Transparency and the UNGASS HIV/AIDS high-level review meeting

Last year, in his progress report on the implementation of the UNGASS Declaration of Commitment on HIV/AIDS, the UN Secretary General said:

"Civil society is playing an increasingly valuable role in monitoring the fulfilment of these commitments."

UNAIDS requested governments to submit progress reports on DoC implementation by the end of last year - and despite repeated requests, government reports have not yet been made publicly available by UNAIDS. Contrary to Kofi Annan's hopes, denying access to the basic information and assessments of national government 'progess' seriously undermines any meaningful involvement by civil society.

Please consider adding your signature to the statement below, which strongly urges UNAIDS to make this crucial information available and help ensure meaningful participation of civil society in the UNGASS review process.

If you would like to add your name to the list of statement signatories, please send an email NOW to:

ungasshiv@gmail.com

The final statement will be compiled and sent to UNAIDS on Thursday 30th March 2006.


Many thanks for your support,

(For Civil Society Coalition on HIV/AIDS UNGASS)


Joint Statement to UNAIDS

As the date of the UN General Assembly’s high-level review of progress on implementation of the 2001 “Declaration of Commitment on HIV/AIDS” (Doc) draws closer (31 May – 2 June, 2006), we wish to raise an urgent issue that demands immediate attention.

UNAIDS requested governments to submit progress reports on DoC implementation by December 31st, 2005 (later extended to January 31st, 2006). At the same time, over 25 civil society organizations presented UNAIDS with independently-researched national “shadow reports”, and have shared these findings with each other, with their governments and with the broader public (see www.ungasshiv.org).

Unfortunately, despite our repeated requests, government reports have not yet been made publicly available by UNAIDS. Without public access to governments’ official assessments of their progress, it is not possible for civil society groups to comment, respond, and offer alternative assessments and perspectives at the high-level review. We are certain you will agree that civil society groups have different and equally valuable perspectives to governments – perspectives which will add immeasurably to the discussion and debate at the high-level review.
The DoC urges the involvement of civil society as an equal partner at all levels of policy-making, implementation and monitoring and evaluation (DoC: p32-33; 94-103). To fulfill this critical aspect of the DoC, it is clear that transparent policy-making processes and access to critical information are essential. In the interest of preserving the credibility and legitimacy of the high-level review meeting, please let us know when and how UNAIDS plans to make available both the government progress reports it has received and its “global progress report.” We would also request a full accounting of which governments have reported on DoC implementation as requested, and which have not. We trust that these requests can be met well in advance of the high-level meeting.

With thanks for your continued support for strong civil society participation in the UNGASS HIV/AIDS high-level review.

Postscript

By the time this letter was sent to UNAIDS on April 3 2006, it was signed by all of the people listed below. Three days later, on 7 April 2006, UNAIDS capitulated and published all national UNGASS reports on their website. They are now available here.

Signatory Organisations:

African Services Committee (Kim Nicols)
AIDS Care Watch (Abigail Eirkson)
AIDS and Rights Alliance for Southern Africa (Michaela Clayton)
Associacao Mulher, Lei e Desenvolvimento (MULEIDE; Rafa Valente Machava)
Center for Health and Gender Equity (CHANGE) (Healy Thompson)
Center for Women's Global Leadership (Sara Nordstrom)
CHOICE, for youth and sexuality (Anneke Wensing)
Coordinadora Peruana de PVVS (Pablo Anamaria)
EATG, European AIDS Treatment Group, (Wim Vandevelde)
Egyptian Initative for Personal Rights (Hossam Bahgat)
Ecuadorian Coalition of PLWHA (Dario Abarca)
Family Care International (Shannon Kowalski-Morton)
Foresight Generation Club (Albert Yeboah Obeng)
Fundación Apoyo y Solidaridad de Cali- Colombia (Oswaldo Adolfo Rada)
Grupo Português de Activistas sobre Tratamentos de VIH/SIDA (GAT; Wim Vandevelde)
German Foundation for World Population (DSW; Karen Hoehn)
Health & Development Networks (Tim France)
International Women's Health Coalition (Zonibel Woods)
Marie Stopes International (Joyce Haarbrink)
NEPWHAN (Pat O Matemilola)
No Limit For Women
Fundación en Acción, Revista INdetectable (Luís Augusto Rivera)
Progressive Organization of Gays in the Philippines (Edgar Atadero)
Public Services International (Alan Leather)
Red Latinoamericana de Personas que viven con Vih - Sida (REDLA+; Oswaldo Adolfo Rada)
Russian Harm Reduction Network (Vitaly Djuma)
Southern African Network of AIDS Service Organizations (SANASO; Farai Mugweni)
Students Partnership Worldwide (Fionnuala Murphy)
Tearfund (Richard Weaver)
The John Mordaunt Trust (Andria)
Treatment Action Group (TAG; Mark Harrington)
Voluntary Services Overseas (VSO; Samantha Willan)
World AIDS Campaign (Marcel van Soest)
World Population Foundation (Yvonne Bogaarts)

