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UNAIDS has established an Advisory Group to support the Multi-stakeholder Task Force that will be facilitating civil society involvement in the upcoming UN General Assembly High-Level Meeting on HIV/AIDS. The group consists of individuals working, among others, in the areas of paediatrics and HIV, UHC, human rights, gender equality, academia, youth leadership, and more.

The high-level meeting will take place on 8-11 June 2021. The meeting will lead to a clear and action-oriented political declaration will be agreed upon by member states to advance towards achieving the commitment of ending the AIDS epidemic by 2030. 

List of advisory group members:

Anton Basenko, The Alliance for Public Health, Ukraine – basenko@aph.org.ua

Rita Wahab, MENA-ROSA, Lebanon – menarosa696@gmail.com

Cedric Ninanhazwe, Y+, Netherlands – harunaaaronsunday@gmail.com 

Justin Koonin, UHC Civil Society Engagement Mechanism, Australia – president@acon.org.au

Javier Hourcade, Latin America HIV/AIDS Alliance, Argentina – javier.bellocq@gmail.com

Catherine Conner, Elizabeth Glaser Pediatric AIDS Foundation, US – cconnor@pedaids.org

Catherine Nyambura, ATHENA Network, Kenya – cathynyamb@gmail.com

Ferenc Bagyinszky, AIDS Action Europe, Germany – ferenc.bagyinszky@dah.aidshilfe.de

Fionnuala Murphy, Frontline AIDS, UK – fmurphy@frontlineaids.org

Trevor Straton, International Indigenous Working Groups on HIV/AIDS, Canada – trevors@caan.ca

REV’D FR Johannes Mokgethi-Heath (JP), UNAIDS Human Rights Reference Group/Act Church, Sweden – jp.mokgethi-heath@svenskakyrkan.se

On 23 February, the General Assembly adopted resolution 75/260 on the organisation of the 2021 High-Level Meeting on HIV/AIDS (HLM). The resolution calls for the HLM to be held on 8-10 June 2021 and invites Member States to participate. To promote meaningful contribution of civil society in the entire process, UNAIDS decided to contract a civil society or community-led organisation with recognised experience in the global AIDS response. Last week, GNP+ and Aidsfonds were selected as the NGO co-coveners to collaborate with UNAIDS on bringing CSO’s and communities together in the entire HLM process.

About HLM2021 

The goal of the HLM is to develop a clear and action-oriented political declaration to be agreed upon by member states towards achieving the commitment of ending the AIDS epidemic by 2030. 

The 75/260 resolution on the organisation of the HLM requests the President of the General Assembly (PGA) to organise and lead an interactive multi-stakeholder hearing (MSH) with the participation of communities and other stakeholders, taking place no later than April 2021. The PGA will also envisage other civil society participation opportunities during the preparation process and the HLM itself. The interactive MSH will be held on 23 April 2021. In light of the COVID-19 pandemic, the MSH will be held in virtual mode, while the HLM Is likely to take a hybrid form.

Communities and CSO’s participation in the HLM 

UNAIDS has convened a Multistakeholder Task Force (MSTF) comprising of 16 members who are representatives from civil society and the private sector to facilitate civil society involvement in the upcoming HLM. The MSTF will advise UNAIDS, as the lead substantive UN entity, and through it, the Office of the President of the General Assembly, regarding the format, theme and programme of the multi-stakeholder hearing (MSH), as well as help identify speakers for the MSH and HLM plenary and panel discussions. 

UNAIDS has also established an Advisory Group to support the Multistakeholder Task Force. Members who served in the 2016 Task Force and experts with previous experience in HLM and other UN processes were invited to participate in the Advisory Group contributing in their personal capacities.

The GNP+ and Aidsfonds as co-conveners of the Multistakeholder Task Force (MSTF), will organise a series of events in the coming weeks to facilitate inclusive and interactive participation of civil society in the HLM process:

  1. Regional update webinars to brief civil society and communities on the progress made so far in terms of the work of the MSTF and the planning for the MSH and the HLM.
  2. Community participation survey to gather civil society input for the development of a common civil society ‘vision document’ for the HLM. 
  3. Community advocacy guide to be finalised and shared on this website to support country- regional- and global civil society engagement and participation
  4. Community consultation webinars to create awareness and promote wider participation

For more information see our dedicated webpage.

The Global Network of People Living with HIV (GNP+) welcomes the adoption of the Global AIDS strategy 2021 – 2026 by the UNAIDS Programme Coordinating Board (PCB) and commits to working together with all global health actors to achieve the goal of ending AIDS by 2030.

GNP+ applauds the outstanding consultative work done by UNAIDS and all stakeholders in developing this strategy. Our network members have participated at many points in the process and we feel heard in the new strategy. The greater and meaningful involvement of people living with HIV is central to improving the quality of our lives, and we are pleased to see our voices and advocacy efforts acknowledged.

Jacquelyne Alesi, Board Chair, GNP+, says “These are not easy times – many of our communities are dealing with the impact of multiple challenges of COVID-19, loss of jobs, hunger, humanitarian and environmental crisis. Even as governments focus on these challenges, we must not allow them to back track on the progress made on HIV and TB. This past year has reminded us once again of the human cost of inaction”. 

The focus on having all our communities – key populations, children, young people, adolescent girls and women – as allies and partners is extremely important to us. And most of all we strongly endorse the focus on addressing inequalities in order to end AIDS. However, this will not be easy and will require the resources and bold action by governments, the UN system, communities working collaboratively.

