1.0
Introduction
“Outcomes
of relevant events of civil society shall be used as platforms for input to the
preparatory process and the special session, as well as to the outcome
document.”
- Recommendations on the Involvement of Civil Society
from the Note on
the Special Session of the General Assembly on HIV/AIDS
submitted by the
President of the General Assembly - 8 December 2000
This
document presents the conclusions of a meeting involving individuals from 31
not-for-profit networks and organizations from civil society, held in Geneva on
25-27 April, 2001.
We
commend the General Assembly of the United Nations for its decision to hold a
Special Session on HIV/AIDS and to issue a Declaration of Commitment.
We
believe that the unique perspective and credibility of people living with HIV,
and the contribution of civil society, are central to the response to the
epidemic. We believe that the development and implementation of national
strategies to combat HIV/AIDS must be done through proactive partnerships with
civil society and people living with HIV/AIDS.
Promoting
multisectoral national responses to HIV/AIDS and the active involvement of
civil society have been consistent and dominant features of international
HIV/AIDS discourses since they began. There can be no doubt that
community-based initiatives and action are being implemented in response to the
epidemic on a huge scale. The importance and benefits of such community
programmes cannot be overstated.
As
more is understood about the epidemic and the patterns of behaviour, social
interactions and cultural contexts that underlie the spread of HIV, and the
possible responses to it, greater emphasis is being placed on the value of
community-level experience and expertise. The greatest source of knowledge
about how best to respond to HIV, the so-called “lessons learnt,” is
increasingly recognised as residing not at the level of national or
international discourses, but at the level of community and individual
experience. In this light, the principles of genuine civil society
participation in the response to HIV/AIDS should not be overlooked.
The
deliberations of this group of 31 organizations, networks and individuals is
just one way that civil society is participating in the UNGASS process. Other
forms of participation include the following:
¨ A
few governments have included representatives of civil society organizations or
people living with HIV/AIDS in their UNGASS delegations.
¨ Some governments
have included a dialogue with civil society as part of their national
preparations for UNGASS.
¨ Detailed
feedback and commentaries have been provided by civil society organisations and
individuals, in the form of numerous position papers and comments in response
to various UNGASS-related documents.
¨ Specific
events have been organised at the national, regional and international levels
to discuss the priorities of the epidemic as they pertain to the various documents
prepared for UNGASS, including the draft Declaration. The resulting position
papers have been widely distributed.
A
detailed rationale for civil society participation in UNGASS, and a description
of the ways in which formal UN documents have explicitly encouraged and
supported this participation, are included in Annex II.
We
fully agree, as is stated in the preamble of the draft Declaration, that the
global HIV/AIDS epidemic, through its devastating scale and impact, constitutes
one of the most formidable challenges to humanity and to the future of
humanity, since it undermines social and economic development throughout the
world, creates unbearable human suffering and affects all levels of society.
We
believe that the draft Declaration contains many worthwhile principles and
goals. However, we believe that it falls short of what is needed. We do not
believe that the draft Declaration adequately reflects the urgency and critical
nature of the epidemic. We also do not believe that it adequately reflects the
feedback that civil society has already provided concerning the priorities for
responding to the epidemic.
This
group of 31 civil society organizations, networks and individuals strongly
urges the President of the General Assembly, the two facilitators of the UNGASS
meeting, and Members States to fully consider and integrate the perspectives of
civil society in re-drafting the Declaration of Commitment.
We
offer the following comments and suggestions in an effort to improve the
Declaration and to make it a credible document for guiding the future response
to HIV/AIDS of governments, organisations and individuals. These comments were
compiled with reference to civil society inputs previously shared through the
Break-the-Silence email discussion forum. A synthesis of this separate input is
available at http://www.hdnet.org
2.0 Guiding Principles
Our deliberations were based on the following guiding principles.
We hope that these principles will guide the drafting of the final Declaration
of Commitment.
¨
The meaningful
involvement and participation of people living with HIV/AIDS and people from
affected communities is crucial to all levels of decision-making, planning,
implementation, service delivery and evaluation.
¨
An effective response
to HIV/AIDS requires the participation of communities, non-governmental organisations
(NGOs) and community-based organisations (CBOs) as meaningful partners in all
levels of decision making, planning, implementation, service delivery and
evaluation.