Individuals:
Philip Abraham, Chief Consultant, PA Development Consultants, India
K. K. Abraham, President, Indian Network for People living with HIV/AIDS (INP+)
Albert Adalsteinsson, Iceland
Atiq Adil Shah, AMAL Pakistan
Bright O Aleruchi
Dennis Altman, Professor of Politics, LaTrobe University, Australia
Sam Anyimadu-Amaning, Ghana HIV/AIDS Network
Rita Arauz Molina, Presidenta, The Global Fund for AIDS, TB and Malaria
Luís Augusto Rivera, Director del Área Social, Mauricio Sarmiento Casallas y Rafael Sandoval Arévalo, Colombia
Sunil B Pant, Director, Blue Diamond Society, Nepal
Sumita Banerjee, Program Officer, International Council of AIDS Service Organizations, Canada
Murdo Bijl, Health Connections International, The Netherlands
María Bilbao Nogueira
Cecilia Blankson, chairperson, GHANET Western Region Chapter, Ghana
Rosa Borja Borja, Peru
Saira Carina Ortega, Coordinadora Area de Prevención ITS/VIH/SIDA, Asociación de Salud Integral
Estela Carrizo, Grupo de Apoyo, Red Latinoaméricana de Personas Viviendo con vih/sida (RedLa+), Argentina
Estela Carrizo, Coalición Internacional de Activistas en Tratamiento (CIAT)
Lic. Julio Cesar Aguilera, Director Fundación REDVIHDA, Miembro de la REDBOL (Red Nacional de PWS de Bolivia)
Birungi Charles, HIV/AIDS Focal Point of Hoima Catholic Diocese, Uganda
Blessing Chataira, Zimbabwe
Enrique Chavez, Advocacy Director, AID FOR AIDS International, United States
Oge Chibueze-Ukaegbu
Ngoni Chibukire, Senior Regional Programme Officer (SRPO), Southern Africa HIV/AIDS Information Dissemination Service, Zimbabwe
Susan Chong, Asia Pacific Council of AIDS Service Organisations (APCASO), Malaysia
Sarah Chynoweth
Chris Collins, United States
Lena Corina Valencia, Peru
Mary Corkery, Executive Director, KAIROS: Canadian Ecumenical Justice Initiatives/Initiatives canadiennes oecumeniques pour la justice, Canada
Joanne Csete, Executive Director, Canadian HIV/AIDS Legal Network
Delme Cupido, AIDS Law Unit, Legal Assistance Centre, Namibia
Pablo Cymerman, Intercambios Asociación Civil, Argentina
Kevin Dance CP, Passionists International, United States
Theresa de Necker, Managing Director, Vusi Sizwe Holdings (Pty) Ltd, South Africa
Belletech Deressa
Franck DeRose, Executive Director, The Condom Project, United States
Christoph E. Mann, Ecumenical HIV/AIDS Initiative in Africa, Switzerland
Begonia Elizalde Nunez, Peru
Betty Escobar, AID FOR AIDS Venezuela
Cecibel Estuat Geldres, Peru
Sabir Farhat, Secretary General, AIDS Prevention Society of Pakistan (APSOP), Pakistan
Bernard Forbes, Chair, UK Coalition of People Living with HIV and AIDS, United Kingdom
Jessie Forsyth, Linkage Program, Mozambique
Nadia Fringer, International AIDS Vaccine Initiative
Diego Garcia Morcillo, casmu, Spain
Olaide Gbadamosi, Executive Director, Network for Justice and Democracy, Nigeria
Alicia Gibbs, Caritas Australia, Australia
Alejandra Gil, Directora de APROASE A,C, Organización de Trabajadoras Sexuales de México
Francoise Girard, Director, Network Public Health Program, Open Society Institute, United States
Gregg Gonsalves, United States
Anna Gorter, Instituto CentroAmericano de la Salud, Nicaragua
Rachel Guglielmo, Project Director, Public Health Watch Open Society Institute, United States
Rana Gulzar, AMAL Pakistan
Sergio Guzmán, Representante de las ONGs con Servicio en VIH/SIDA de la Provincia, Venezuela
Linda Hartke, Coordinator, Ecumenical Advocacy Alliance, Switzerland
Jamie Isbister, Caritas Australia,
Mobasharul Islam, HIV Program
Mpiima Jamir Ssenoga, General Secretary, AIDS Alert Uganda
Sherine Jayawickrama
Iva Jovovic, Executive Director, NGO LET/FLIGHT, Croatia
Nelson Juma Otwoma, AMREF, Kenya
Bertrand Kampoer, Coordinator, FISS-MST/SIDA, Cameroon
Rama Kant, Professor, Department of Surgery, King George's Medical University and Gandhi Memorial & Associated Hospitals, India
Ronald Kayanja, Director, Panos Global AIDS Programme, Zambia
Appaih Kwaku Boateng, Executive Director, Ghana
Carole Leach-Lemens, United States
Cath Leary, Caritas Australia, Australia
Flor Lemundo, Peru
Lídice López Tocón, Colectivo por la Vida, Peru
Amanda Lugg, African Services Committee, United States
Lois B Lunga, Executive Director, Southern Africa HIV/AIDS Information Dissemination Service, Zimbabwe