We all know the right to health is inextricably linked to other human rights. People who experience stigma and discrimination because of any part of their identity – their race, their gender identity, their sexual orientation or if they do sex work or if they use drugs – cannot access treatment and prevention services precisely for reasons of discrimination on these grounds.

At GNP+ we strongly believe that the response to a 40-year old HIV epidemic needs to be guided by proven community-led, people centred approaches that dismantle the inequalities in our societies.

As global health leaders engage and work towards the UN High Level Meeting (HLM) on AIDS in June, GNP+ calls for a stronger commitment from governments, donors and other stakeholders to invest in actions to back this strategy. We also call for a bold accountability framework so that communities of people living with HIV and key populations can monitor and evaluate the impact of this strategy on their lives. 

On Friday 19 March 2021, the Global Fund released a statement and a report by their OIG detailing misconduct – sexual exploitation and corruption – at NAP+ in Ghana during the implementation of their 2010-2019 grants.

As the Global Network of People living with HIV, we are dismayed at the findings of the report and condemn the sexual exploitation and abuse of women living with HIV. It is important that these corrupt and abusive practices have been uncovered and we stand by the women who courageously reported the abuse despite the threats and harassment. 

Since these incidents were first uncovered, NAP+ Ghana have undergone a governance overhaul and with support from the Ghana AIDS Commission, new leaders were elected in September 2020. 

The new women-led team are taking this issue very seriously and want to put in place actions to help ensure that such abuse and exploitation does not take place in the future. 

We know that organisations across all sectors, including community networks need to do more to end all forms of sexual exploitation and abuse. GNP+ and the Network of African People living with HIV West Africa (NAP+WA) are supporting NAP+ Ghana in its efforts. We are also using this opportunity to strengthen our own networks and to contribute to addressing safeguarding issues within our community at large.

We are committed to ensuring a survivor-centred approach – ensuring that their safety, confidentiality and wellbeing is central in all prevention and protection measures against sexual exploitation and abuse. 

Community organisations must be better supported by global and national partners to put in place safeguarding measures that prevent abuse and keep people safe. As the HIV sector, we must all prioritise building a culture of accountability across our organisations and structures.

The winds of change are blowing through GNP+. We want to drive accountability and inclusivity within our organisation, and where better to start than our Executive Leadership. We are looking for a new Executive Director or Co-Directors to share the role and lead us on the next part of our journey. 

“Shared leadership is becoming more common in the not for profit sector it can encourage accountability, collaboration, evidence-based decision making and sustainability” explains Jordan Stevenson, the GNP+ Human Resources Manager. 

There is a buzz of excitement around the idea at GNP+, with several staff and board members involved in the recruitment process sharing their thoughts. 

Jacquelyne Alesi, the Chair of the GNP+ Board says, “when role-share was first suggested as an alternative model of leadership I had questions – will this be efficient, what about egos, will it cause confusion with external representation? However, having looked at the idea in more detail I now see co-leadership through a new lens of mutual accountability, flexibility, and support – all central to a feminist leadership model.” 

What does this mean for GNP+?

It means that we are open to new ways of working and supporting new leaders to emerge. “If the role is shared between two people this will be a first for GNP+, another innovation to add to our organisation’s rich history” adds Flavia Kyomukama, a GNP+ Board Member and a member of the recruitment committee.  

As with any leadership model, the reality of shared leadership could bring benefits and challenges with it, including how to share responsibilities. Saima Jiwan, a member of the recruitment committee says she can see how a job share could work, “If they mark out clearly defined roles, both Executive Directors should be accountable to each other as well as having a shared sense of accountability with the rest of the GNP+ team.”

Cedric Nininahazwe, another member of the recruitment committee has first-hand experience: “Co-Leadership isn’t actually brand new to me as Y+ Global has had co-chairs in the past and it worked well. You have to work out the practical details but these things don’t make or break a boat. My interactions were usually limited to one of the co-chairs, but this is one of the “ways of working” within a co-leadership model.”

As Flavia Kyomukama, Board Member and member of the recruitment committee says, “what matters most is that we end up with a leader, or leaders, that can strategically drive GNP+ to new heights.”

What this means for our sector

It is our responsibility as GNP+ to do all we can to be diverse and inclusive and to stay true to the GIPA principle – the Greater Involvement of People Living with HIV/AIDS – on which we are founded.  

Ours is a small sector and opportunities for community members to take on leadership roles are rare. We hope that opening up to the possibility of a role share creates more opportunities for the community. By making it possible for two individuals with talents that complement each other to apply, we are creating a bridge for regional and national community leaders to move up to global leadership. We want to enable community members who might otherwise not consider applying to take that step together with someone. 

“One of the most valuable lessons we have learned as a Board is that we work as a team and we are never alone when GNP+ is faced with challenges. I believe in being open to having a team of Co-Directors we are creating a similar structure of support for our leaders.” Jacquelyne Alesi, Chair of the GNP+ Board.

Sophie Smallwood, Co-founder of Roleshare has held senior positions in management and she echoes this sentiment, “It can be a lonely place. What we want to do is bring the spirit of a team to leadership level.”

Recruitment committee members share that they are looking forward to sustainability in leadership, with Cedric Nininahazwe quipping in to say “the end goal is a feminist model that ensures equity in leadership and responsibility.” 

