Pumza Mooi is worried. A resident of Port Elizabeth, South Africa, she is one of 2.5 million people in the country living with HIV but not currently on antiretroviral therapy.

“I’ve decided that I have to start,” said Ms Mooi. “No matter how strong my CD4 count or how low my viral load, it will never be as good as on HIV treatment. It is something I must do for myself, for my children and for those who look up to me. I am scared of getting sick,” she said.

Ms Mooi’s decision to start HIV treatment comes at a time of uncertainty for people with a compromised immune system, owing to the risk of a severe COVID-19 infection. There is currently no evidence that people living with HIV have any greater risk of acquiring COVID-19, but there is concern that a COVID-19 infection could be more severe for people living with HIV who are not taking antiretroviral therapy.

South Africa is under a 21-day lockdown to try to slow the spread of COVID-19 and Minister of Health Zweli Mkhize has urged everyone to take precautions to prevent infection, emphasizing the importance of everyone knowing their HIV status, getting tested and immediately starting treatment should they test positive.

“The thought of catching COVID-19 frightens me,” said Ms Mooi. “It is scary to think that I already have one virus [HIV] that my body is dealing with. I am asking myself, is my body strong enough, is my immune system strong enough?”

Ms Mooi acquired HIV many years ago, when the prevailing advice was to commence treatment if the patient experienced a reduction in their CD4 count, thus falling ill. She has been monitoring her status ever since. In 2016, the World Health Organization published new guidelines recommending lifelong antiretroviral therapy for all children, adolescents and adults, including all pregnant and breastfeeding women living with HIV, regardless of their CD4 cell count. In other words, anybody diagnosed with HIV should start treatment straight away.

UNAIDS is actively monitoring the impact of COVID-19 and working with networks of people living with HIV, the government and development partners to ensure that the concerns of people living with HIV are heard and reflected in the COVID-19 response. This includes identifying constraints on health services, encouraging longer, multimonth prescriptions of antiretroviral medicine and helping communities to provide solutions. 

Social networking

Life under lockdown is especially difficult for people living in informal settlements and UNAIDS has recognized the challenge of achieving self-protection, social distancing and containment in such areas. Added to this are fear-inducing and inaccurate reports about the coronavirus. “There is a lot of information going around but not all of it is true,” Ms Mooi said. “I am reminding people that the government has given us a WhatsApp number where we can get good information, and not to worry about other information. If it is true, the government will tell us.”

Luckily, Ms Mooi has a robust support network after she shared her HIV status online many years ago. “I know I will be looked after,” she says. She moderates Facebook and WhatsApp support groups for people living with HIV that have dozens of members, ranging in age from a 16-year-old born with HIV to a woman of 62 who has lived with HIV for many years.

Over the past few years, many in the group have shared their experiences of living with HIV and their experiences of taking HIV treatment, confronting stigma and discrimination and staying motivated. Their consensus is that taking and adhering to HIV treatment is the best option, Ms Mooi said.

Right now, there is a new topic in the groups. “They are worried about COVID-19,” Ms Mooi said. “I tell them don’t worry, stay home and practice good hygiene.” For the time-being, everyone knows they will have to sit tight and take care of each other remotely, to get through extended isolation.

The group fosters discussion mostly among women, although men are listening in. “I get messages from men asking why we don’t discuss issues affecting them, but if they don’t disclose they won’t always get the help they need,” she says. “I encourage men to share their stories and let us help each other.”

Looking ahead

Like most, Ms Mooi is already looking forward to being able to move about more freely again and to start HIV treatment. She is doing what she can to look after her family and to encourage her networks of people living with HIV. “We are doing the things we are told to do, like washing our hands and keeping away from other people, and just praying and hoping for the best,” she said.

The COVID-19 pandemic and the lockdown imposed by the Government of the Philippines to curb the spread of the disease are impacting the lives of people living with HIV across the country, creating a serious challenge to accessing life-saving antiretroviral therapy. To help address those challenges, civil society organizations have come together to support people living with HIV to access treatment. 

Through a coordinated community-led mechanism, Network Plus Philippines, Pinoy Plus Advocacy Pilipinas, the Red Whistle and TLF Share Collective, are working together in the implementation of a new guideline issued by the Department of Health. The new guideline directs local authorities to ensure that people living with HIV can collect their medicine at the nearest HIV clinic and encourages the use of courier services for the pick-up and home delivery of antiretroviral therapy in order to avoid the risk of increased exposure to COVID-19.