Ian Mashingaidze, Country Programme Manager, ActionAid International Zimbabwe
Justine McMahon, Caritas, Australia
Shaun Mellors, Activist, South Africa
John Mihevc, Team Leader, KAIROS: Canadian Ecumenical Justice Initiatives/Initiatives canadiennes oecumeniques pour la justice, Canada
Sakanga Mourouba Rene, National Coordinator, HIV/AIDS National NGOs Network, Central African Republic
Godfrey Mungazi
Michelle Munro, Programme Director, HIV/AIDS and Health, CARE Canada
Josephine Murphy, Coordinator, Youth Community Training Centre, Zambia
Joe Muwonge, Senior Policy Advisor, World Vision Partnership, United States
Danny Mwitanti, Health for Africa
Gopakumar Nair, HIV/AIDS Policy and Programme Adviser, Save the Children UK
Abid Naqvi, AMAL Pakistan
Digambar Narzary, India
Louise Nash, Health & Development Networks
George Ndukwu, The Condom Project, Nigeria
Lucy Ng'ang'a, EANNASO, Tanzania
Alessandra Nilo, Diretora Presidente, Gestos - Soropositividade Comunicação e Genero, Brazil
Elena Obieta, Clinician, Argentina
Tinu Odugbemi, Head High International, Nigeria
Ibekwe Ogochukwu, Pro National Youth Network On HIV/AIDS, Anambra State, Nigeria
Rachel Ong, APN+ Advisor, PCB NGO Main Delegate for Asia & Pacific
Lisandro Orlov, Pastoral Ecumenica VIH/SIDA
William Oscar Fleming, HIV/AIDS Program Specialist, United States
Jirapan Panwang
Federico Parodi, Presidente, Red de Personas Viviendo con vih/sida, Argentina
Ericka Pastor Asencios, Peru
David Patterson, Instituto CentroAmericano de la Salud, Canada
Noris Pignata, Argentina
Nigel Pounde, HIV/AIDS Project Co-ordinator, Church of Scotland, Scotland
Carlos Quintero Saéz, Diréctor Ejecutivo, Acción Solidaria, Venezuela
Saloman R Jeldi, President & CEO, Strides Society, India
Allan Ragi, Executive Director, Kenya AIDS NGOs Consortium (KANCO), Kenya
Razahussnain, AMAL Pakistan
Margaret Rice, Caritas Australia,
Germán Humberto Rincón Pertti, Asociación Líderes en Acción, Colombia
Imran Rizvi, AMAL Pakistan
Nighat Rizvi, AMAL Pakistan
Sonia Rojas Camargo, Peru
Katja Roll, Political Coordinator, Action Against AIDS Germany
Francisco Rosas, Mexico
Mindy Jane Roseman, J.D., Academic Director, Harvard Law School, United States
Catherine Rowan, Corporate Responsibility Coordinator, Maryknoll Sisters, United States
John Ryan, Chief Executive Officer, Association for Prevention and Harm Reduction Programs Australia, Australia
Arati Samajpati, NGO Parivartan, India
Laura Scully
Renu Seth, India
Rainer Seybold, Projektkoordination, Finanzen und Vernetzung, Aktionsbündnis gegen AIDS, Germany
Faisal Shafik, AMAL Pakistan
Aditi Sharma, International HIV&AIDS Campaign Coordinator, ActionAid International, United Kingdom
Ursula Sharpe, Medical Missionaries of Mary, Ireland
Bhagawan Shrestha, The Netherlands
Sheila Shyamprasad, Consultant for HIV/AIDS Program and Projects, Department for Mission and Development, The Lutheran World Federation, Switzerland
Garet Sibanda, Zimbabwe
Saraswati Singh
Caroline Sirewu
Simon Stroud, Caritas, Australia
Miriam Stucchi Malpartida, Peru
Amie Tallow
Bakary Tandia
Pascal Tanguay, Information Officer, Asian Harm Reduction Network (AHRN), Thailand
Ted Taziveyi, African Health Promotion Officer, Terrence Higgins Trust, United States
Martha Tholanah, Programme Manager for Health, Gays and Lesbians of Zimbabwe (GALZ), Zimbabwe
Saima Toor, AMAL Pakistan
Sajjida Toor, AMAL Pakistan
Jamie Uhrig, Thailand
Roy Unge
Joost van der Meer, Executive Director, AIDS Foundation East-West (AFEW), Russia
Pieter van Gylswyk, Programme Officer, Diakonia Regional Office for Southern Africa, South Africa
Barry Van Wyk
Paulo Vieira, YouAct - European Youth Network on Sexual and Reproductive Rights, Portugal
Vianca Vilcahuaman Vilcamiche, Peru
Ahoefa Vovor, Caritas Africa
Asunta Wagura, Executive Director, Kenya Network of Women with AIDS (KENWA)
David Roger J. Walugembe, Information Scientist, Ministry of Public Service, Uganda
Sonja Weinreich, German Institute for Medical Mission (Difaem)
Patricia Weisenfeld, Asia Regional Program Manager, The Female Health Foundation, Thailand
Wayne Wiebel, University of Illinois at Chicago, United States
Mohammad Ziaul Ahsan, Organization for Social Development of Unemployed Youth

