Living with HIV in the time of COVID-19: Report from a survey of networks of people living with HIV

A survey by GNP+, ICW and Y+ Global found that networks of people living with HIV are using innovative ways to ensure their peers and their communities continue to have access to the critical services that they need. This report showcases their achievements.

59 networks of people living with HIV and community organisations from 37 countries took part in the survey throughout April and May 2020 and shared the challenges they are facing and the strategies they have put in place to support their communities.

Walking in our shoes

This report highlights the key factors that facilitate retention in care for women living with HIV and calls for increased focus on rights and dignity in care. The report presents the findings of community-led research related to the viewpoints and experiences of women who were initiated on antiretroviral treatment during pregnancy or breastfeeding and explores their perspectives on factors that have enabled them to successfully adhere to their treatment and retain in care.

The research for this report was coordinated jointly by GNP+ and the International Community of Women living with HIV (ICW) in partnership with ICW Eastern Africa and ICW Malawi and the Network of Zambian People living with HIV/AIDS (NZP+). This research, carried out by and for women living with HIV was conducted in three countries, Malawi, Uganda and Zambia, all of which are early implementers of the lifelong ARV treatment program (Option B+). Focus group discussions were held with women living with HIV who utilized services along with key informant interviews with healthcare workers, government representatives, international NGOs and community groups.

The aim of this research project is to develop a set of best practices on how healthcare systems can retain women living with HIV into lifelong care now that pregnant women living with HIV are being offered lifelong treatment. The report outlines from their own perspectives what factors help women living with HIV adhere to lifelong treatment and care.

Speaking Out: Nepal

Three decades after the first case of HIV was found in Nepal, HIV has become one of the most devastating diseases the country has ever faced. To date it is estimated that 40,000 people are living with HIV and nearly 4,000 have died of HIV-related illnesses in Nepal. Throughout this time, people living with HIV and key affected populations, have experienced and witnessed many violations of their human rights. The project, ‘Human Rights Count for Key Populations Living with HIV (KPLHIV)’, aims to document these violations, to aid advocacy against them and to devise long-term solutions.

Speaking Out: Kenya

In Kenya, networks of key populations and people living with HIV decided to focus on human rights violations among female sex workers living with HIV. Interviews with 30 sex workers living with HIV in six counties – Nairobi, Mombasa, Kiambu, Machakos, Kisumu and Busia – brought to the surface the many human rights violations female sex workers living with HIV face while accessing healthcare services, and violations by law enforcement officers.

Based on real life examples of violations, the Kenyan networks defined recommendations to promote the right to healthcare and access to justice, and to reform laws and policies.

Malawi: Positive Health, Dignity and Prevention

Findings and recommendations from studies led by people living with HIV

This report presents the findings of the PHDP survey in Malawi. It describes the experiences of PLHIV in the context of the national scale up of HIV testing, care and treatment with highlights of the important linkages between prevention, treatment, care, support and human rights. This can be used to inform evidence based PHDP programming. The findings of the study were analyzed in relation to the following PHDP components: empowerment, gender equality, health promotion and access, human rights, prevention of new infections, sexual and reproductive health and rights, and social and economic support.

The research was carried out by the Malawi Network of People Living with HIV (MANET+), with support from the Global Network of People Living with HIV (GNP+), conducted a cross-sectional survey among PLHIV to document their experiences in relation to Positive Health, Dignity and Prevention (PHDP) which promotes holistic health and wellness, including human rights, legal protections, policy environment free of stigma and discrimination for PLHIV as well as access to HIV treatment, care and support services and by doing so contributes to the health and wellbeing of their partners, families and communities.



Global Action with Local Impact: Why Advocacy Matters 2011-2014

This report examines the role of global-level advocacy in addressing HIV among key populations, including people living with HIV (PLHIV), people who inject drugs, sex workers, and lesbian, gay, bisexual, and transgender (LGBT) people. Entitled “Global Action with Local Impact: Why Advocacy Matters,” the report details strategies used and outcomes achieved by five constituency-led global network organizations focused on key populations, providing numerous case study examples illustrating the concrete impact of advocacy at the global level.

