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.
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.
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.”
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.
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.
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 Facebook, Twitter, Instagram and YouTube.
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 Facebook, Twitter and Instagram.
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.
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”
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.
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, 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 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.
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). 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.
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
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.
The Communities Delegation (CD) to the Unitaid Board, representing people living with the diseases, actively participated in the Executive Board of Unitaid at its semi-annual meeting held in Geneva, on 20 and 21 November 2019. The Communities Delegation was represented by the Board Member, Liaison Officer and four delegation members. This brief report summarises the key issues discussed at the Board meeting, the Communities Delegation’s positions, and the resulting outcomes and decisions.
Executive Director steps down
Mr Lelio Marmora has announced to the Unitaid Executive Board that after five years of service, he has decided to step down as Executive Director of Unitaid within the next few months. The Board has thanked Mr Marmora for his leadership and recognized his pivotal role in transforming Unitaid into a leading global health organization. Deputy Executive Director Dr. Philippe Duneton will assume the role of acting Executive Director as of March 2020 until a successor is appointed. Dr. Duneton is a seasoned member of the Unitaid executive team, and the Board has expressed complete confidence in his ability to lead the Unitaid secretariat at this time.
Agility mechanism and Chagas disease
While Unitaid has managed to support significant innovations in HIV, TB and malaria, the midterm review of the 2017-2021 strategy also showed that the operating model may not be nimble enough to catch smaller innovations with potential at an early stage in their gestation. Such investments also tend to be riskier by nature and may not have the same maturity in terms of path to scale-up. In that context, the Secretariat has developed a framework for an “Agility mechanism” that is intended to complement the operating model, and that can empower Unitaid to support innovation to the full while protecting the integrity of its mandate.
Following the September Board Seminar and the recent PSC meeting in October, the Board approved the framework to pilot an ‘agility mechanism’ which will allow Unitaid to invest in new opportunities of up to $20 million in 2020, approximately 10% of its annual funding pipeline. This agility mechanism will stay within the current mandate to support innovations in HIV/co-infections, TB, malaria, RMNCAH (reproductive, maternal, newborn, child and adolescent health) and Antimicrobial Resistance (AMR) and will be piloted during one year, with a view to informing the next strategy (2021-2016).
Scalability of Unitaid’s investments is key in areas that are especially dependent on domestic financing, such as RMNCAH. A timely example, relevant for maternal and child health, has been identified: new diagnostics and treatments for Chagas disease to contribute to the elimination of congenital disease, with technical breakthroughs to stimulate a country-led response. A call for proposals for Chagas disease was launched this week.
The agility mechanism will differ from the current operating model in two ways. First, the Executive Board delegates the administration of the agility mechanism to the Unitaid Executive Director, with the Secretariat determining which projects to source and select and taking responsibility for supporting projects and assessing progress. Second, the Executive Board does not seek to use the Board endorsements that are required in the current operating model, but instead requests that the Secretariat report annually on any projects supported by the agility mechanism. The Secretariat will, however, seek endorsement by the Board for projects over $5 million.
The Communities Delegation broadly agreed with the new mechanism and governance model in order to quickly respond to new opportunities and emphasised the need to include communities as key players in order to turn Unitaid’s investments into long-lasting in-country adoption and policy changes.
Expanded Area for Intervention (AfI): malaria chemoprevention, focus on intermittent preventive treatment in infants (ITPi)
The Board confirmed the expansion of the current AfI on malaria which already includes Seasonal Malaria Chemoprevention and chemotherapy in pregnant women to the renamed AfI “Malaria chemoprevention” by including the opportunities presented by Intermittent Preventive Treatment in infants (IPTi), for children under 12 months.
IPTi is considered a high-impact and cost-effective intervention for preventing malaria-related mortality in infants. Unitaid will look at tackling key barriers to scale up, such as determining the right dosing and formulations for infants, as well as identifying complementary opportunities for delivery by including IPTi in existing immunization programmes and weighing visits.
The Communities Delegation supported the expanded AfI and underlined the importance of community health promotion for the uptake and sustainability of these preventive interventions. “We strongly encourage that any IPTi project has a framework and clear budget for inclusive community engagement and that Ministries of Health will be involved so that the outcomes of these interventions will be integrated into the National Health Systems,” said Communities Board member, Kenly Sikwese. “Specifically, we want to ensure that communities can play a critical role in the advocacy for the long-term sustainability of the project.”