“For many people living with HIV, accessing antiretroviral therapy from the nearest treatment hub is a welcome development. However, the nearest facility may not be within walking distance, and public transportation has been restricted. To be able to reach the HIV clinic, some need to pass through checkpoints, where they fear disclosure of their HIV status, as a few have already reportedly experienced,” said Richard Bragado, Adviser of Pinoy Plus Advocacy Pilipinas, an organization of people living with HIV, and the Administrator of Network Plus Philippines, the national network of organizations of people living with HIV.

The Red Whistle, a platform that raises awareness about HIV, has mobilized a pool of 40 volunteers to collect antiretroviral therapy refills from treatment hubs and deliver them to people across the country. TLF Share Collective, a civil society organization working on the sexual health, human rights and empowerment of lesbian, gay, bisexual, transgender and intersex (LGBTI) people, tapped the volunteers of its partner community-based organizations to deliver antiretroviral therapy.

“People living with HIV are displaced by the pandemic. Some lost their source of income and had to return to their original residence after losing their jobs. Ensuring uninterrupted treatment is not to be compromised. This is an integral part of our work on human rights,” said Anastacio Marasigan, Executive Director of TLF Share Collective.

Home delivery is made possible through a joint effort of civil society organizations and health facilities. “We ask treatment hubs to issue a letter of authorization to show to the checkpoint authorities that the driver is delivering essential medications. We are also working with local authorities to avoid unintended disclosures of confidential information of our clients at the checkpoints,” said Benedict Bernabe, Executive Director of the Red Whistle.

To identify the nearest treatment hubs, lists of antiretroviral therapy clinics have been disseminated through different channels, with the Red Whistle partnering with MapBeks, an online LGBTI mapping community, to create the Oplan #ARVayanihan, a map that includes all treatment hubs and primary HIV care facilities.

People living with HIV can share and ask for information through different platforms. Among them is the PLHIV Response Center, established by Pinoy Plus Advocacy Pilipinas to link callers with services. The hotline disseminates information about treatment hubs available and gives advice on how to access antiretroviral therapy.

TLF Share Collective has developed a tool to monitor the delivery of antiretroviral therapy by the community volunteers. The organization also developed frequently asked questions cards and consolidated existing hotline numbers.  

“UNAIDS has regularly coordinated with civil society organization since the beginning of the COVID-19 outbreak, providing technical guidance and ensuring synergy with the efforts of the government,” said Louie Ocampo, UNAIDS Country Director for the Philippines.

The United Nations Development Programme and UNAIDS have developed a rapid survey to assess the different issues affecting people living with HIV in the Philippines. In addition to access-related issues, the results of the survey show the urgent need to protect human rights and facilitate access to mental health and social protection services. The findings have been shared with the government in order to ensure that actions are based on the constantly evolving situation in the context of the COVID-19 pandemic.

The COVID-19 pandemic has disrupted people’s lives around the world, including those of many marginalized people, who suddenly face additional burdens and vulnerabilities.

Many areas in Indonesia, which as of 6 April had 2491 confirmed cases of COVID-19 and 209 deaths, have put in place measures, such as physical distancing, to curb the spread of COVID-19. While effective in responding to the disease, many people have been impacted by the effects of physical distancing on the economy.

Out of 1000 people living with HIV and members of key populations surveyed by the Indonesian Positive Network, more than 50% are experiencing severe impacts on their livelihoods, including many transgender women. Sanggar Swara, a civil society organization of young transgender women in Jakarta, conducted a rapid assessment that found that more than 640 transgender people in greater Jakarta have lost their jobs, leaving them unable to support themselves. “On several occasions when the distribution of basic food staples took place, many of them could not access it as they do not have their identity cards on hand or simply due to their gender identity,” said Kanzha Vinaa, the head of Sanggar Swara.

Seeing the critical need for support, the Crisis Response Mechanism (CRM) Coalition, fronted by the civil society organizations LBH Masyarakat, Arus Pelangi, Sanggar Swara and GWL Ina, with support from UNAIDS Indonesia, decided to raise funds for the transgender community. “Since 28 March, we spread the information about the fundraising to communities and partners. Our plan was to collect the funds and distribute them to transgender women in need, with support from focal points in the areas,” said Kanzha Vinaa.

In less than a week, the CRM Coalition had collected more than IDR 67 000 000—around US$ 4100—and distributed food and hygiene packages to more than 530 transgender women in greater Jakarta. The packages cover the basic needs for one week. Ryan Kobarri, the head of Arus Pelangi, said, “Initially we only expected our close networks to respond to this call for donations. We were elated to see that the support and enthusiasm was much more than we expected. Not just from local networks, but even international networks gave their support. Someone even donated 100 kg of rice!”