The chasm between HIV and TB

The two worst global health problems have combined forces well. But the institutions addressing them have not

A quiet shift took place a few years ago in the impact of global infectious diseases: The human immunodeficiency virus (HIV) epidemic surpassed that of age-old tuberculosis (TB).

In the past five years annual spending on HIV programmes increased 16-fold – from USD 500 million to around USD 8 billion per year. The same period saw a paltry 70% increase in funding for anti-TB efforts.

The cost to humanity? HIV kills around three million people every year. TB kills two million.

The point, however, is not to tally up marks for a macabre competition; it is precisely the opposite: We need to stop thinking of the two diseases in separate bodies, because a third of the 40 million people living with HIV today are also co-infected with TB.

In 2006 and for at least the next decade, HIV’s biggest challenge is TB.

One in every three people harbours the TB bacteria in their body. That’s two billion people. TB stays inactive, but transforms into active TB disease in about nine million of us every year. Crucially, people with HIV are about 30 times more likely to develop active TB than those without HIV – fuelling a resurgence of TB in sub-Saharan Africa and some states of the former Soviet Union. East and South Asian countries are next in line.

Imagine the two diseases in one body. Jolting enough to be told you have TB – then to be called back to hear your HIV test was also positive. The doctor is fully aware that TB progresses faster in HIV-infected people, and that TB in those who also have HIV is more likely to be fatal. Their task now is to explain to you that the two diseases often cannot be treated at the same time; the two sets of drugs can interfere with one another.