¨
Long-term and
meaningful initiatives to address HIV/AIDS prevention, care and support needs
require the full participation of youth in decision-making, planning,
implementation, monitoring and evaluation of HIV/AIDS policies and programmes.
¨
The response to
HIV/AIDS should be framed within a human rights-based approach, paying
particular attention to poverty and gender issues, and measures to decrease
denial, stigma and discrimination.
¨
An effective response
to HIV/AIDS depends upon political commitment and action at all levels and
across all sectors, and requires strong leadership to ensure coordination and
sustained action.
¨
Funding for the
response to HIV/AIDS must be substantial, must be sufficient to address the
needs of the epidemic, and must be sustained.
¨
HIV/AIDS policies and
programmes should respond to local needs, realities and contexts, and should be
evidence-based.
¨
Cultural values that
empower, affirm identity and enhance human development should be acknowledged
and endorsed, while cultural practices that reinforce denial, discrimination
and imbalances in power should be condemned. Culture is not static; it needs to
evolve to survive, and it needs to be used positively to respond to the
HIV/AIDS epidemic.
¨
Responses to HIV/AIDS
need to recognize that treatment, care and support are inextricably linked to
prevention and to impact alleviation.
¨
HIV/AIDS prevention and
care responses should be linked to and integrated with tuberculosis control
strategies and STD management programmes.
¨
Responses to HIV/AIDS
must use the tools available to address today’s needs and, at the same time,
develop new technologies and methods to better address these needs in future.
¨
Repressive policies are
an obstacle to effective HIV/AIDS programming and should be removed.
3.0 Detailed Feedback on the Draft Declaration
3.1 General Comments
¨
The
draft Declaration acknowledges the importance of human rights issues by
including a section on HIV/AIDS and human rights, and by referring to a
rights-based approach in the preamble. However, the adoption of a rights-based
approach means that the entire response to HIV/AIDS should be developed within
a rights-based framework. It also means that measures to address human rights
and legal and ethical issues need to be integrated into each section of the
Declaration (leadership, prevention, care and support, reducing vulnerability,
etc.) The draft Declaration will need to be amended to reflect this. The
Declaration should also note that the Framework for Global Leadership on
HIV/AIDS identifies the respect, protection and fulfilment of human rights as
its foundation.
¨
The
draft Declaration does not make any mention of the impact of the epidemic on
indigenous peoples and their role in responding to HIV/AIDS.
3.2
Preamble
¨
In
the clause on previous commitments, in addition to the declarations and other
documents listed, the text should refer to the Universal Declaration of Human
Rights, international and regional human rights treaties and conventions, the
International Guidelines on HIV/AIDS and Human Rights (E/CN.4/1997/37)and
relevant resolutions of the Commission on Human Rights (including
E\CN.4\2001\L.50 and E\CN.4\2001\L.69), particularly those that refer to the
rights to health and to life.
¨
The
clause on the people affected by HIV/AIDS would be improved if “rich and poor”
were replaced with “without distinction based on social or economic status.”
¨
The
list of international public goods in the clause on effective prevention and
care strategies should include clean needles and syringes.
¨
The
text should specifically recognize the positive contribution of people living
with HIV/AIDS to the response to the epidemic.
¨
The
clause on Africa should be strengthened. The following wording is suggested:
“Recognizing that Africa is the worst affected region; that the majority of its
countries are overburdened by debt and by populations sunk in poverty, which
almost obliterates any impact from intervention programmes; and that this
dramatic situation on the continent needs an appropriate and urgent response;”
¨
Specific
clauses should be added to cover other seriously affected regions of the world.
The following wording is suggested:
§ “Recognising that South Asia, South-East Asia, East
Asia, Central Asia, and Central and Eastern Europe also stand at serious risk
of rapid and serious expansion of their HIV/AIDS epidemics and that these
regions also require an appropriate and urgent response, particularly given the
knowledge that their epidemics are largely driven by drug use and given the knowledge
that drug-fuelled HIV epidemics spread much more rapidly than
sexual-transmission-related epidemics;”
§ “Recognising that
Latin America, particularly Central America and the Caribbean, is also facing a
rapid growth of the epidemic, especially amongst men who have sex with men,
women, mobile populations, sex workers and disenfranchised ethnic groups;”
§ “Recognising the
increasing growth of the epidemic in the Pacific Region and the vulnerability
and special needs of small Pacific Island nations, and the urgent need to
develop the capacity of these nations to respond to HIV/AIDS;”
3.3 Leadership
¨
This
section should acknowledge the importance of (a) traditional leadership and (b)
leadership by youth.