The delegation also advocated for a more comprehensive approach to reduce infant mortality from malaria. Severe anaemia continues to be a significant challenge in mortality for children under five years, hence a holistic approach of the social determinants, including nutrition, should be part of the Call for Proposals to be launched in the coming months.
The Executive Board appointed a new Chair and Vice-Chair for the Policy and Strategy Committee (PSC) and welcomed Sarah Boulton on behalf of the UK and Precious Matsoso on behalf of African Countries respectively. The Communities Delegation received Observer status on the PSC and became a full member of the Finance and Accountability Committee (FAC). The Board appointed Jamie Morris (Gates Foundation) on behalf of the Foundations and Leonard Abrantes on behalf of Brazil, as Chair and Vice-Chair of the FAC. Communities Board member, Kenly Sikwese, will continue serving as a member on the increasingly important Governance Working Group to overlook the development of a Code of Conduct for the organization.
The next Board meeting will take place in Geneva on 17-18 June 2020.
The Communities Delegation to the Unitaid Board represents people living with and affected by HIV, TB and Malaria and those co-infected with HIV and HCV. The Communities Delegation has the goal of representing the views, voices, needs and interests of Communities living with the Diseases at Unitaid Board and Committee level. It aims to be transparent, accountable and to prepare communities to engage in Unitaid’s work areas that directly affect those living with the diseases at grassroots and country level, especially in the global south. The Communities Delegation to the Unitaid Board is hosted by the Cape Town office of the Global Network for and by People Living with HIV (GNP+). For more information, please contact Wim Vandevelde, Liaison Officer, Communities Delegation, email@example.com
This World AIDS Day, themed Communities make the difference, the Global Network of People Living with HIV (GNP+) highlights the central role that individuals and networks of people living with HIV play in the HIV response.
People living with HIV, as well as key population networks, have been at the center of holding decision-makers to account, providing services and making programmatic, policy and funding decisions that affect our lives. This World AIDS Day we highlight the Greater Involvement of People Living HIV (GIPA) principle in leading in the HIV response.
A key example of GIPA and people living with HIV at the center is the PLHIV Stigma Index, where people living with HIV are both the interviewers and the respondents. People living with HIV lead on all the data collection, analysis, dissemination of data and using the data for lobbying, policy reforms, health services delivery improvements, knowledge generation and creation of comprehensive knowledge about the human rights of people living with HIV.
The second Uganda PLHIV Stigma Index was launched this week by the National Forum of People living with HIV/AIDS Networks in Uganda (NAFOPHANU) with support from the Embassy of Ireland through the Prevention of HIV & AIDS in Communities of Karamoja (PACK) Project. The survey included 1398 people living with HIV in 9 regions of Uganda covering 21 districts.
The 2019 Uganda PLHIV Stigma Index highlighted issues of disclosure, experiences of external forms HIV stigma, such as exclusion from social gatherings, physical and verbal harassment or being gossiped about, and experiences of self-stigma.
The PLHIV Stigma Index tool was developed by GNP+, UNAIDS, the International Community of Women Living with HIV and International Planned Parenthood Federation (IPPF) in 2008 and updated in 2017. In Uganda, the first national PLHIV Stigma Index survey was conducted in 2013, during the early days of the national antiretroviral treatment program. The updated PLHIV Stigma Index – the PLHIV Stigma Index 2.0 – was tested in Cameroon, Senegal and Uganda in 2017 and has been available from GNP+ since the end of 2017.
“The Stigma Index puts us in the centre and allow us to point out what has been working and what must be improve. With the fast-changing global health landscape, it is imperative to have a way to voice out our needs and priority beyond bio-medical interventions,” says Omar Syarif, the GNP+ Programmes Manager leading on this work.
“People Living with HIV are the experts in combatting stigma and discrimination, facing it every day in their lives. The Stigma Index is a living advocacy tool that is used as a foundation for further advocacy and human rights defense work towards an equal and just world for all PLHIV,” says Alexandra Volgina, GNP+ Programmes Manager.
