In 2020, COVID-19 changed everyone’s lives. It exposed and exacerbated inequalities, and put extreme pressure on health systems around the world. Medical and healthcare supply chains were disrupted, with many countries warning of the critical risk of antiretroviral (ARV) stock-outs. We also saw HIV prevention services literally disappear overnight – with disastrous consequences.
Lockdowns and other COVID-19 restrictions enforced all over the world resulted in the communities most affected by HIV experiencing an erosion of their human rights and a surge of gender-based violence. Government-imposed COVID-19 restrictions, such as curfews and round-ups, have been used to oppress marginalised groups.
Throughout 2020, people whose lives were already precarious were pushed even closer to the edge.
With health systems struggling to cope with the pressures of COVID-19, there is a very real risk that gains achieved through the HIV response will be lost. However, with an integrated approach, we can end AIDS and respond to pandemics like COVID-19. The community and health systems the HIV movement has built over the last four decades provide a strong foundation for pandemic preparedness and response. We are calling on governments and donors to protect the gains we have achieved on HIV and sexual and reproductive health and rights, re-commit to ending AIDS by 2030, and invest in health systems that can deliver health for all.
marginalised and other vulnerable people were reached with HIV prevention programmes
marginalised and other vulnerable people received an HIV test and know their results
newly diagnosed people were linked to HIV care
marginalised and other vulnerable people were provided with sexual and reproductive health and rights interventions
young people aged 10–24 years were reached with comprehensive sexuality education and/or life skills-based HIV education
people who use drugs were reached with needle and syringe programmes
individuals received opioid agonist treatment for at least six months
needles and syringes were distributed
community-based organisations received a pre-defined package of training
The figures here are based on data reported by 49 Frontline AIDS partner organisations.
With the world’s attention focused on a new pandemic in 2020, we intensified our commitment to speaking out about the HIV prevention crisis. Infection rates have plateaued in the past five years. Given the impact of COVID-19, there is a huge concern that we will start seeing new HIV infections rising again.
Our focus on ‘fighting back for HIV prevention’ has taken many guises throughout the year, from a rousing World AIDS Day campaign bringing together HIV activists on the frontline of the epidemic, to a series of shadow reports tracking progress – or lack of – on HIV prevention which has led to significant policy changes at national level in at least three countries. Our unrelenting demand for political leadership and full funding for HIV prevention contributed to UNAIDS, the Global Fund and other donors now acknowledging HIV prevention as an urgent priority.
Following the onset of COVID-19 in early 2020, we developed a Call to Action on HIV, TB and COVID-19, which was endorsed by almost 200 civil society partners, from global coalitions to frontline community organisations. The Call urges the international community to sustain progress on HIV and TB, to adapt HIV and TB programmes to also address COVID-19, and to protect human rights.
We provided leadership for the HIV sector to get behind the global movement for a People’s Vaccine for COVID-19, reminding the world of the lessons from the HIV epidemic in which lives were only saved when HIV treatment was made accessible across all countries affected by AIDS, thanks to community activism both in the North and South.
We built solid foundations for the Frontline AIDS partnership to start influencing in the hotly contested political arena of comprehensive sexuality education (CSE). CSE ensures young people are informed about relationships and sexuality in order to navigate a world where gender-based violence, gender inequality, early and unintended pregnancies and HIV still pose serious risks to their health and well-being . We supported young advocates in Uganda to counter increasingly vocal opposition to CSE by conservative groups and religious leaders, and force the government to deliver on its promises. In December, we supported a young woman advocate from our partner AWAC Uganda to speak out at the UNAIDS Programme Coordinating Board, bringing the message that access to the lifesaving information that CSE provides is a non-negotiable and calling for strong commitments on CSE in the new global AIDS strategy.
The impact of COVID-19 has been acutely felt by marginalised people, who have experienced a surge in human rights violations. The effects of crackdowns in lockdown have been severe – not only on the health and wellbeing of individuals, but on the organisations that provide them with support and services. Stigma and discrimination have increased, with marginalised communities indirectly associated with – or even directly blamed for – the introduction or spread of COVID-19.
Since 2016, our Rapid Response Fund has been providing emergency grants to LGBT people who are facing human rights abuses that prevent them from accessing HIV services. In 2020, demand for these emergency grants almost trebled due to the impact of the COVID-19 pandemic.
With the flexibility and help of some of our generous donors we boosted the Fund and extended its remit to include sex workers, people who use drugs and people living with HIV. During 2020, we issued 190 grants totalling over $1.2m and reaching nearly 60,000 individuals in 42 countries.