¨
This
section should acknowledge that leadership from non-governmental organisations,
community-based organisations and persons living with HIV/AIDS is fundamental
to forming effective partnerships and must be nurtured and supported.
¨
In the
text on leadership at the national level, the reference to the involvement of
civil society and persons living with HIV/AIDS should be strengthened. Rather
than referring to this involvement as one aspect of the development and
implementation of multisectoral strategies and financing plans for combating
HIV/AIDS, the text should state that these strategies and plans should be
developed through proactive partnership with civil society and the full and
central participation of persons living with HIV/AIDS.
¨
The
declaration should encourage and support initiatives to establish national
multisectoral forums for open debate and dialogue on HIV/AIDS and promotion of
intersectoral collaboration, using appropriate information and communication
technologies.
¨
The
text on leadership at the global level should state that countries with greater
resources should take responsibility to assist countries with fewer resources
to respond to the epidemic.
¨
The
text on leadership at the global level should call for support for greater
collaboration with and coordination among non-governmental organizations,
community-based organizations and persons living with HIV/AIDS.
3.4
Prevention
We present comments on each of the three paragraphs in this section.
Paragraph
on the development of national targets
¨
The
text should state that national targets and priorities should be based on
epidemiological evidence.
¨
The
list of groups vulnerable to HIV infection should be comprehensive. At a minimum,
the following groups should be added to those already shown: prisoners, female
and male sex workers, migrant populations and refugees, and disenfranchised
ethnic minorities.
¨
The
text should refer to the responsibilities of men and boys (not just to their
involvement).
Paragraph on prevention
interventions
¨
The
text should state that these interventions should be community-led and -owned.
Communities need to be involved at all stages.
¨
The
text should state that vulnerable populations should be actively involved in
the interventions from design through to implementation and evaluation.
¨
The
text should call for a three-tiered approach to interventions:
§
information,
education and communication as awareness-raising tools;
§
risk-
and harm-reduction strategies that facilitate safer sexual and drug use
behaviours; and
§
political
leadership, commitment and action to address legislative, cultural and economic
factors that increase vulnerability to HIV/AIDS.
¨
The
list of prevention interventions should include (a) the availability of sexual
health information, including sexual education and empowerment programmes in
schools; and (b) treatment to prevent mother-to-child transmission.
¨
Specific
targets should be included in this section with respect to coverage of the
prevention interventions listed in the section.
¨
The
list of essential commodities should include microbicides, clean needles and
syringes, drug substitution programmes and lubricants.
¨
The
text should state that services and commodities must be accessible by all
vulnerable groups and must be appropriate to those groups.
¨
This
section should call on governments to support efforts by researchers and
affected communities to continue to explore new and additional prevention
approaches.
¨
The
text should state that prevention interventions should be linked to care,
treatment and support programmes and to programmes designed to mitigate the
impact of the epidemic.
Paragraph
on specific targets to reduce infections among newborns
¨
The
dates for the attainment of these targets should be moved forward (i.e.,
earlier than 2006 and 2011). The necessary treatments are available and the
cost in minimal, so there is no reason why these dates should not be advanced
significantly.
¨
The
text should mention the need to ensure that treatment of HIV-positive mothers
needs to be continued after the births of their children. (Alternatively, this
point could be made in the section on Care and Support.)
¨
A new
target should be added: The Declaration should call for a 20% reduction by 2010
in the number of new infections among the vulnerable groups listed in this
section.
3.5
Care and Support
¨
The
word “treatment” should be added to the title of this section (“Care, Treatment
and Support”) in order to reflect the importance of treatment issues.
¨
The
opening statement in this section should be strengthened by the addition of a
reference to the link to prevention. The following wording is suggested: “Care,
treatment, and support are linked to prevention and are inseparable elements of
an effective response.”