Sadly, the ease with which the two diseases intensify one another is not mirrored by the groups of people and institutions working to fight them. Despite years of knowing how TB and HIV interact with one another, and how programmes to address them should also work together, this is how they continue to think about HIV and TB: Separately.

It is astounding to find that the heads of three of the main actors responsible for controlling the two diseases – the World Health Organization (WHO), the Joint United Nations Programme on HIV/AIDS (UNAIDS), and the international Stop-TB Partnership – do little more than nominally reflect each other’s experience and advice. All the more surprising when you consider that the offices of the three men are no more than a kilometre apart in Geneva. Each programme continues to eye the others from across the car park and in the process, lose vital lessons in political strategy, resource mobilisation and clearing of service delivery bottlenecks.

The solution is absurdly simple: Break down the walls of established thought between the two diseases and you hold out the biggest promise for saving million of lives.

There is much that the relatively new HIV world has to learn from the old guard. TB has been around for centuries and is one of the areas of public health where we know the most. It is a curable disease with available medicines, and a long demonstrated track record of success. The doctors, the detection and treatment centres, the drugs – much is already in place.

Since it was set up in 2001, for example, the TB Global Drug Facility – aimed at increasing access to high quality TB drugs – has delivered over 4.5 million TB patient treatments. Something that the WHO-supported ‘3 by 5’ anti-HIV drug initiative has been trying to emulate, as yet incompletely.

TB is not only curable, it is preventable. The failure to effectively deliver TB diagnosis, treatment and prevention to people with HIV means that many are dying needlessly.

The most frequently used method for detecting active and infectious TB is a microscopic analysis of a patient’s sputum. The trouble is that the test is antiquated and unreliable in people with HIV. The test result may be negative even though a person has active TB, making reliable TB diagnosis impossible. Commonly-used TB drug treatments are also outdated, with patients often required to take large numbers of tablets every day for up to eight months.

These technical obstacles are far from new; they have been written about and discussed for years now. Less often highlighted are some of the divisions between TB and HIV/AIDS established thinking that prevent synergy.

The TB world can learn from some of the accepted tactics of the movement against HIV. These include obvious lessons on how to raise more money as well as a loyalty to community- and rights-based approaches.

For example, the mainstay of the WHO gold standard policy and treatment package for TB control – known as Directly Observed Treatment, Shortcourse (or DOTS) – is a standard drug treatment for all confirmed cases. This originally meant health workers literally watched patients take their drugs (hence ‘directly-observed’) to ensure the drugs were, in fact, ingested.

“That, for me, is unacceptable because it limits the autonomy and dignity of every person,” commented Zackie Achmat, one of the founders of the South African Treatment Action Campaign, at a recent TB conference.

The HIV/AIDS sector sees clinical care as necessary but not sufficient for the best results. People have to make changes in their lifestyles, develop new skills, and must learn to interact with health care providers to successfully manage their conditions. Similarly, people with TB can no longer can be viewed, nor see themselves, as passive recipients of health care services. These issues are dealt with in a newly published TB ‘Patient’s Charter’, which aims to empower people with TB and their communities by highlighting their rights and responsibilities, and need to be put into practice widely and immediately.

Connecting with the expertise of community groups has been embraced to extreme degrees by responses to TB and HIV. TB services rarely integrate community resources into the care of patients to the same degree as HIV/AIDS services, leaving a broad array of consumer groups, patient advocates, and nongovernmental organisations (NGOs) virtually untapped.

On the other hand, HIV/AIDS NGOs fill many service gaps to greatly enhance the care of people living with HIV and help to meet goals for service coverage and treatment outcomes. A new global plan to address TB head-on over the next decade was recently launched by the Stop TB Partnership. Actions for Life – Towards a World Free of Tuberculosis proposes some bold shifts towards empowerment of TB patients and communities, and asks governments and foundations to foot the bill. They should, despite the ten-year, USD 56 billion price tag.

Some demonstrated behaviour change will probably be required to convince donors. If they can learn to speak the same language, leaders of local and international organisations, NGOs and community-based support groups are perfectly positioned to raise awareness about the two conditions simultaneously. Community leaders are positioned to sensitise the public about TB and HIV, and reduce the stigma associated with them.

Foremost though, is the need for greater cooperation and coherence at the level of international institutions and agencies that help governments to set policies, priorities and good practices in dealing with HIV and TB.