This is one of thousands of examples of people living with HIV at the center of the HIV response. GNP+ calls for investment in networks of people living with HIV and in the critical work networks do in mobilising their constituents to speak up about the issues that affect them and to develop and implement solutions together. GNP+ calls for the inclusion of people living with HIV in decision-making spaces as we work collectively to end AIDS and to ensure good quality of life for people living with HIV and the communities around us.
On 19 November 2019, Human Rights Watch released the statement ‘UAE: Groups Press to Aid Prisoners With HIV’. On November 4, Human Rights Watch released research that revealed that Emirati prison authorities are denying non-national prisoners living with HIV in some United Arab Emirates (UAE) prisons regular and uninterrupted access to lifesaving antiretroviral treatment. It was also found that prison authorities in al-Awir central prison in Dubai and al-Wathba central prison in Abu Dhabi have segregated detainees living with HIV from other prisoners and systematically discriminated against them.
The Global Network of People Living with HIV (GNP+) strongly supports the emphasis on the right of access to treatment for detainees, outlined in a letter from human rights and public health organizations and networks working on HIV and TB, to Sheikh Mohammad bin Zayed Al Nahyan, the Abu Dhabi crown prince.
In addition, GNP+ calls for the protection of the rights of all people living with HIV in the UAE. People living with HIV (PLHIV) are not allowed to enter or stay in the UAE. Those found to be living HIV are immediately deported. The UAE does not allow the importation of antiretrovirals for personal use and do not provide HIV treatment and care. Health exams, including HIV tests, are required in mandatory health testing when applying for visas and permits. These are clear violations of human rights, not only for those living with HIV, but also those not living HIV.
The Global Network of People Living with HIV call on the UAE authorities to work with the communities of PLHIV to review these draconian policies, to ensure that all people are able to access appropriate treatment and care for HIV.
By Nicholas Niwagaba, Uganda Network of Young People Living with HIV & AIDS (UNYPA) Executive Director
In Uganda, young people in all their diversity are actively involved and leading in policy decision-making. The Ugandan Network of Young People Living with HIV (UNYPA), where I am Executive Director, has been journeying with GNP+ through the Bridging the Gaps (BtG) programme and invested in equipping young people with advocacy skills to effectively participate in key policy meetings and processes in Uganda, aimed at ensuring the specific needs of young people living with HIV are recognised and addressed.
Young people and adolescents (10 to 24 year olds), especially young women and young people among key populations (sex workers, people who use drugs, transgender people and men who have sex with men), continue to be disproportionately affected by HIV. Currently, over 30% of all new HIV infections globally are estimated to occur among young people aged 15 to 25 years. This is twice as high among adolescent girls and young women (AGYW) and among young people from key populations. This points to the need to increase the meaningful engagement and involvement of young people in defining and designing programs aimed at improving their health.
This year has been an active one for UNYPA youth advocates. With the support of all our partners, including BtG, we have:
engaged in the review of the new National Guidelines for Psychosocial Care and Support. These guidelines prioritise young people to ensure that they are supported in disclosure, adherence to treatment, proper mental health management, viral load suppression, and access to Dolutegravir (DTG) regimen for women and girls living with HIV of reproductive age.
pushed for the roll-out of Differentiated Service Delivery (DSD) with a new approach to improve youth friendliness of the services through the Youth & Adolescent Peer (YAPS) model, which is currently implemented under a pilot in 10 districts to be scaled up to 45 districts in Uganda by the Ministry of Health, in partnership with health facilities and our young peers.
participated in the PEPFAR COP19 regional planning meeting to discuss the country strategy, priorities and budget for the following year as well as set targets on implementing country operation plans (COPs) to improve the response to HIV. At the meeting, the youth representatives pushed for specific interventions and budget lines for AGYW. This included an increase in allocation for national HIV prevention programming and including the Youth Advisory Panel (YAP) model that secured funding for scaling up the pilot to an additional 30 districts in Uganda to improve ART enrolment, retention and viral load suppression among young people.
UNYPA have mobilised support from partners domestically and internationally along with GNP+ and other partners to strengthen our network and programming to service young people living with HIV, and in particular to push for quality services. The Bridging the Gaps support from GNP+ has contributed to equipping young people with the effective advocacy skills so we can speak up and speak out on issues that matter to us.