¨
With
respect to access to treatment:
§ The text should
state that quality essential medicines should be available for all people living
with HIV/AIDS (not just those who are symptomatic).
§ The text should
call for access to essential medicines, including antiretroviral therapy and
treatments for opportunistic infections, sexually transmitted infections and
tuberculosis.
§ The date for
achieving substantial and measurable increases in access to essential medicines
should be advanced. The current date in the text (2003) does not reflect the
urgency of this issue.
¨
The
text should state that comprehensive care, treatment and support strategies
should be developed with the participation of people living with HIV/AIDS,
affected communities, non-governmental organisations, the private sector and
international organizations.
3.6 HIV/AIDS and Human
Rights
¨
The
Declaration should acknowledge that the overall response to HIV/AIDS needs to
be framed within a human rights-based approach and that measures to enhance
human rights need to be included in all sections of the Declaration (see
General Comments above).
¨
In
addition to acknowledging the link between human rights and vulnerability, the
text should state that respect for human rights reduces the impact of the
epidemic on those infected and affected by HIV/AIDS.
¨
This section should call on governments to take all
necessary steps (by 2004) to ensure the respect, protection and fulfilment of
HIV-related human rights of people living with HIV/AIDS and of all groups
particularly vulnerable to HIV/AIDS – including women, men who have sex with men,
injecting drug users, sex workers, children, prisoners and migrants – as
outlined in the Universal Declaration of Human Rights and international
treaties and conventions, and reflected in the International Guidelines on
HIV/AIDS and Human Rights and relevant resolutions of the UN Commission on
Human Rights. It is important to ensure that the vulnerable groups listed above
are specifically named in this section of the Declaration.
¨ In addition to
calling for new and strengthened laws, this section should call for measures to
ensure that these laws are applied, and for measures to ensure that speedy
civil remedies are available to deal with violations of these laws.
¨
This
section should call for measures (by 2004) to implement and support legal support services that will educate people
affected by HIV/AIDS about their human rights, provide free legal services to
enforce those rights, develop expertise on HIV-related legal issues and utilise
means of protection in addition to the courts, such as offices of ministries of
justice, ombudspersons, health complaint units and human rights commissions.
3.7 Reducing
Vulnerability
¨
The
list of factors that make individuals or groups vulnerable to HIV infection
should include punitive and repressive policies.
¨
This
section should call for measures (by 2004) to increase access by young people
to sexual health education and services, and information and education on drug
use.
¨
The
text should specify that programmes to reduce vulnerability should be provided
to the following vulnerable groups: young people, women and girls, men who have
sex with men, male and female sex workers, injecting drug users, prisoners,
migrant populations and refugees, disenfranchised ethnic minorities, internally
displaced persons, and people separated from their families due to work or
conflict.
3.8 Children Orphaned
by HIV/AIDS
¨
It
should be clear (in the heading and elsewhere) that this section includes not
only children orphaned by HIV/AIDS but also children infected and affected with
HIV/AIDS.
¨
The
section should call for the participation of children in programme planning and
implementation. Experience has shown that such participation improves
programmes and makes them more relevant to children’s needs.
¨
This
section should refer to gender issues in the context of children, including (a)
the increased vulnerability of girls, (b) the increased impact of the epidemic
on girls, and (c) sexual and violent abuse of children.
¨
The
date for the development and implementation of national strategies should be
advanced from 2004 to 2003.
3.9 Alleviating Social
and Economic Impact
¨
This
section deals primarily with workplace issues. It should be broadened to
include:
§
measures
to address the social impact of HIV/AIDS on families and communities;
§
programmes
to reduce poverty; and
§
measures
to address gender issues – i.e., the disproportionate impact on HIV/AIDS on
women.
¨
With
respect to the second paragraph in this section, people living with HIV/AIDS
and civil society should be included in the list of groups to be consulted on
the development of legal and policy frameworks.
¨
This
section should call for the review of UN and other treaties that have a
negative impact on efforts to address HIV/AIDS (including, in particular,
treaties on illicit drugs).
3.10 Research and Development
¨
This
section of the Declaration should call for greater developing country
involvement and ownership in research and development processes and should
state that this is an urgent issue. Specifically, the text should state:
§
that
developing countries should have access to information and other products
emanating from the research;
§
that
measures will be taken to enhance the capacity of developing countries to
undertake research; and
§
that research
in developing countries should meet ethical standards.
