccines will be the ultimate in

HIV prevention technology. Thats

exactly why it is so important that the

communities where vaccines will be

tested, developed, and distributed are

involved and aware from the outset.

The need to build the capacities of communities to cope withHIV vaccine trials and products (when they become available)

has grown exponentially over the last two years, as more trialsites emerge in more countries.

ICASOs HIV Vaccine Project was developed in 2000, in responseto a need expressed by community-based organizations to improve

their knowledge and expertise in HIV vaccine research anddevelopment issues. In order for vaccine trials to be effective, and

ultimately for a future vaccine to be accepted in their communities,community groups need to be able to explain the issues and pro-

mote participation. Community involvement is important at theoutset, to ensure that trials are responsive to community concerns.

In response to the rapidly evolving field of HIV vaccine researchand development, this year ICASO published two needed reports

targeted to developing country communities where trials areeither located or planned. The 2nd edition of our HIV/AIDSVaccine Primerwas widely distributed at the Barcelona confer-ence and elsewhere. The Science of HIV/AIDS Vaccines wascompleted at the end of this year, and will be distributed early

in 2003. This report is unlike any in the field, as it makes thecomplex science of HIV virology more broadly accessible.

ICASO has been instrumental in establishing the African AIDSVaccine Program (AAVP), a partnership of non-governmentalorganizations and community groups across Africa dedicatedto strengthening community participation in setting the HIV

vaccine agendas designed for their region.

Through a series of consultations held over the past two years, theAAVP was borne out of a consensus that community participation

in the development of HIV vaccines needed to be structured. The

nature of that structure is being deliberated and is expected to be

formalized in the next AAVP Steering Committee set for mid-2003.ICASO is providing in-depth technical assistance to the Steering

Committee, and AfriCASO will play a leading role in the imple-mentation of the AAVPs work plan.

Through working to build a solid infrastructure for communityparticipation in vaccine development, by building the capacity of

partner NGOs like the Kenya AIDS NGO Consortium to developtheir own vaccine preparedness program, and by consistently

disseminating pertinent information in easily accessible formatsand language, ICASO maintains a vigilant stance in the everchanging vaccine development field.

We recognize that prevention is key to eventually stopping AIDS

forever and that vaccines will be the ultimate in HIV preventiontechnology. Thats exactly why it is so important that the com-

munities where vaccines will be tested, developed, and distributedare involved and aware from the outset.

The HIV Vaccine Project is funded by the International AIDS

Vaccine Initiative, and AIDS FONDS.


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THE CONFERENCES INITIATIVE:BRIDGING THE DIVIDES


ICASO is perhaps best known for our long-term role as a co-organizer of the international and regional AIDS conferences heldin various countries since 1985. The international conferences happen in even years, and the regional conferences in odd years.

Our role as a conference co-organizer is to ensure that the voices of communities infected and affected by HIV/AIDS are heard

and included in both the organization and the proceedings of the conferences. Over the years, we have seen scientific findingspresented at the international and regional AIDS conferences translated into pragmatic frontline programs as a result of broad

community participation in the conferences.

The focus in 2002 was on the XIV World AIDS Conference held in Barcelona, Spain. ICASOs co-organizing colleagues were

representatives of the Joint United Nations Programme on AIDS (UNAIDS), the Global Network of People Living WithHIV/AIDS (GNP+), the International Community of Women Living with HIV/AIDS (ICW), and the International AIDS

Society (IAS).

As usual, ICASO was prominent in both the organization of the conference and its proceedings. We hosted four official satellitesessions, two skill-building sessions, and a press conference. Our exhibition booth attracted a great deal of attention from

conference attendees from community-based organizations around the world.

As we do after every International AIDS Conference, we published a report which describes the conference from the ICASO

perspective and details our conference activities. This, and all other ICASO publications are available at www.icaso.org.

GlaxoSmithKlines Positive Action Programme has funded ICASOs Conferences Initiative for many years, and continued to do

so in 2002 along with the Canadian International Development Agency and Merck & Co., Ltd.


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Adding Infrastructure to the Advocacy Agenda (English)

Developing HIV and AIDS Vaccines: An Introduction for Community Groups,

2nd Edition (English, Spanish & French)

The International Guidelines on HIV/AIDS and Human Rights:How are they being used and applied? (English)

Report from the XIV International AIDS Conference (English)

Update on the UNGASS Declaration of Commitment on HIV/AIDS (English)

Global Fund Update: Information on the Global Fund to Fight AIDS Tuberculosisand Malaria for NGOs and Civil Society (English, Spanish & French)

HIV/AIDS Networking Guide,2nd Edition (English, Spanish & French)

2002 PUBLICATIONS AVAILABLE IN PRINT

AND AT WWW.ICASO.ORG

To request a printed copy of these or anyother ICASO publication,

Please e-mail us at [email protected]

-or-

fax us at (1-416) 921 9979

-or-

send us a note:ICASO

65 Wellesley St., E., Suite 403

Toronto, ON, Canada M4Y 1G7


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I C A S O

ICASO, the International Council of AIDS Service Organizations,

works to strengthen the community-based response to HIV/AIDS,

by connecting and representing NGOs throughout the world.

Founded in 1991, ICASO operates from regional secretariats based

on all five continents, guided by a central secretariat in Canada.

www . i c a s o . o r g

Documents

ICASO Annual Report 2002