Young people are actively involved and leading the advocacy in Uganda and creating impact for young people.
LYON, FRANCE – The Global Network of People Living with HIV (GNP+) congratulates the Global Fund for raising $13.92 billion at the 6th Replenishment today, with a commitment for a further $100 million to be raised before the end of the year. This is the largest amount of funding raised for the Global Fund in its history.
But is it time to celebrate? We do not think so.
The 6th Replenishment target calculation of US$14 billion was based on the assumption that there will be 48% increase in domestic resources available in Global Fund-eligible countries during the grant cycle. Beyond the seemingly hard-to-achieve amount of a $15 billion increase in domestic resource mobilisation, there are also questions on whether countries will invest their resources on the right health interventions that are supported by evidence?
The Global Fund is instrumental in funding services and programmes that are led by communities and key populations, including key populations who are living with HIV. However, many implementing country governments are still unwilling to fund programmes related to key populations. The Global Fund’s investments itself are not enough to sustain these critical life saving programmes and unfortunately, there is no silver bullet for sustainable resources available, except for both donors and implementing governments to step up and face their own political fear in investing for key population programmes and services. Stepping up the fight is not only about increasing resources available, but putting those resources into interventions that create sustainable impact: community-led interventions that promote and protect the rights to health and improve quality of life.
We also encourage the Global Fund to be more ambitious in investing in evidence-based interventions that can accelerate its progress to achieve its mission. Political trends such as Universal Health Coverage and ambition towards health for all should be considered as opportunities to improve the quality of response to the three diseases and to further scale up existing interventions.
“The $14 billion target was the minimum needed for the Global Fund to reach its own strategy goals, but not to reach the Global Plans for HIV, TB and Malaria. We know that we need closer to $18 billion for the HIV, TB and Malaria responses. Although what we have may not be enough, we need to use the funds committed today to put the Last Mile First and prioritise the most marginalised groups, including people living with HIV and key populations such as sex workers, people who use drugs, transgender people and men who have sex with men,” said Rico Gustav, Executive Director of GNP+.
This 6th Replenishment takes place during challenging times where geopolitical power struggle seems to be moving away from the spirit of multilateralism and as conservatism is dominating the political world stage, and polarising domestic politics both within donor and implementing countries. At the same time, the gap of living conditions in some parts of the world is widening due to slow progress towards achieving the Sustainable Development Goals. We believe that fully funding the Global Fund, a financing mechanism focusing on the three diseases that helps to redistribute resources among and within nations, will catalyse the progress needed to achieve health for all. By making sure that heavy disease burdens are properly addressed through adequate investment of resources, systems for health will have space and opportunities to truly improve quality of life for people living with HIV and key populations.
We will only celebrate once we have gone the distance needed for all people living with HIV and key populations to have good quality of life, starting with the last mile first.
The Global Network of People Living with HIV (GNP+) congratulates member states of the United Nations for the commitment made yesterday through the adoption of the Political Declaration on Universal Health Coverage (UHC) made in New York during the High Level Meeting, but calls for an accountability mechanism to hold all actors to account in achieving UHC, to be established.
GNP+ believes that a strong accountability mechanism is the missing piece from the current Political Declaration. Without an accountability mechanism, real progress towards Health For All will remain limited and undescribable. We urge member states and United Nations agencies to expand the use of World Health Organization annual reporting system to capture progress beyond the two SDG indicators currently monitored for UHC. Commitments without clear global, regional and national targets will result in minimum progress and maximum self-congratulatory celebrations.
“Global commitments enshrined in a Political Declaration will only have meaning if translated into policies, actions, and financing at the country level. Clear, coherent, and communities-and civil society- inclusive accountability mechanisms that build upon national, regional, and global processes are needed to move the Political Declaration on UHC from mere rhetoric to reality.” said Rico Gustav, Executive Director of GNP+. “The Political Declaration should be accompanied by an accountability framework that establishes targets through which all stakeholders – including key and affected communities – can hold countries to account. These should include specific indicators to assess the extent to which Universal Health Coverage is ‘putting the last mile first’ and meeting the needs of the poorest and most marginalised.”