¨
This
section should call for enhanced global coordination and collaboration on
research, particularly among developing countries.
¨
The
text should state that there is an urgent need to increase investment in
research and development. Billions of new dollars are required (over and above
any amounts included in the Resources section of the Declaration).
¨
The
text referring to the development of new preventive and therapeutic approaches
should list therapies for the treatment of HIV infection, other STDs and
opportunistic infections alongside vaccines and microbicides; all three
are equally important.
¨
This
section should call for reforms of drug regulatory systems to speed up the
process for approving clinical trials and new drug submissions; it should state
that the target for approval of new drugs should be six months; and it should
call for greater harmonisation of the drug approval process among countries.
3.11 HIV/AIDS in Conflict Affected
Regions
¨
This
section should refer to the need to address the issue of sexual violence
perpetrated by armed forces personnel, including particularly sexual violence
used as part of ethnic cleansing campaigns.
¨
The
call for strategies to address the rapid spread of HIV amongst national
uniformed services should be extended to include peace-keeping forces.
3.12
Resources
¨
The
text should state that funding for HIV/AIDS constitutes an investment in
communities and societies.
¨
The
text should include a call for the investment of sufficient resources to meet
the challenges of the epidemic and a substantial increase in annual spending on
HIV/AIDS activities.
¨
The
text should call on developed countries to set the level of their official
development assistance at 0.7% of gross national product. It should state that
countries that are below this level should set graduated annual targets
designed to reach this level.
¨
The
text should state that at least 25% of resources at the national level should
be allocated to non-governmental organisations, community-based organisations
and organisations of persons living with HIV/AIDS.
¨
The
text calling for the establishment of a Global AIDS Fund should state:
§ that the fund
should be ongoing (as opposed to one-time);
§ that at least USD
$10 billion should be invested each year (increasing over time); and
§ that
non-governmental organisations, community-based organisations and organisations
of persons living with HIV/AIDS should play an active role in the governance of
the fund.
3.13
Follow Up
We present comments on each of
the three parts of this section.
At
the national level
Rationale for Civil Society Participation
in the UNGASS Process and in the Response to HIV/AIDS
Promoting
multisectoral national responses to HIV/AIDS and the active involvement of
civil society have been consistent and dominant features of international
HIV/AIDS discourses since the beginning of the epidemic.
During
the 1980s, for example, the Global Programme on AIDS of the World Health
Organisation (WHO/GPA) cooperated prominently with non-governmental
organizations (NGOs) formed in order to respond to HIV/AIDS. WHO/GPA played a
facilitating role in the creation of the International Council of AIDS Service
Organizations (ICASO), the Global Network of People Living with HIV/AIDS
(GNP+), and the International Community of Women Living with HIV/AIDS (ICW),
and provided important impetus to the almost immediate recognition of these
organizations as legitimate stakeholders.
The
earliest international discourses specifically mention the need to involve NGOs
in the national and inter-governmental responses to HIV/AIDS, as exemplified by
the following text from the Global AIDS Strategy in 1985:
"Nongovernment
organisations, including voluntary, community-based associations, can play a
vital role in promoting safer sexual practices and providing support for
persons affected by HIV/AIDS. Their particular strength lies in their
access to individuals and communities and in their credibility, without which
behaviour change and its maintenance are so much harder to achieve.
Associations of persons living with HIV or AIDS have a unique credibility in
this regard. It is therefore essential that all relevant parties,
governmental, intergovernmental, and non-governmental, forge partnerships to
ensure the genuine involvement of community-oriented organisations that are
already working on AIDS or that have the potential to do so."
The
tone of statements such as this has not changed significantly in the
intervening years. The preamble to the current draft UNGASS Declaration of
Commitment
says:
"Affirming
that strong partnerships involving Governments, the United Nations system, intergovernmental
organisations, non-governmental organisations, the business sector, community
and faith-based organizations are important;"
However,
defining close working relations with civil society remains difficult for many
governments and even for international agencies. Today, over twenty years into
the response to HIV/AIDS, the UN General Assembly special session (UNGASS) on
HIV/AIDS must go beyond merely acknowledging principles of civil society
participation. It must demonstrate a concrete commitment to the principle of
genuine multisectoral partnerships in the response to HIV/AIDS. Affirmative
action to fully recognize and integrate civil society perspectives into the
draft UNGASS Declaration of Commitment would illustrate the benefits of open and
transparent government-NGO partnerships and could lead to more productive
government-NGO collaboration at the country level.