What this means for applicants

The role is open to individual applicants and people interested in job sharing, we are simply looking for the best person, or people, for the job and are keen to spread the net widely. One reason, GNP+ is taking a flexible approach to the recruitment process is to expand the talent pool, as Jordan explains, “we want to see new people with fresh thoughts and new approaches. Leaders of national or regional organisations may be better supported to make the step up to manage an organisation with global reach using a shared leadership model.”

GNP+ has teamed up with an innovative company – Roleshare – to help out. Roleshare supports people to connect, combine skills, and apply for roles together.  Roleshare matches people and skills together for roles. Helping companies retain and include overlooked diverse clusters of talent for roles, while also enhancing wellbeing and cross-pollination of skills.

Dave Smallwood, Co-founder of Roleshare explains, “many organisations offer job sharing in theory, but GNP+ is serious about this, they are saying ‘hey, if you want this, we can make it happen’”. 

Applicants interested in job sharing are asked to visit the Roleshare website to apply. There they will need to create a profile outlining their experience and skills. They can either apply together with someone they know or apply as an individual and Roleshare can help match them to another candidate. This is why building your profile is so important, so you showcase your skills and help Roleshare to find someone who would work well with you; a bit like a dating website.  

So, spread the word, GNP+ is looking for leadership for the future and the clock is ticking. The deadline for applications is 16 April – all the details about how to apply can be found here.

The global key population networks GATE, GNP+, INPUD, IRGT, MPact and NSWP mourn the untimely and tragic passing of activist, leader, and dear friend, Jude Byrne of Australia, who was taken from us too soon by cancer.

For over 40 years Jude was a leading activist for people who use drugs. She was also the board chair of INPUD, a global network of people who use drugs that fights for the human rights and dignity of people who use drugs around the world.

Jude was a passionate and brilliant activist who never hesitated to speak truth to power and fight for the rights of her community. She was an equally supportive and fierce ally to gay and bisexual men, people living with HIV, sex workers, and transgender people.

The global networks benefited greatly from its friendship with Jude. We join as global HIV and key population communities in grieving the loss of an inspiring and fearless leader. Jude’s passion and energy will be deeply missed, but her legacy will live on in us and in the many lives she touched around the world.

Rest in peace, Jude Byrne!

The Global Network of People Living with HIV (GNP+) welcomes the appointment of Andrew Spieldenner, PhD, as the Executive Director of MPact Global Action for Gay Men’s Health and Rights. 

We celebrate our shared history and activism from Andrew’s time at GNP+ North America, including his leadership of the People Living with HIV Stigma Index research in the US. Andrew is strongly committed to working with people living with HIV in all our diversity to strengthen our voices and expand the spaces where we are heard and able to be influential. 

“MPact has always worked closely with GNP+, and in my new role, I look forward to ongoing collaborations with GNP+. I have worked on the US implementation of the HIV Stigma Index, and it is an extraordinary opportunity and involvement in HIV stigma in-country. The Meaningful Involvement of People with HIV/AIDS (MIPA) is vital to moving the HIV response forward, and I am honored to be able to bring MIPA into my role at MPact”, said Dr. Andrew Spieldenner. 

“As a longstanding advocate of the rights of people living with HIV, Andrew brings immense personal and professional experience to the role, along with a deep understanding of the importance of community-led responses”, said GNP+ Vice-Chair, and MPact Board Member.

“GNP+ looks forward to strengthening our collaboration with MPact as Andrew takes up the reins to champion our shared goals.”

Dr. Spieldenner will take up his new role on 1 March 2021. GNP+ wishes Dr. Spieldenner and the MPact team all the best.

PLHIV Networks POZMagazine2
Dr. Andrew Spieldenner with US advocates discussing the value of PLHIV networks, for Poz Magazine (December 2013). Pictured from left: Jahlove Serrano, Deloris Dockrey, Dr. Andrew Spieldenner, Dr. Laurel Sprague, Robert Suttle, Reed Vreeland, Tami Haught. 
 

GNP+ PLHIV Stigma Index Advocacy Officer, Annah Sango, hosted love chats with women living with HIV in all their diversities for the #LovePositiveWomen campaign.

Since 2015, artists, activists, and HIV-positive women have come together for the LOVE POSITIVE WOMEN campaign by hosting workshops and events to show their love and support for women living with HIV. This year, GNP+ will participate in the campaign and initiate conversations with women living with HIV whose voices are often not heard. This may include women living with HIV, who also use drugs, are working as sex workers, are adolescent mothers, and trans women.  

Love chat aims to engage in intimate conversations with women living with HIV in all their diversities about self-love, sex positivity, and how this could impact agency and choice of options for prevention or treatment. We want the discussion to be about love for women living with HIV from the lens of sensual beings and not just vectors. 

Click on links below to watch all three episodes of Love Chats:

  1. Episode one with Annah Sango and Saidy Brown
  2. Episode two with Annah Sango and Amruta Soni
  3. Episode three Galentine Day special with Erika Castellenos and Florence Anam

The Global Network of People Living with HIV (GNP+) announces the departure of its Executive Director, Rico Gustav, at the end of January 2021.

The Board has put in place a plan for interim leadership and have full confidence in the staff team to continue to deliver on programming commitments and advocacy for the needs of communities living with HIV.  The Board will begin recruitment of a new Executive Director in the coming weeks and will play an active role in supporting the staff during this transition period.

We wish Rico well for the next chapter of his activism.

GNP+ is grateful for the solidarity and support of our partners as we continue our journey towards a world where all people living with HIV are able to enjoy their human rights and able to live healthy lives, free from stigma and discrimination. This past year has shown that GNP+’s fundamental mission to improve the quality of life for all people living with HIV remains as relevant as ever.