True universal health coverage, that leaves no one behind, has to start with placing the needs of the poorest and most marginalised members of society at the start and center. While acknowledging that there will always be a debate on how to define which groups are most marginalized, we insist that this debate does not only highlight those who are challenged by geographical or economic barriers, but also the key populations that are highly stigmatized and marginalized. These key populations are often criminalized, even when doing so means member states are violating their human rights, and endangering their access to health services and programs they need to protect themselves and improve their health. Continuing to criminalize HIV transmissions, men who have sex with men, sex workers, drug users and transgender communities will mean leaving these communities behind, as past decades have proven.
Universal Health Coverage requires wide-ranging and well-run systems for health. These go beyond government-run and facility-based health systems to incorporate community-led and based systems for the delivery, management and monitoring of health education, prevention, support and treatment services. Community responses complement other sectors. They bring unique added value– notably their reach to, and acceptability among, those most marginalised and vulnerable who have specific needs that are unmet by others. Community responses are dynamic– able to respond to immediate challenges and actual needs, and to make the best use of available resources. To be effective, UHC strategies must be based on diverse and multi-sectoral systems for health – which integrate and resource community responses as an essential component, rather than an ‘optional extra’.
The Global Network of People Living with HIV (GNP+) and the International Community of Women Living with HIV (ICW) proudly announce our joint decision to stand behind communities and join the co-organizers of HIV 2020 in Mexico City.
HIV 2020 provides a safe alternative for individuals who cannot or will not enter the United States of America (USA) or who cannot afford to attend AIDS 2020.
Legal travel restrictions act as a barrier for sex workers, people who use drugs and people who have been formerly arrested to enter the country. More than half of GNP+ staff may not be able to obtain a USA visa due to travel restrictions, including the Executive Director. ICW has been made aware of similar concerns from membership. While waivers may be issued, it is unclear what the effect is of disclosing to the USA government that we are part of key populations, as required in the USA visa application. Rejection of USA visa applications may also permanently influence an individual’s ability to apply for a visa to other countries.
Olena Stryzhak, Acting Global Chair of ICW, declares, “We stand beside GNP+ in supporting HIV 2020 as an alternative for those who cannot attend the AIDS conference. For many people living with HIV and representatives of key populations, these gatherings are either an opportunity of a lifetime or a serious impetus for changes for the benefit of ourselves and society. Only a strong community can improve the world around us.”
United, we have been engaging in discussions with a broad range of partners globally, including key population and some people living with HIV networks and groups, and have been monitoring the socio-political situation in the USA. Human rights conditions have significantly worsened in the last few years.
Current USA travel restrictions pose a significant barrier to GNP+ and ICW being able to freely consult with our constituency in all our diversity, and especially those most vulnerable and at risk of HIV.
As global advocacy organisations, we always encourage communities living with HIV and key populations to join marches, protests and demonstrations that are aligned with their issues and agendas. However, doing so with levels of police brutality in the USA, particularly towards people of colour, raises concerns for us about the safety of participants.
It is important to note that GNP+ and ICW support the individual decisions of those who wish, are able and can afford to attend the AIDS 2020 conference in San Francisco and Oakland. We also acknowledge and support communities and groups living with HIV in the USA who are working towards ensuring that AIDS 2020 pushes their domestic advocacy agenda.
Rico Gustav, Executive Director of GNP+, states: “Join us at HIV2020 where communities are reclaiming the global HIV response. We need to reclaim the response by acting in solidarity with people living with HIV, advocates, community-based organizations, healthcare and services providers, researchers, public health officials, and funders in order to ensure that the global HIV response becomes more than just numbers or simply rhetoric.”
The HIV 2020 conference is an opportunity to redefine and reinvigorate a lethargic HIV response by ensuring that there is strong political and civil society leadership and adequate resources to address the social economic and structural barriers that continue to deny key populations access to much needed prevention, treatment, care and support services. Only together, with our different expertise, guided by lived experience and committed to doing things differently can we meaningfully respond and ensure that we leave no-one behind”.
Registration for HIV2020 in Mexico City will start on 23 September 2019. Please visit www.hiv2020.org for more information.