We
must move beyond rhetorical statements about the involvement and participation
of civil society. NGOs must be integrally involved in setting the direction for
the response to HIV/AIDS. This is consistent with the models of health
promotion embodied in the 1986 Ottawa Charter on Health Promotion, the subsequent Jakarta Declaration, as well as the stated aims of
specialised agencies such as WHO:
“With
recognition that there is a conventional wisdom in every community, and that
people are able to think and act constructively in identifying and solving
their own problems, the emphasis on health education is shifting from
‘intervention’ to ‘community involvement’.”
What
Has Been Said About Civil Society Participation in the UNGASS Process
Documents
prepared in recent months as part of the UNGASS process have explicitly
supported and promoted the participation of civil society. The following are
extracts from these documents:
A)
UN General Assembly Fifty-fifth Session
Resolution
55/13 - 3 November 2000
Para12.
Recognizes the importance of the contribution of civil society actors in the
response to the epidemic at all levels, and in this regard underlines the need
for the active involvement of civil society representatives in the preparatory
process and the special session;
B)
UN General Assembly Fifty-fifth Session
Note
on the Special Session of the General Assembly on HIV/AIDS submitted by the
President of the General Assembly - 8 December 2000
Para26.
The special session may also consider other relevant documentation, for example
documents from various regional and subregional meetings on HIV/ AIDS which
have been made available to the preparatory process of the special session by
the respective organizations and bodies, as well as inputs from the civil
society organizations, as deemed necessary and feasible by the Member States
during the preparatory process
C)
Recommendations of the President of the General Assembly (from B. above):
Para49.
Member States should include representatives of civil society actors, people
living with HIV/AIDS or representatives of their associations, and
representatives of private sector in their national delegations to the special
session.
Para50.
In order to allow a maximum possible input by civil society actors and a wide
geographic coverage, efforts should be undertaken by the UNAIDS secretariat and
the Department of Public Information to establish an interactive electronic
discussion forum. Summaries of inputs from those discussions would be made
available to the preparatory process as informal inputs.
Para51.
Outcomes of relevant events of civil society shall be used as platforms for
input to the preparatory process and the special session, as well as to the
outcome document. A list of such events is already being updated and will be
included in the web site of the special session.
D)
UN General Assembly Fifty-fifth Session
Special
Session of the General Assembly on HIV/AIDS:
Report
of the Secretary-General
Para46.
Civil society has led the way on some of the most sensitive issues, such as
drug-related prevention, human rights promotion and protection of people living
with HIV/AIDS. NGOs have made significant contributions to the development of
appropriate models for community care and support. Along with several treatment
action groups, they have initiated advocacy programmes and placed the issue of
equitable and affordable access to care, treatment and support onto global and
national agendas. Civil society groups are also key actors in regional and
international partnerships, such as the International Partnership Against AIDS
in Africa.
E)
Global crisis - global action
Reversing
the HIV/AIDS epidemic: critical issues
Note
by the UNAIDS Secretariat
Para5.
To combat HIV/AIDS effectively, leaders in all countries and at all levels
should:
-
Involve people living with HIV/AIDS in shaping and driving forward efforts to
stem the epidemic both at the national level and within communities;
-
Develop concerted, multisectoral national HIV/AIDS programmes that improve
coordination among actors, avoid duplication and focus energy and resources.
Para6.Leadership
needs to be exercised at all levels of society. While effective action has to
start with high-level political leadership, this must cascade through
leadership at all levels and in all sectors. Community, religious, political,
media and private sector leaders should all be involved, supporting
community-focused efforts and empowering local responses.
F)
55/2. United Nations Millennium Declaration
Para30.
We resolve therefore
•
To give greater opportunities to the private sector, non-governmental
organizations and civil society, in general, to contribute to the realization
of the Organization’s goals and programmes.