To mark Universal Health Coverage (UHC) day, the global networks of people living with HIV, GNP+, ICW and Y+ Global, have issued a joint report “Demanding health for all: drawing on experiences of people living with HIV”.

We have seen the devastating impact COVID-19 has had on our communities and been frustrated by the inadequate responses of our governments. And COVID-19, like the HIV epidemic before, has affected the marginalised communities most – from increased violence and human rights violations to loss of livelihoods and financial hardship. People living with HIV have struggled to access essential health care they need.

It doesn’t have to be like this. The HIV movement has decades of experience dealing with a global health epidemic. We have learnt many lessons over those years, developed skills and expertise that make us perfectly placed to, guide, advise and drive forward the response to COVID-19. In fact, in country after country, networks of people living with HIV have found innovative solutions and helped deliver health services to their communities through these challenging times.

This report looks at the three key pillars of UHC through the lens of our times. We draw on experiences of people living with HIV during the COVID-19 pandemic and offer learnings to  

  • Ensure equitable access
  • Provide quality health services
  • Minimise financial hardship

Our experiences to date of COVID-19 strengthen our resolve to find ways to achieve health for all, including marginalised people and people living with HIV.

This report is one of the outcomes of Beyond LIVING, a consultation and advocacy process led by GNP+, ICW and Y+ Global. We are guided by a diverse and creative Life Force – 11 people from across regions with different lived experiences, helping us to connect our global advocacy to the realities of countries and communities.

Also check out GNP+’s toolkit for activists – 10 things you can do to get involved and make a difference this UHC Day 2020.

Today, we commemorate World AIDS Day in support of people living with and affected by HIV, and to remember and celebrate those who lost their lives to AIDS. The global key population-led networks* – Global Action for Trans Equality (GATE); Global Network of People Living with HIV (GNP+); Global Network of Sex Work Projects (NSWP); Global Network of Young People Living with HIV (Y+ Network); Innovative Response Globally for Trans Women and HIV (IRGT); International Network of People Who Use Drugs (INPUD); International Community of Women Living with HIV (ICW); MPact Global Action for Gay Men’s Health and Rights (MPact) – issue this joint statement in solidarity with this year’s World AIDS Day theme: “Global solidarity, shared responsibility.”

This year, we commemorate World AIDS Day in the shadow of the COVID-19 pandemic, a global health crisis that has caused immense human misery and economic insecurity. Despite the devastation caused by the ongoing pandemic, we call on global policymakers and donors to not lose sight of their goal to end the HIV epidemic, which is now entering its fifth decade. The epidemic continues to disproportionately devastate our communities.

The HIV response is seriously off-track, particularly in curbing new HIV infections among key populations – gay and bisexual men, people who use drugs, sex workers, and transgender people – who have carried an inordinate burden since the beginning of the epidemic and who have been systematically denied rights, equity, and justice in the global HIV response.

Recent data indicates that, while there has been some progress in reducing new infections among some populations, 62% of new HIV transmissions in 2019 occurred among key populations and their sexual partners. Clearly, key populations continue to be disproportionately impacted by HIV. In comparison to the general population, the likelihood of acquiring HIV is greater for sex workers (x30), people who use drugs (x29), gay men (x26), and transgender people (x13).

Furthermore, the global target for HIV treatment will not be met by 2030 unless significant changes are made to the current HIV response. Only 59% of people living with HIV globally have a suppressed viral load. Almost a third of people living with HIV are not yet accessing antiretroviral therapy. To ensure that people living with HIV are able to live healthier and longer lives, and to prevent the further spread of HIV, it is critical that allpeople living with HIV be able to access high quality treatment services, to be retained in care, and to achieve an undetectable viral load.

Due to structural barriers such as criminalization, stigma, poverty, violence, and inadequately resourced programs, our communities struggle to access needs-focused and people-centered healthcare and HIV services. Discriminatory laws, policies, and practices further jeopardize the health outcomes and human rights of our communities. If these inequities are not addressed, the HIV epidemic will continue to cost people their lives and livelihoods.

The next year provides a critical opportunity for key populations to reclaim the HIV response. UNAIDS, the Global Fund, and PEPFAR are all updating their program and funding strategies in 2021. These and other multilateral and bilateral donors must do more to address the inequities that have devastated key population communities and resulted in unabating HIV epidemics worldwide among gay and bisexual men, people who use drugs, sex workers, and transgender people. We demand that global policymakers and donors urgently address these issues when developing their HIV strategies and funding priorities:

  • Address structural barriers: Decriminalization and addressing stigma and discrimination against key populations is integral to achieving an effective and sustainable HIV response. We urge donors to support community-led efforts to decriminalize sex work, drug use, and consensual same-sex relations, and to ban discrimination based on sexual orientation and gender identity. Donors should also actively work with communities and governments to end gender inequality.
  • Sharply increase funding targeted to key populations: Donor and national government investments in key population-tailored HIV prevention and treatment programs are grossly inadequate in proportion to the HIV disease burden of these communities. A recent study reported that a mere 2% of overall HIV funding is targeted at key population communities. This is unacceptable. Donors must earmark funding and develop funding streams and mechanisms specific to key populations-led organizations.
  • Put the last mile first: Key populations already play a central role in ensuring the affordability and accessibility of HIV drugs and services for all, including people living at the margins of societies. Donors should recognize this by meaningfully and respectfully engaging with key populations to ensure tailored, evidence-informed, and rights-based sexual health services. They should review existing strategies to engage with key populations at all levels of decision-making and find ways to broaden and deepen these partnerships. Finally, donors should refrain from imposing unduly burdensome policies and targets that can undermine the ability of key population-led organizations and networks to do their work.
  • Remember our past: We must not forget that HIV is about people. The principles of the Greater Involvement of People Living with HIV (GIPA) and “nothing for us without us” are critical elements of an effective and ethical HIV response. Donors, national governments, and civil society stakeholders should ensure that these principles are central to who key populations are and what we do, and to ensure our inclusion and visibility in programming and funding decisions.