The report focuses on global-level work conducted as part of the Bridging the Gaps program, an international multi-agency effort devoted to achieving universal access to HIV services and ensuring full human rights for key populations. Supported by the Netherlands Ministry of Foreign Affairs, the program is a collaboration between five Dutch-based organizations, five global key population networks, and 80 grassroots organizations across 16 countries.

The report includes principles of practice for global advocacy and a detailed theory of change depicting causal chains that lead to improvements in health and human rights for key populations. Numerous examples of global advocacy are included with a focus on concrete results of global advocacy initiatives. All work featured in the report was conducted by Bridging the Gaps global partners: the Global Network of People Living with HIV (GNP+), the International Network of People Who Use Drugs (INPUD), the Global Network of Sex Work Projects (NSWP), the MSMGF, and the International Treatment Preparedness Coalition (ITPC).

More information on each of the other global key population networks featured in the report can be found on their respective websites: INPUD (;  NSWP (; the MSMGF (; and ITPC ( 

Family Planning Services and Prevention of Vertical Transmission – Cameroon, Nigeria and Zambia

A new report released by the Global Network of People Living with HIV (GNP+), the International Community of Women Living with HIV (ICW), and other local network partners, calls for dignity and rights in family planning programmes for women living with HIV in Cameroon, Nigeria and Zambia. that calls for discrimination-free family planning services for women living with HIV. The study examined the experiences of women living with HIV in accessing family planning services.

Building a safe house on firm ground – WHO consultation report with women living with HIV

In mid-January 2015, women living with HIV came together with the World Health Organisation (WHO) to consult and give input to a global survey on sexual and reproductive health and human rights of women living with HIV. Dr Manjulaa Narasimhan of WHO’s Reproductive Health and Research Department led on conducting the survey, which will inform WHO as it updates its 2006 guidelines on this topic.

HIV Leadership Through Accountability Planning & Review Meeting of Networks of People Living with HIV and Civil Society Partners 2011

The 3rd HIV LTA Planning and Review Meeting marked a new stage in the evolution of the LTA programme, with the first round of countries that joined the programme sharing their expertise and taking on mentorship roles to the other countries. In addition, they shared key findings and strategized about how civil society and the national networks of PLHIV should work together to plan and implement evidence-based advocacy and campaigns.

Available in English and French

Evaluation of ERNA

During the European Regional Red Cross & Red Crescent Conference in 2002 held in Berlin National Societies made a unanimous decision to focus on both HIV/AIDS and TB and to strengthen the network to support these activities. This was further reiterated during the 14th International AIDS Conference in Barcelona in 2002 when the Federation publically reaffirmed their on-going commitment and involvement in the fight against HIV/AIDS.

This is the first formal evaluation of ERNA (European Red Cross & Red Crescent Societies Network on HIV/AIDS &TB) since its formation in the late 1990s. It covers principally the previous 4 years (since 2007) and is based on terms of reference developed during the September 2010 General Meeting in Minsk, which include reviewing relevance, effectiveness, efficiency and impact of the network in relation to the ERNA Terms of Reference.

Available in English and Russian

Consultation on WHO ART Guidelines: Defining Standards of Treatment and Care E-consultation

This report presents the key points and recommendations that emerged during the e-consultation on the forthcoming revision of the WHO’s Recommendations for Antiretroviral Therapy (ART) for HIV Infection in Adults and Adolescents (ART Guidelines), held between July 27th and August 16th, 2009. The e-consultation was organised by the Global Network of People Living with HIV (GNP+) and hosted by NAM. It aimed to gather the perspectives and values of people living with HIV (PLHIV) related to the upcoming revision to the ART Guidelines.

Consultation on WHO ART Guidelines Defining Standards of Treatment and Care

PLHIV see huge benefits in treatment and know that eventually they will need to take ARVs. But in the Asia Pacific region there is some reluctance to start treatment earlier based purely on some practical issues. In starting they want to be assured there will be nothing that will threaten their long term treatment effectiveness related mainly to resistance and the need to rely on second-line regimens which are either not available or not affordable right now. People are also very aware of side effects and their fear of them causes a reluctance to take treatment until it is ‘really necessary’.