In 2000, at the launch of the Stop-TB Partnership, Peter Piot, still the head of UNAIDS today, may have foreseen today’s organisational stalemate quite clearly: “We are not in competition. We are as intimately allied as are the human immunodeficiency virus and the TB bacillus,” he explained. “We must work together. If we are serious about our missions to stop TB and stop HIV, finding new realistic pathways to the future is imperative.”

Six years on, we have waited too long to see their coherent joint actions on TB and HIV. The first step is simple: Someone get Drs Piot, Raviglione and Espinal to match their schedules and talk.

This is an op-ed that I wrote to mark World TB Day, which falls on Friday 24th March, 2006. I wrote it in my capacity as advisor to the AIDSCareWatch (ACW) campaign. With 350 partners in Asia and Africa, ACW advocates for a comprehensive care package for people living with HIV/AIDS.

So far picked up by:
The News International, Pakistan (23 March 2006)
The Monitor, Uganda (24 March 2006)
The National, Papua New Guinea (24 March 2006)
The Independent, Bangladesh (27 March 2006)
The Kashmir Times, India (27 March 2006)

The role of ICASO

An interesting discussion has emerged on the HealthGap and ITPC lists over the past day or two. It concerns the role of ICASO in ‘managing’ the nomination of civil society participants in various global HIV/AIDS policy arenas and processes. I think it touches on some deeper issues that go way beyond ICASO.

This was all happening in the space of a few hours on different lists – it was beginning to feel like an episode of 24! – with Richard Stern (see left) playing the Keifer Sutherland role.

Richard asked a fairly innocuous question about one of the UNGASS-related working groups, to which Mary Ann Torres (ICASO) replied:

Dear Richard:

Communication about the Civil Society Coalition on UNGASS HIV/AIDS has been posted in all listserves since the end of January. Explanation about the aims of the Coalition, as well as the structure has been amply disseminated. Working Group 2 is one of three working groups created to implement the strategies of the Coalition. It currently has +100 members (from all regions).

Thanks for your interest

Mary Ann

Then Richard came back with:

Thanks Mary Ann

I am not sure that it is a good idea that ICASO is "managing" the nomination of so many important positions on a world wide level, with the result being that these are the people who have access to decision makers in various forums and meetings. ICASO is very big, isn't it? I hope that this type of discussion is not offensive to you...its just a reality that ICASO seems to have become a kind of "mega-AIDS Corporation."

At the moment I don't have any suggestions for an alternative plan, but I think diversity in decision making is very important, and that alternatives should also be sought.

On the one hand this could be positive in some ways, on the other hand, is it really good for civil society world-wide to have so many events, nominations, etc. "managed" by ICASO? Please feel free to let me know your thoughts.

sincerely,

Richard

To which a fairly defensive Tim Thomas (ICASO consultant) responded:

First, a disclaimer: I have been working with ICASO for over 5 years as a part-time independent consultant.

I've never met Richard Stern, but I've marveled at his audacity over the years. More often than not, his activism is well placed because it's well informed. Unfortunately, his (and others) ongoing criticism of ICASO is based on hearsay and speculation - not the facts. Given that ICASO has forged new ground as one of the world's most prolific and strategic advocates on behalf of the community sector, it's strange that forceful and frequent critics like Stern choose to remain so uninformed about ICASO'sstructure.

ICASO is not a 'mega-AIDS corporation.' A simple review of their annualreport shows the breadth and scope of their work, including their financial state. At last count, their Toronto office consists of fewer than 10 full-time employees, and their Regional Secretariats (APCASO, AfriCASO,LACCASO, NACASO, and EEPO) are struggling to accomplish an ambitious work-plan with one or two full-time employees in each office. These people come from the communities they serve, just like most of the activists and advocates on this list.

The reason that ICASO facilitates nominations and appointments of communitysector representatives to so many forums, committees and boards is simple: no one else is doing it. Time and time again, ICASO sends emails as broadly as possible requesting nominations and suggestions for others to do what it does, and time and time again no one replies. There are ample opportunitiesto get involved in ICASO's advocacy and networking - Stern needs only to commit his time and energy and then he , too, will be well placed to influence policy and those who make it. Complaining that ICASO is running the show is a waste of time. If you want to change how community-based advocacy is organized, then stop whining and get involved.