The HIV2020 Online Conference: Reclaiming the Global Response, which was co-organized by some of the global key population-led networks, is hosting its final event today on World AIDS Day. This conference is a successful example of how, when, and why key population communities, armed with the necessary knowledge, funding, skills, and experience, can lead collective efforts to address the HIV epidemic.

HIV2020 closing plenery

Register Here

As we approach 2021, we are poised to redouble our efforts to break down barriers to HIV prevention and treatment access for our communities, to fight for our human rights, and to work towards reclaiming our rightful role in leading the HIV response to counter the risks, threats, and crises that directly affect us. We look forward to doing so in coalition and in solidarity with our partners across the world.

We at GNP+ celebrate the diverse and inspiring voices supporting the #NormalizingHIVChallenge.

On 21 September, South African Nurse Clinician, Angela Motsusi coined the hashtag on Facebook:

“…because with normalizing HIV comes less stigma, with less stigma & discrimination comes more acceptance of one’s HIV status and more adherence to ARVs, with adherence comes sustained viral suppression, and with this comes ZERO NEW HIV INFECTIONS.”

3

Doreen Moraa Moracha, 28 years old, a social influencer from Kenya took the challenge to Twitter:

“I took up the #NormalizingHIVChallenge because HIV is a manageable health condition, and it’s time people saw there is normal life even after an HIV positive diagnosis. As I always say I am greater than HIV and everyone living with HIV is greater than the virus.”

Within days, her challenge gained followers worldwide – students, actors, bar workers, doctors, priests – Jane Shepherd, 61 years old, a graphic designer from the UK is one of them:

“The campaign brought home to me that people born with HIV have lived with the virus as long as long-term survivors. #NormalizingHIVChallenge shows what a diverse global community we are and how the call to remove stigma can really rally and unify us. It felt powerful and supportive, like a big virtual hug.”

We know how widespread stigma still is and that not everyone can be open about their HIV status, so we will work tirelessly to #endHIVstigma and in the meantime hope the #NormalizingHIVChallenge continues to trend.

PRESS RELEASE

WASHINGTON, D.C./GENEVA, 29 September 2020—Despite decades of scientific advance in the HIV response, progress remains uneven, with some countries rapidly reducing AIDS-related deaths and new HIV infections and others seeing increasing epidemics. Laws and policies are driving a significant part of that divergence. 

Launched today, the HIV Policy Lab is a unique initiative to gather and monitor HIV-related laws and policies around the world. 

“Laws and policies are life or death issues when it comes to HIV. They can ensure access to the best that science has to offer and help people to realize their rights and live well, or they can be barriers to people’s well-being. Like anything that matters, we need to measure the policy environment and work to transform it as a key part of the AIDS response,” said Winnie Byanyima, UNAIDS Executive Director.

The HIV Policy Lab is a data visualization and comparison tool that tracks national policy across 33 different indicators in 194 countries around the world, giving a measure of the policy environment. The goal is to improve transparency, the ability to understand and use the information easily and the ability to compare countries, supporting governments to learn from their neighbours, civil society to increase accountability and researchers to study the impact of laws and policies on the HIV pandemic. 

According to Matthew Kavanagh, Director of the Global Health Policy & Politics Initiative at Georgetown University’s O’Neill Institute, “Policy is how governments take science to scale. If we want to improve how policy is used to improve health outcomes, it is essential to monitor and evaluate the policies that comprise it.”

“Reducing stigma and making care easier to access are fundamental for improving the lives of people living with HIV—and those are all consequences of policy choices. Tracking these choices is a key tool for improving them, and ensuring justice and equity for people living with HIV,” said Rico Gustav, Executive Director of the Global Network of People Living with HIV.

The HIV Policy Lab draws information from the National Commitments and Policy Instrument, legal documents, government reports and independent analyses to create data sets that can be compared across countries and across issues. The goal of the HIV Policy Lab is to help identify and address the gaps between evidence and policy and to build accountability for a more inclusive, effective, rights-based and science-based HIV policy response.

The HIV Policy Lab is a collaboration between Georgetown University and the O’Neill Institute for National and Global Health Law, UNAIDS, the Global Network of People Living with HIV and Talus Analytics.

About the Georgetown University O’Neill Institute for National and Global Health Law

The O’Neill Institute, housed at Georgetown University, was established to create innovative solutions to the most pressing national and international health concerns, with the essential vision that the law has been, and will remain, a fundamental tool for solving critical health problems. The Georgetown University Department of International Health is home to scholarship in public health, economics, political science, and medicine. Georgetown’s Global Health Initiative serves as a university-wide platform for developing concrete solutions to the health challenges facing families and communities throughout the world. Read more at oneillinstitute.org and connect with us on Twitter and Facebook.