The Global Network of People Living with HIV (GNP+) congratulates Winnie Byayima on her appointment as the new UNAIDS Executive Director. We wish her all the best in this critical role as sheleads UNAIDS in global, regional and national HIV responses. We are particularly pleased that a feminist woman has been appointed to this role for the first time.
As described in a joint letter in the The Lancet on July 10, 2019, we call on Ms Byanyima to focus on four key areas in order to get the global AIDS response back on track:
Closing the gap in political will and funding and ensuring that the world again steps up commitment from governments and donors.
Partner with people living with and affected by HIV, key populations, and young people to deliver tailor-made technical, social, and political strategies for these communities.
Lead transformations in legal and policy environments despite opposition—removing harmful laws, including those that criminalise some of the most affected populations, and accelerating uptake of evidence-based policy.
Lead the cultural and institutional changes needed at UNAIDS to address abuse of power and establish accountable leadership.
Only 21.6 million of the 36.9 million people living with HIV globally are accessing treatment. That is less than two-thirds of people who need treatment for their own health and to prevent further transmission of HIV. Reaching the remaining 15.8 million will not be achieved by doing more of the same. The 41% of people living with HIV who do not have access to life-saving treatment now are the ones harder to reach – key populations living with HIV, the most disadvantaged rural and urban populations, the most disempowered financially and the most vulnerable because of gender inequalities.
“Winnie Byanyima faces an incredibly difficult task in leading UNAIDS at a time when the HIV response is in a crisis. She must place the needs of the poorest and most marginalised members of society at the start and centre, and put the last mile first. Today’s epidemic is driven by marginalisation, stigma, and discrimination, resulting in poor health care, insufficient access to treatment, and substantial power imbalances. Full decriminalisation of key populations is non-negotiableto ensure that we have the means to protect ourselves and improve the quality of our lives as more than half of new HIV infections are among key populations. We are ready to work with her to take bold action and find solutions,” said Rico Gustav, Executive Director of the GNP+.
We urge Winnie Byantima, in her role as incoming Executive Director, to engage with global key population networks at every opportunity to further discuss full decriminalisation of all key populations, across regions and in-country. At the country level, we call on the new Executive Director to convene and coordinate a robust HIV response, speak up for and support the meaningful engagement of communities living with and affected by HIV (including those from key populations), support the development of inclusive and integrated national health strategies, advocate for bold national AIDS plans that mobilises all sectors and addresses structural barriers and ensure adequate investment in priority areas based on what works.
We are looking forward to working with her in this role as we work collectively to ensure the rights of all people living with HIV and key populations.
Georgina’s work has always been grounded in a belief that people living with HIV have a relevant and important role in defining and shaping the HIV response; and she brings with her extensive programming and implementation experience which has seen her manage diverse community-led HIV programmes, providing oversight and technical leadership to large-scale multi-country programmes focused on HIV prevention, treatment, sexual and reproductive health and rights, and stigma and discrimination.
Georgina was the programme manager at GNP+ from 2008 – 2013, where she supported networks of people living with HIV to build their research and advocacy skills to access prevention and treatment information and services. Returning to GNP+ is like coming home for Georgina.
“I am excited about the opportunity to work with GNP+ again to support work on treatment access, to address stigma and promote quality of life. I would like to help build and strengthen strong partnerships and solidarity with national networks of people living with HIV. I am particularly excited to work with young leaders living with HIV as we generate and push forward new ideas,” says Georgina.
Georgina also serves in a number of HIV leadership roles, including as Chair of the Access Advisory Committee for the International Partnership for Microbicides, Chair of the Biomedical HIV Prevention Forum for ICASA and Chair of the ViiV Positive Action for Women and Girls Fund.
“Georgina joins GNP+ at a transformational time in the global HIV, health and development sectors, with political and financial challenges affecting the strength and sustainability of networks of people living with HIV and key populations around the world,” says Rico Gustav, Executive Director of GNP+.
“We are committed as GNP+ to ensuring that people living with HIV are meaningful engaged in relevant national, regional and global policy discussions. We need to be innovative and strategic in how and where we engage, and having Georgina join the global team will help us achieve that more effectively.”
Georgina will take up her position in October 2019, and will be based at the GNP+ offices in Cape Town, South Africa.