Safely relocate LGBT people who had been released from prison following charges for breaching COVID-19 regulations and to provide crucial medical care for those who incurred injuries or lapses in medication in the process of arrest and detention.
Buy bicycles to get urgent HIV medication to community members unable to leave their homes due to COVID-19 measures and an increase in stigma and discrimination in public places and health facilities.
Give legal teams personal protective equipment (PPE) to be able to visit and represent detained LGBT people, some of whom were assaulted while in detention.
Provide shelter for LGBT people unable to access existing shelters due to increased demand in the COVID-19 context.
Provide urgent nutritional support to people living with HIV to help with adherence to HIV treatment.
Run telephone support services for people living with HIV unable to attend in-person groups due to COVID-19 measures.
Conduct and make referrals for physical and mental health support for key populations, and people living with HIV made homeless by the impact of COVID-19.
As reports of human rights violations increased with the spread of COVID-19, our partners wanted to use REAct – our flagship community-led human rights monitoring and response programme – to support their communities. We adapted the programme to make it fit for purpose during the pandemic – providing training and technical support
virtually and adapting documentation tools to better capture gender-based violence incidents. In 2020, REAct went live in six new countries, and is now being actively implemented in 12 countries in total. Altogether, 2,233 clients were registered, and 2,345 cases of human rights violations documented across the REAct portfolio in 2020.
Sarah Chirwa from Dignitate Zambia Limited (DZL), a Frontline AIDS partner focusing on the human rights of LGBT communities, describes how some LGBT people effectively had to ‘go back into the closet’ for fear of their safety when lockdown restrictions came into force. “Some community members were being verbally harassed in their homes. Some were outed and chased out by their guardians. We recorded a very high level of mental health distress because they’re living in homes with people who can’t accept them. We also recorded some suicides by community members.”
DZL used a COVID-19 Emergency Fund grant – administered by Frontline AIDS in partnership with the Elton John AIDS Foundation – to pay rent for a period of three months for community members most at risk of homelessness, as well as essential groceries such as cooking oil, potatoes and mealie-meal to be able to make the staple food nshima. The organisation worked with local healthcare providers to support people living with HIV to access ARVs through mobile outreach and teamed up with psychosocial counsellors to offer therapy to those really struggling with their mental health.
Jomell is a young trans woman living with HIV who lost her income when lockdown started, no longer able to support herself through her part-time sex work. “DZL has done a lot for me,” she says. “They have given me health packages like sanitisers and stuff like that for me to stay safe and my friends as well.”
For too long now, too many areas of the HIV response have experienced stagnation. We need to bring fresh thinking, energy and practical solutions to the table. Living in the shadow of a pandemic this past year has taught us that new ways of working are not only possible but can lead to things being done better.
Communities affected by HIV have been the driving force behind some of the most inspiring responses to the COVID-19 pandemic. All over the world, our partners flexed swiftly and decisively to find different ways to continue reaching their clients, from organising home deliveries of antiretrovirals by bicycle and take-out methadone doses to telephone counselling, online outreach and more.
The impact of COVID-19 on sex workers has been highly disruptive with livelihoods threatened, an escalation in institutional violence and often no access to social protection programmes or to information and communication technologies. In Latin America, our regional partner RedTraSex coordinated a continuous cycle of virtual training and online events to share crucial health and self-care information and upskill leaders of national sex worker organisations, as well as to gather intelligence on human rights violations.
In Lebanon, women living with HIV and sex workers both reported experiencing increased stigma during the COVID-19 pandemic and encountered difficulties regarding their check-ups, HIV testing and SRHR services. Frontline AIDS partner MENA Rosa helped maintain online communication between the clients and their healthcare focal points and arranged virtual sessions with psychologists for women living with HIV experiencing depression, fatigue and fear. They also provided food boxes, hygiene kits and financial aid.
In India, the Mizoram Drug Users’ Forum supported by Alliance India successfully lobbied the government to allow new clients to register for opioid agonist treatment. This service had initially been cut back because of the pressure that COVID-19 put on the health system. The government even went on to allow take-home methadone and buprenorphine which it had been opposed to for years. The Forum also arranged for buprenorphine to be delivered to people who use drugs who could not make it to the clinic and set up a helpline managed by experienced peer leaders.