About UNAIDS

The Joint United Nations Programme on HIV/AIDS (UNAIDS) leads and inspires the world to achieve its shared vision of zero new HIV infections, zero discrimination and zero AIDS-related deaths. UNAIDS unites the efforts of 11 UN organizations—UNHCR, UNICEF, WFP, UNDP, UNFPA, UNODC, UN Women, ILO, UNESCO, WHO and the World Bank—and works closely with global and national partners towards ending the AIDS epidemic by 2030 as part of the Sustainable Development Goals. Learn more at unaids.org and connect with us on FacebookTwitterInstagram and YouTube.

About GNP+

GNP+ is the global network for and by people living with HIV. GNP+ works to improve the quality of life of all people living with HIV. GNP+ advocates for, and supports fair and equal access to treatment, care and support services for people living with HIV around the world. Learn more at gnpplus.net and connect with GNP+ on FacebookTwitter and Instagram

PRESS RELEASE

As health systems the world over are buckling under the pressure of COVID-19, volunteers and activists from the HIV movement have stepped in to ensure that essential services continue. A survey by GNP+, ICW and Y+ Global has 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.  

The results of the survey, released today in our report Living with HIV in the time of COVID-19, show how governments are focusing their efforts on COVID-19 at the expense of other essential services and leaving marginalised people more vulnerable than ever. Services including HIV testing and prevention, sexual and reproductive health services and rights, harm reduction and psycho-social support have all been cut back leading to a real risk that the gains made over recent years to reduce new HIV infections and increase access to treatment will be erased. 

Networks of people living with HIV with four decades of experience of responding to a global pandemic are using their organising skills to respond to the new challenges of COVID-19. They are adapting their programmes to provide online counselling and using social media to provide accurate information to their communities. Staff and volunteers have sewn and donned masks and found ways to travel through lockdown to deliver ARVs, food packages and hygiene supplies directly to the homes of people in need. Many are working with law enforcers and policy makers to address gender-based violence, stigma and human rights violations. 

Now more than ever, the world needs the movement of people living with HIV and the creativity, expertise and passion that it brings. We call on governments, donors and UN agencies to give their political and financial support to networks and communities of people living with HIV to ensure the health and wellbeing of all people living with HIV in the time of COVID-19 and beyond.

Notes to editors

The report Living with HIV in the time of COVID-19 can be found here.

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.

For more information, please contact 

GNP+ is the Global Network of People Living with HIV (www.gnpplus.net)

ICW is the International Community of Women Living with HIV (www.wlhiv.org)

Y+ Global is the Global Network of Young People Living with HIV (www.yplusnetwork.org

The Global Criminalisation Scan website has been revamped and taken over by our expert and trusted partners at the HIV Justice Network. The new Global Criminalisation Database provides the latest data on HIV criminalisation laws globally”

global-hiv-criminalisation-database

Read Press Release below:

Today, we are delighted to announce a new version of the HIV Justice Network (HJN) website, www.hivjustice.net.

The centrepiece of the new website is the Global HIV Criminalisation Database, which comprises three separate but interrelated databases:

  • Laws and Analyses – a new portal providing updated information and analysis of HIV criminalisation laws previously collated by GNP+ as part of the Global Criminalisation Scan;
  • Cases – a regularly updated searchable global database of reported HIV criminalisation cases; and
  • Organisations – a new directory of organisations around the world actively working against HIV criminalisation.

Each section of the Database also features an interactive search tool and global map providing a visual account of where different kinds of laws are used, where various types of cases have been reported, and where organisations operate.

“We hope this new, improved version of our website will continue to be an essential source of up-to-date information for individuals and organisations advocating against HIV criminalisation around the world. We would especially like to acknowledge GNP+’s tremendous work developing and promoting their Global Criminalisation Scan, and take seriously our responsibility as custodians of global HIV criminalisation data moving forward” – Edwin J Bernard, HJN’s Executive Director.

Read the full press release at: https://www.hivjustice.net/news/global-hiv-criminalisation-database-launched-today/

 

Commentary By Rico Gustav, Executive Director of Global Network of People Living with HIV

“I don’t mind taking the ARVs. But you know that I’ll probably die from hunger or beaten up by silop (slang word for police) anyway, right?” These words by a fellow drug user that I was trying to convince to start ARVs years ago when I was a peer educator in Indonesia echoed for years in me, because of the broken spirit that I saw that day. But these days those words are synthesized in me for a very different reason: because he was entirely right.

You can give someone ARV treatment their entire life, but what will it do if they die from being criminalized? Of domestic violence? Of starvation? Of not being able to protect themselves from those who are supposed to protect and serve our own society?

COVID-19 is just the latest reminder of the fact that health is not only about health. It is also about social justice for those who cannot even wash their hands with clean water because it is not available to them. It is about economic justice for the sex workers that cannot afford to isolate themselves as their work security is not protected, but rather persecuted. It is about political choices for the political parties that wish to privatize the health system, rather than investing in affordable health systems that are available for the public.

When the world moved from the Millennium Development Goals to the Sustainable Development Goals, one primary passion behind it was this understanding that development sectors are interconnected. You cannot address one dimension of society, without developing others.

We can be sure that over the next two to five years, pandemic preparedness and health security will be high on the global development agenda. Society cannot afford to get hit like this again, not with our current economic, social, political systems. We are ‘lucky’ that COVID-19’s highest estimated mortality rate is about 2%. With the 7.7 billion people occupying the earth and the natural progression of globalization, we can almost be 100% sure something else will be coming, something that may be far more fatal than COVID-19.