Tim Thomas

And Richard came back to him with….

Hey Tim,

If ICASO has only ten full time employees then how can you possibly do a good job in terms of handling all the responsibility for the nominations for these very important posts, when this is combined with all the other tasks that you undertake??? This is a critical question. Some times its good to say "no, we just can't handle that,lets see if someone else can do it better than us." All of ICASO's public work in this area is "high profile," in the sense of contact with "decision makers" or facilitating who gets contact on the various Boards, working groups etc. I have my doubts about whether you can do an adequate job at effectively and democratically serving the world wide community of PLWA and those who support them with only ten staff members given all the other responsibilities that ICASO apparently has. Sorry but that's how I see it.

By the way, I also set limits for how much I can do effectively. We in Agua Buena focus on treatment access issues in several countries but we often say no to invitations, and we don't take on responsibilities that we can't handle effectively. That, however, does not take away my right to have an opinion and share it, in fact more opinions would be better. I am not sure why you are so defensive.

The core of advocacy is criticism and large Agencies that are so involved in issues related "access to decision makers" should be willing to accept criticism, and at least consider reevaluating their policies...

Tim, I am not criticizing all of what ICASO does, I have seen many, many good things that ICASO does, and I have great respect for the work of LACCASO, your counterpart in Latin America, which has been a leading advocate on so many issues for many years.

But that doesn't mean that I agree with everything that ICASO does, and my position on the issue we have been discussing here has been clear for two years. In my opinion, there is a significant and un-met need for a greater "balance of power" when it comes to determining the representatives of the various constituents of PLWA on the Global Fund Board, working groups, invitations to meetings, etc. etc. etc. As well as the management of the application process where ICASO does not make the final decisions about who is chosen.

My 'audacity' in terms of hopefully constructive criticism (not only of ICASO, but of the Global Fund, the UN Agencies, and many, many other key
actors) that you refer to has certainly closed some doors to me in terms of opportunities and invitations for higher level participation, but I will stick with my approach--- given the number of lives that are at stake. Tim, At this moment we have 4,000 deaths a day from AIDS and probably going up, so you can surely agree that improvement is needed somewhere, right?

If this kind of holocaust were happening in Europe and the U.S., there would be demonstrations in the street every day, until things changed, and I would probably be a moderate compared to what others would be doing and saying.

sincerely,
Richard

I have to say I totally share your [Richard] concerns about the need for a broader and more inclusive mechanism for civil society nominations to global and other bodies, and for a more effective system and division of labour to be set up. I doubt there is anyone who could possibly doubt the importance and benefit if it were established. Where I differ is on whether the problem lies with ICASO. Sure they are small, and sure they have limited capacity (I was in their Toronto offices in February and met I think 6-7 people, so fewer than 10 full-time staff really is just that), but I think our collective inability or reluctance to address this and to demand more of this kind of process is the real shame. So well said and thank you for getting this thread going.

Besides the size of any potential facilitator, there are at least two other key issues that need to be raised here.....

Co-option for one. Without intending to point fingers, we have to acknowledge the good and the bad of ICASO's very close relationship with some of the bodies we seek to collectively influence through advocacy. This HAS to put them in a difficult position from time to time - i.e., when civil society 'interests' and those of the global bodies like UNAIDS or the Global Fund get blurred, and things end up being less transparent than we might naively hope. Let's look at an example of what I mean and you can make up your own minds what is driving this kind of process.

When the Universal Access Global Steering Committee (GSC) was set up last November, an email was sent out by UNAIDS giving THREE WORKING DAYS for civil society nominations to be made. It transpired that at the time UNAIDS also 'invited' ICASO to fill some kind of 'facilitating' role in support of civil society engagement with the UA Initiative. As it turned out, the pressing need for convening the committee so quickly (its first meeting) evaporated, and we could actually have taken about two months if needed.

Apparently (according to UNAIDS) about 20 people were nominated during those three days as potential civil society representatives to that body. We were told (again by UNAIDS) that the current reps were selected from those 20. We also now know that a representative of one of the ICASO regional secretariats is one of the current 10 reps, and one person from ICASO's Toronto office has observer status at the GSC meetings that relates somehow to ICASO's/his facilitating role.