Although there is uncertainty over how long the current COVID-19 situation will last, it is very likely that the need will persist in the coming weeks and months. The CRM Coalition continues to welcome donations from all around the world in order to keep the community afloat during these difficult times.

Since its establishment in 2018, the CRM Coalition has worked to coordinate and mobilize resources to respond to the persecution and discrimination faced by lesbian, gay, bisexual, transgender and intersex people in Indonesia, one of the most vulnerable communities in the country.

Donations to help keep this vital work going can be made by PayPal at paypal.me/kanzha or through Ryan Kobarri at ryan@aruspelangi.or.id.

On 9 March, I checked out of my hotel in Brazil. We had just finished a fascinating meeting on the integration of HIV with other health programmes and diseases. There was plenty of elbow-bumping and embarrassed smiles about the lack of embraces with Brazilian and global colleagues. We knew the wave must be coming, but the beaches still looked beautiful. We even really did drink Corona beer with supper.

I was excited and booked to go straight on to Boston for the 2020 edition of CROI, the conference on retroviruses and opportunistic infections. Apart from the consistently high quality of the science presented at CROI, I always love the corridors. There was always plenty of time to meet up with friends and colleagues, many of whom have been together over the past 25 years or more of the HIV pandemic. I saw Gita Ramjee at every meeting, and was looking forward to seeing her again.

Tragically, it was not to be. My phone pinged with an email announcing that the conference was no longer happening in Boston, but would be delivered virtually.

Gita was already in London on her way to the meeting from South Africa. Hearing that CROI was “virtualized”, Gita was delighted to stay on in London for a few more days. She was spending more time in London lately because she wanted to be with her sons and grandson, who live there. She visited the London School of Hygiene and Tropical Medicine, where she holds an honorary professorship for her work on HIV prevention trials. My colleagues there tell me that she was on her usual good form—kind, collaborative, straightforward and full of integrity and determination to make things happen. She flew back to South Africa that weekend and gave a talk at the London School remotely on 17 March. Two weeks later, she died, one of the first deaths from COVID-19 in South Africa.

Gita is an extraordinary testament to resilience and determination. She was born in Uganda and escaped from the Idi Amin regime. She continued her schooling in India and then went to university in the United Kingdom. There she met her future husband, a South African, also of Indian heritage. She moved to the Transvaal with him, but hated the segregated life, which contrasted so obviously with the more open society she had found in the United Kingdom. So they moved to Durban, which suited them better, and she began to build the two pillars of her life—her family and her career.

Her career as a strong leader of research on HIV prevention, specifically on women, particularly underprivileged women and sex-workers, has brought her global acclaim—lifetime scientific awards for excellence from South Africa, an Outstanding Female Scientist Award from the European Development Clinical Trials Partnerships, honorary degrees. To me, she was always a friendly face and someone to meet and talk to, not only about the science, but also about our sons and grandsons, London, Durban and beyond.

The COVID-19 wave is breaking over us now, and its power is awesome. Gita was a very early casualty of the African epidemic because she was a global superstar. Her death is a stark warning. Millions of poor people living in southern and eastern Africa, many of them living with HIV, are now facing a devastating challenge. The weak health and social systems, the dependence on piece work, the crowded housing, the lack of water and electricity all make it a horrible prospect. The death toll will rise steeply, in part because of direct infections with the virus, but even more so because of the impact on the overstretched health systems and weak social protection safety nets. How are the millions of scared people living in crowded, shared accommodation and dependent on their daily wages to buy food expected to maintain physical distance?

Gita believed in and fought for the rights and welfare of sex workers. Back in 2007, she told the Guardian newspaper, “The stories they used to tell us were horrific. That’s when I knew I wanted to be involved in the prevention of HIV infection in women.” I know that she would want us to step up and meet the challenge of COVID-19, not only as a public health crisis, but even more so as a challenge to inequity, poverty and lack of global solidarity.

Peter Godfrey-Faussett, Senior Science Adviser, UNAIDS

From 17 March, following the government’s declaration of a state of emergency in response to the COVID-19 pandemic, around 800 people living with HIV in the Republic of Moldova have been receiving antiretroviral therapy at home for free.