COVID-19 will not be the last one, it also was not the first one. We have had many warnings. Not only MERS, SARS or Ebola. More than 32  million people have died of AIDS-related illnesses[1], it was ignored for years and some people continue to ignore it and pretend it’s not their problem. For many years, tuberculosis has been the leading cause of death, yet the current global financing for TB response is US$15 billion[2] from being effective to combat it.

Unlike HIV and TB, COVID-19 made everyone feel vulnerable, instead of ignoring it as a disease that attacks certain groups that are marginalized. But COVID-19 should be a reminder that we may be your security guards, your office cleaners, your drivers, construction workers, sex workers, shop keepers, the gay guys you mocked on the street and the women you catcalled shamelessly – but our health is your health. The seconds we spend not being able to access services we need, are the seconds you spend putting your own well-being at risk.

People living with HIV have been advocating for strengthened and modernized health systems for many years. But more accurately, we have been advocating not only for strong and resilient health systems, we have been advocating for something far more important: systems for health. Systems for health is a system that recognizes the centrality of community-led response and person-centered care. Systems for health is an approach that recognizes that health does not exist in isolation and recognizes that the success of health goals fully rely on the success of our society to address overall inequality.  Systems for health put the last mile first, by prioritizing the most marginalised and most vulnerable.

On this World Health Day, let us remember that social and economic classes may divide us, but the absolute fact is that humans live as a vulnerable herd, and we can die as one if we do not start recognizing the interconnectedness of both dimensions of our lives, and interconnections between us as individuals.

With solidarity in this difficult time,

Rico Gustav

[1] https://www.who.int/gho/hiv/en/

[2] http://www.stoptb.org/assets/documents/about/cb/meetings/32/32-04%20Global%20TB%20Financing/32-4.4%20Global%20TB%20Financing%20-%20Bridging%20the%20financial%20gaps%20in%20the%20TB%20response_Presentation.pdf

The Global Network of People Living with HIV (GNP+), the International Community of Women Living with HIV (ICW) and the Global Network of Young People Living with HIV (Y+) congratulate Rico Gustav, GNP+ Executive Director and member of the Communities Delegation to the Global Fund Board, on his appointment as Chair of the Strategy Committee of the Board of the Global Fund for 2020 to 2022.

“This is a pivotal moment for all people living with HIV, as we will demonstrate direct leadership in the oversight and development of the Global Fund strategy,” said Olena Stryzhak, Interim Chair of ICW.

The Strategy Committee is one of the Global Fund’s three committees that has delegated authority from the Board to perform decision-making, advisory and oversight in their specific areas. The Strategy Committee provides oversight of the strategic direction of the Global Fund and to ensure the optimal impact and performance of its investments in health. This appointment as the Strategy Committee Chair is especially important at this time, given that the new Global Fund Strategy for 2023 – 2028 will be developed under the stewardship of the Strategy Committee.

“We talk about people centred responses, about community leadership, about strengthening health systems- and here is a leader who understands these issues and can help direct discussions and decisions with partners,” said Igor Kuchin, Chair of the Y+ Board.

“Representing the needs and concerns of people living with HIV, and people affected by TB and malaria, and our broader community, will be central to the work of the Strategy Committee. I am looking forward to ensure that we put the last mile first and improve the quality of life for all,” said Rico Gustav.

Gustav’s term will officially begin in May this year.

This International Women’s day, sister organisations the Global Network of People living HIV (GNP+), the International Community of Women living with HIV and the Global Network of Young People living with HIV (Y+), call for justice for women living with HIV whose lives have been devastated by this horrific violation of their human rights and an end to all violations of women’s autonomy and bodily integrity.

The forced and coerced sterilization of women living with HIV has been documented in over 31 countries around the world, including 9 countries in Eastern and Southern Africa. Women and girls who face discrimination, including on grounds of HIV status, have been disproportionally targeted by the practice. “Women of reproductive age around the world, particularly those of us living with HIV, continue to experience and targeted by outdated and harmful attitudes that manifest in violations of our rights. We look to the women who came before us as inspiration to claim our sexual and reproductive health and rights!” said Annah Sango, Y+ leader.

Forced or coerced sterilisation of women living with HIV, not only violates human rights but it also makes no sense as a public health rationale, and ignores well established elimination of vertical transmission of HIV practices that have existed for two decades. The practice violates established international human rights law, including the rights to bodily integrity, full, free and informed consent and the right of women living with HIV to marry, to have a family and to decide freely on the number and spacing of their children as enshrined in the Convention on the Elimination of all forms of Discrimination against Women (CEDAW).[1] The sterilisation of women living with HIV violates governmental obligations to respect, protect and fulfil the right to the highest attainable standard of physical and mental health and represents a form of violence against women and has been recognised as torture— violating women’s rights to be free from cruel, inhumane, or degrading treatment or punishment.Forced and coerced sterilisation is under no circumstances a legitimate method of prevention of vertical transmission and sterilisation is never an emergency procedure that justifies suspension of an individual’s rights to informed consent.

The South African Commission for Gender Equality (CGE) recently confirmed findings  that  women living with HIV in two provinces were sterilized without their informed consent in public hospitals on the basis of discrimination related to their gender and HIV status, as they have long claimed was the case. ICW, in partnership with Her Rights Initiative, lodged the complaint in 2015 on behalf of 48 women living with HIV who suffered forced or coerced sterilization in state hospitals.The CGE’s investigation focused on 15 hospitals and included meetings with the South African National Department of Health and onsite inspections.