We made an explicit appeal (to UNAIDS) for information in three areas:

1. Who was on the list of 20 nominees for the Universal Access panel;

2. Something about how UNAIDS went from those 20 nominees to the selected people. ("Even if you 'hand-picked' them from the list, tell us that");

3. What information can/should be more widely shared about the Global Steering Committee reps (i.e., what can we expect them to share?).

We never received this information. To my knowledge the role of ICASO has never been explained and the information above has never been revealed (by UNAIDS or ICASO).

While all this was going on, I also wrote a mail on behalf of the UNGASS Civil Society Steering Committee that clearly stated:

"While we appreciate the nomination process UNAIDS is trying to follow, we have some serious reservations ... both in principle, but also in light of the very limited time available for a more open consultation and nomination process to be organised."

A general response came back from UNAIDS that included:

"Clearly the selection 'process' could be much improved and the civil society partnerships unit is looking to standardise a protocol for any future similar processes we take forward at UNAIDS - with closer involvement of the PCB NGOs, for example, as a possible way in helping determine outcomes. We have already had useful conversations with ICASO and other organizations about developing a protocol and will ask widely for inputs into this piece of work in early 2006."

So what was going on here? For certain we know that there was an inadequate civil society nomination process, and that it was controlled heavily by one of the very UN agencies that needs to be MORE accountable, not less; that transparency about how nominees were put forward (by who?) and finally selected was non-existent; we also know that ICASO was closely involved in the process behind the scenes, including to some extent 'advising' UNAIDS on how it should be conducted in the future - nevertheless there was zero transparency.

This was a terrible process and a collective failure to nominate participants effectively. It was probably no better that similar processes intended to help engage civil society in the Three Ones and Global Task Team processes, also 'facilitated' by ICASO if I recall correctly.

My personal interpretation is that a small group of people, some from UNAIDS, some from ICASO, and probably a small number of others, got together to do their best to make the process work under great pressure - how else does anything ever get DONE? Despite sincerity and genuine intentions in this instance, by simply going along with the situation of pressure created by UNAIDS, they perpetuated all that is the worst about these fake nomination processes. Of course, the total lack of transparency also leaves room for suspicion and doubts to creep in about motivation, and I for one have questioned whether balancing between maintaining their close relationship with UNAIDS (etc) and authentic transparency on behalf of civil society is even possible for ICASO or anyone else.

So that's the now. The other burning question is what should/could take the place of the mechanisms ICASO currently provides?

I can't help thinking that given investments already made the current systems should provide at least part of the answer. I would encourage ICASO and others to develop further in this direction - much further - possibly to do nothing else? But it has to be done with a much greater commitment to transparency, agreement to let their own HIV/AIDS advocacy agendas go for the sake of neutrality and objectivity, and demonstrate a clear loyalty to the civil society side of the relationships they are trying to help foster. I am not sure if ICASO can or is willing to do those things.

Let's unpack this a little further to see what the 'ideal' facilitator profile would have to look like. I suggest there are at least four essential enabling factors to making such facilitation work effectively:

• A unique type of credibility: Gaining a reputation for providing correct, complete and timely information, even when it may reflect badly on oneself or close partners.
• Sources of funding and other support that are INDEPENDENT of vested interests and political pressures.
• The general backing and support of the communities and organisations that broadly form HIV/AIDS civil society (whatever we each think that means).

And in case they are not difficult enough to find, the fourth is even more difficult to pin down:

• An ability to take up a stance of genuine reflection and responsibility - or the ability to put your own ideas aside.

Much of what we see in potential facilitators - including I am afraid ICASO - is typical of the way some NGOs behave: Blaming others for their political intrigue and failure to speak out, and then doing the same themselves.

The question is: If an organisation put forward a coherent plan to do this, and appeared to posess the characteristics above, how many of us would support it?

ICASO does not have that profile at present, but might want it (and could develop it) through its future actions. Who else? I am compelled to mention the 'new' World AIDS Campaign (WAC) and the fact that in some ways WAC and ICASO are trying to do similar things when it comes to facilitation. WAC is new and does not have any other agendas, other than to throw off the old UNAIDS 'baggage' that comes with the name and previous funding support. They are also in their start-up phase and still defining their role clearly - but do appear to have some refreshing approaches in mind.

These two organisations might provide the kind of alternative options/division of labour Richard is seeking. Do they have a plan to do so?