They do not believe that guidelines should be compromised by lack of financial and other resources and that the new guidelines should be based on ‘best practice’. If this seems at odds with the first statement, it is because they aspire to optimum treatment but live with the day-to-day practicalities of what is possible, even if it is not optimal

Consultation on WHO ART Guidelines: ‘Voting with your feet on antiretroviral treatment’

This report presents the key points and recommendations that emerged during the ‘Voting with your feet on antiretroviral treatment’ meeting, a technical consultation on the upcoming revision of the WHO’s Recommendations for Antiretroviral Therapy (ART) for HIV Infection in Adults and Adolescents (ART Guidelines), held 20 July, 2009 during the International AIDS Society Meeting in Cape Town.

Positive Prevention by and for People Living with HIV

This working paper is intended to help build consensus among networks, groups and individuals living with HIV around what positive prevention means and how positive prevention can be better addressed within broader HIV prevention policies and programs. It will review existing conceptions of positive prevention, which have tended to center on the needs of people who are HIV-negative or who are HIV positive but not yet aware of their status, and which have mostly been developed by experts without the involvement of people who know they are living with HIV. This document will propose a different way to think about positive prevention, recommend specific services that should be included in a positive prevention package, and identify areas where further research and/or debate is needed.

Donor Consortium Conference Report 2006

The Donor Consortium Conference, held 16-17 March 2006 in Noordwijk, the Netherlands, was organized and hosted by GNP+ in partnership with UNAIDS and the Netherlands Ministry of Foreign Affairs and with support from AIDS Fonds Netherlands. It was structured primarily to broaden donor awareness of the activities of three key organisations run by and for people living with HIV/AIDS (PLWHA): GNP+, the International Community of Women living with HIV/AIDS (ICW), and the International Treatment Preparedness Coalition (ITPC).

More than 50 people from some 20 countries attended the meeting, which featured an opening address by UNAIDS Executive Director Peter Piot. Attendees included PLWHA working with GNP+, ICW, ITPC and their affi liated networks; other HIV treatment and prevention advocates; and representatives from donor entities across the bilateral, multilateral, and for-profit spec-trums.

The overall goal of the meeting was two-fold:
1) to identify and remove obstacles limiting donors’ understanding of the extensive – and growing – role of the three organizations in addressing issues of importance to PLWHA around the world; and
2) to provide donors with an opportunity to outline their funding priorities and objectives in regard to HIV/AIDS issues, notably those associated directly with PLWHA networks and community groups. During and after a series of presentations about the organizations, discussion focused on the following areas:

• the challenges that the PLWHA movement faces and how these might best be met;
• the level and kind of support, fi nancial and otherwise, that might enable PLWHA organizations to continue and improve their outreach and advocacy efforts; • potential strategies to create consistent and sustainable partnerships among PLWHA organi- zations and donors; and
• the future roles and responsibilities of all partners involved in shaping a meaningful global response to HIV/AIDS.
In general, participants agreed that as PLWHA organisations become more assertive and knowledgeable about donors’ expectations and interests, they will in turn benefit greatly from donors’ increasingly proactive engagement. The dialogue initiated at the Noordwijk meeting marks the start of a vital process and potentially heralds new thinking about goals and partnerships involving all entities focusing on HIV/AIDS issues.
This report is not intended to provide in-depth coverage of the entire conference. Instead, it summarizes the following: • key issues and concerns raised during presentations by representatives from PLWHA organizations, including GNP+, ICW, ITPC and the Collaborative Fund for HIV Treatment Preparedness; • key issues and concerns raised by donors, especially in terms of what they need from PLWHA organisations in the future to increase the likelihood of extensive, sustainable support; and • proposed action steps, both short- and longer-term, to build on the momentum established at this initial gathering. Participants agreed to establish a working
group to set a preliminary timeline and to recommend concrete steps and policies to move the process forward.