With reports from Kenya showing that violence against women who use drugs rose during the COVID-19 lockdown, partners from the PITCH programme formed a response team with police and a referral system linking vulnerable women with legal and medical services. Women who use drugs also received training in counselling, mediation and conflict resolution to assist their peers. Additionally, advocacy with policy makers is taking place to ensure that the lockdown experiences of women who use drugs are being heard and understood.
This year has been a stark reminder of how interconnected inequality, mental and physical health and HIV are in the lives of the communities we work with. We ramped up our work on mental health in our READY+ programme, which reached 20,000 young people with holistic and integrated HIV care in 2020, and tested new packages of support for mental health and livelihoods in our SRHR Umbrella programme in Uganda. We also published an evidence review into ‘What works’ to support the mental health of young people living with HIV.
Throughout 2020, we have continued to develop and advocate for innovative packages of support for people who use drugs. An important advocacy win was the significant increase in harm reduction funding in Mozambique, where the Global Fund funding request for 2020-2022 more than doubled from an initial budget of $2 million to $4,7 million. We also saw the opening of Uganda’s first opioid agonist therapy (OAT) programme, which was a result of years of advocacy by the Ugandan Harm Reduction Network (UHRN), supported by our PITCH programme.
Her journey began as a community adolescent treatment supporter (CATS) though our READY+ programme, where she provided support, counselling and information to other young people living with HIV. After having her son in 2013, she became a READY to Lead mentor supporting other young mothers living with HIV to take their medication correctly and get treatment for their babies.
“When I became a CATS, I started to accept myself as I was, so I could move on with life,” says Lydia. “After that, I had my child, and he is [HIV] negative and I am so proud of that. As a young mentor mum, I really feel good because none of the babies I have monitored are HIV positive.”
COVID-19 has resulted in shrinking domestic resources and a contracting world economy, leaving less resources for HIV – in particular for interventions targeting criminalised populations, who are already politically unpopular. It is now more pressing than ever to ensure that a community-based HIV response is included in countries’ universal health coverage (UHC) plans and policies, thus securing essential HIV services for everyone as part of standard healthcare policies.
Through our PITCH programme we have supported communities to make their voices heard in key UHC decision-making spaces. In Uganda, the PITCH partnership implemented a very visible UHC4All online campaign reaching more than 4.5 million Ugandans with core advocacy messages, some of which were retweeted by government. From this, Ugandan PITCH partners received an open invitation to the national UHC consultation process where affected communities have an opportunity to influence both the UHC process and policy environment to ensure that no one is left behind.
Equipping communities to track domestic financing is an important component of holding governments to account. Under PITCH, we worked with 31 community-based organisations in Indonesia, Kenya, Nigeria and Zimbabwe to strengthen their knowledge on health financing and budget advocacy. The partners were then able to take part in discussions with key decision makers to engage more closely with national budgeting and finance processes. In Zimbabwe, a submission from PITCH partners contributed to a three percent increase in the 2021 national budget allocation to healthcare compared to the previous year, from 10 to 13%.
“We have been working with the police in different ways for around five years now”, said Khuất Thị Hải Oanh, SCDI’s Executive Director. “Part of this work is providing police with information so they can see there are alternatives to punishment and that they can be part of the solution.”
SCDI is campaigning for people who use drugs to access voluntary, community-based, person-centred harm reduction services rather than compulsory ‘rehabilitation’.
With support from the PITCH programme, SCDI has been generating practical evidence to show the positive impact this kind of community-based treatment can have, both for people who use drugs and wider society. In a three-year pilot in Hanoi and Ho Chi Minh City, police officers refer people who use drugs for an assessment, which examines their health, legal and socio-economic needs rather than holding them in detention.
This assessment provides entry to a range of services, including methadone treatment, HIV testing and treatment, vocational training, legal aid, peer support, mental health services, and hepatitis and tuberculosis screening. By 2020, the final year of the initiative, around 200 police officers were participating, and more than 600 people who use drugs had been diverted from detainment. Convictions among participants are now rare and many have been able to reconnect with the wider community.
We remain committed to delivering on our mission (ending AIDS for everyone, everywhere), but we will need to adapt the Global Plan of Action – our strategy – to reflect the impact of COVID-19 on the HIV response. We will also make necessary adjustments to our operating model in order to move towards one that is resilient yet flexible enough to withstand future epidemics and the changing funding landscape.
As in 2020, we will work this year to continue shining a spotlight on HIV, advocate for keeping HIV on the agenda, sustain past gains and fighting back for prevention. We will continue to transform and innovate as we seek to become the best organisation we can be and to maximise our impact for marginalised people most affected by HIV.