“Women living with HIV who brought this complaint have shown tremendous bravery in standing up to the pervasive stigma and discrimination they experience in healthcare settings and claiming their rights to bodily autonomy and to choose whether and when to have a family”, said Sharon Mashamba, Regional Director, ICW Southern Africa.

ICW’s documentation detailed the harrowing experiences of women, who endured humiliating and degrading treatment from healthcare workers. Women were asked to sign consent forms while in labour and some while they were being prepared for Cesarean section surgery. In most cases signing the consent forms was a pre-condition to receiving medical treatment. The women reported that they were misled by doctors who told them they should not have children because they were HIV positive. The women described being powerless due to being in labour and the unequal power dynamics characteristic of healthcare settings.

“Women living with HIV continue to be subjected to egregious forms of reproductive oppression in healthcare settings. Until these practices are ended everywhere and until women who have experienced these violations have justice, we must keep fighting” said Sophie Brion, Human Rights Lawyer.

ICW, GNP+ and Y+ call on all governments to explicitly prohibit sterilization without free, full, and informed consent and in cases of violation to ensure justice and remedies including reparations to survivors and their families and swift action to hold accountable medical providers who forcibly sterilise women living with HIV.

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This statement is based on the Press Statement by the International Community of Women Living with HIV which can be found at:  https://tinyurl.com/qt3wgqa

[1]UN Convention on the Elimination of all forms of Discrimination against Women (CEDAW), General Recommendation 24, para.22, ; CEDAW, General Recommendation 19: Violence against Women, UN GAOR, 1992, UN Doc. A/47/38, at para. 22.

 Point-of-care diagnostic machines are a critical breakthrough in HIV early infant diagnosis. In the countries where they are being used, they are already saving the lives of infants living with HIV. The technology has been shown to work, we know it is cost-effective, now is the time to scale up – all HIV-exposed infants should have access to point-of-care diagnosis. 

The Global Fund (GF) proposal development process and the USA President’s Emergency Plan for AIDS Relief (PEPFAR) country operational plan (COP) processes are taking place right now – they are important opportunities to – all HIV-exposed infants should have access to point-of-care diagnosis (POC EID). 

 Why is early diagnosis so important? 

When infants living with HIV are untreated, the disease progresses quickly. Without treatment, up to 50% of children living with HIV die before their second birthday. 1 Untreated infants living with HIV are particularly vulnerable in the first three months of their life. 2 To have the best chance of survival they need to be tested and started on treatment. So, the World Health Organisation (WHO) recommends EID, which means testing infants born to mothers living with HIV within the first 6 weeks of life.

GNP+ and partners developed a brief on the importance of point-of-care early infant diagnosis for advocates participating in the PEPFAR COP and Global Fund country proposal processes. You can find it here.

 

Measuring HIV quality of life (sometimes referred to as the “4th 90”) is becoming a critical aspect of the continuum of care. Due to the increasing importance of HIV quality of life, GNP+ proudly announces the formation of the HIV Quality of Live Partnership made up of GNP+, Frontline AIDS, the International Planned Parenthood Federation (IPPF), NCD Alliance, STOPAIDS, UNAIDS, the World Health Organization (WHO) and the Global Network of Young People Living with HIV (Y+).

This partnership aims to develop a framework for a comprehensive model of measuring quality of life of people living with HIV, including measuring the impact of community-led interventions in order to make a strong investment case for these services. We are proud to announce this on Universal Health Coverage (UHC) Day as we need to move beyond only measuring biomedical interventions and mortality indicators.

Quality of life is an essential issue for people living with HIV. It affects our ability to enter and stay within the continuum of care and, ultimately, become and remain virally suppressed. However, quality of life is person-dependent and means different things to different people. Quality of life comprises three core components: prevention, care, support and treatment for HIV; prevention, care support and treatment for non-HIV-specific physical and mental health issues that lead to people living with multiple chronic conditions including disability; and, well-being and wider social, cultural and economic rights. Not dying does not mean that people living with HIV are living  to their fullest potential. As people living with HIV, access to antiretrovirals, important as it is to our lives and well-being, is not the only thing we need in order to live better lives with the virus. We often do not have access to education, to jobs, to nutritious food, or to platforms where we can exercise our democratic rights. These, and all other dimensions of our life, influence the quality of life we live with HIV.

While happiness is a state of mind, quality of life is measurable and should be framing the way that we do our work on health. We cannot limit the UHC conversations to those about the economy, about health systems, or about health insurance. Health is a right. Because it is a right, we need to start talking not only about health systems, but systems for health. Systems that put the last mile firstand that meet the needs of the most marginalised must be ready, both technically and politically, to meet the needs of people living with HIV.

We are committed to ensuring that the ‘universal’ in UHC means every human being. We are convinced that the only way to do this is to make sure we reach those who are furthest behind, those who are most ignored and criminalized for their basic human identities by putting the last mile first.

As UHC marks the beginning of the evolution of health systems, on this UHC day, we would like to bring to the UHC deliberations the hard-learnt lessons from the global HIV movement, including the importance of community-led interventions and responses to improve quality of life. One of the most critical lessons coming out of the global HIV movement is that we are “people” first, and just like other human beings, the spectrum of needs of people living with HIV is wide and complex. Focusing solely on a single dimension of our lives, such as only using biomedical markers (or indicators), does not work. Addressing these needs – both health and non-health related – in a comprehensive, person-centred way, is critical to supporting how we live with HIV and, just as importantly, the quality  of our lives.

Visit our webinar for more information on measuring quality of life for people living with HIV.