A team of social workers and people from the four regional centres for people living with HIV are ensuring the timely delivery of the medicines and are giving information on protection against COVID-19. The social workers, trained by the World Health Organization, explain how to prevent the transmission of the coronavirus, identify its symptoms and take the necessary action in the event that people contract COVID-19. 

The emergency measures put in place by the government will initially last until 15 May and include limitations on people leaving their homes except for going to work, buying medicines and food and walking their pets.

AIDS activists agree that the decision will help to avoid the risks encountered by people living with HIV associated with travelling by public transport and going to health centres to get their medication. Most importantly, it will help to avoid interruption of HIV treatment.

“We had to find the most effective solution to this problem, and we are proud that the representatives of the national AIDS programme found a solution,” said Ruslan Poverga, General Director of the Positive Initiative. “The medical sector, social services and nongovernmental organizations are doing everything possible to provide people living with HIV with access to treatment and reduce their risk of coronavirus disease.”

In the Republic of Moldova, more than 6000 people living with HIV are receiving HIV treatment, which they usually get from eight treatment facilities around the country, including prisons. In order to provide the medicines in people’s homes, the National HIV Programme Management Unit developed an algorithm to assess the risk of people living with HIV not being able to access their medicines, taking into account distance from the treatment facilities.

Identifying an efficient solution and obtaining all necessary political support and approval, as well as designing the algorithm and starting the implementation of the programme within one week of work, was made possible owing to the leadership of the Ministry of Health, Labour and Social Protection, the National HIV Programme Management Unit and the Positive Initiative. UNAIDS and the World Health Organization bureau in the Republic of Moldova provided guidance and technical and financial support to ensure the efficient implementation of the initiative.

“The delivery of antiretroviral medicines to people living with HIV in remote, rural and other areas of the Republic of Moldova, where there are no HIV treatment centres, through the involvement of nongovernmental organizations and regional centres for people living with HIV, is an amazing solidarity and mobilization effort by all partners,” said Svetlana Plamadeala, UNAIDS Country Manager for the Republic of Moldova.

“You’re welcome!”

Sunny Dawson (not his real name) jumped with joy when he received his medicine from Bai Hua. “You're an angel sent by God,” he said to him.

Mr Dawson is an English teacher at a school in a small town in northern China. In January, he went on a vacation to his home country in south-east Asia, but his journey back to China turned out not to be as easy as his journey out. The coronavirus outbreak that started in December 2019 in Wuhan, Hubei Province, and quickly swept across China has posed big challenges to everybody’s life. But because he is living with HIV, the challenges for him were probably greater.

Rushing back to China

News about the outbreak in China hit the headlines in Mr Dawson’s home country during his vacation. “All my family objected to me going back to China,” he said. But he loves China and wanted to go back. “I needed to rush back before flights were stopped,” he said. His family conceded, his father giving him a big bag of face masks before his departure.

He thought he was fully prepared, but when his flight landed, he could feel that things were different. All the passengers had to have their temperature checked, one by one. Mr Dawson was wearing heavy clothes that day and was sweating a little—his temperature read 37.6 degrees Celsius. He and some other passengers were sent to a nearby hospital for further tests.

He tested negative for COVID-19, but soon after learned from the head teacher of his school that the small town he works in has been put under lockdown—he couldn’t go back to where he worked.

Since he is living with HIV, he needs to take antiretroviral medicine every day. He had only taken a one-week supply with him on his vacation, though, and it was running out.

BaiHuaLin alliance of people living with HIV comes in to help

Mr Dawson remembered Bai Hua , the founder of the BaiHuaLin alliance of people living with HIV, a community-based organization dedicated to supporting people living with HIV, including help with refills of medicine. BaiHuaLin was the organization that reached out to him when he was scared and lonely after being diagnosed with HIV a year before.

The coronavirus outbreak left many people like Mr Dawson at risk of running out of their medicine because they were stranded away from their usual HIV service provider. The BaiHuaLin alliance helps people in need of HIV medicine to get their refills by using an extensive network of volunteers that covers the whole country and extends globally. “Too many people need refills these days. We are terribly busy,” Bai Hua said.

When he received Mr Dawson’s call for help, he told him to come to his office immediately to pick up the seven-day refill he had requested. However, only a few days later he had to return for more because his stay in Beijing had been extended indefinitely. “My colleagues told me not to go back in the near future because the shops are closed under the lockdown,” he said. This time, Bai Hua gave him a month’s refill.

A strong partnership

The UNAIDS Country Office in China also felt the impact of the COVID-19 outbreak on people living with HIV. “We received messages on social media from people living with HIV, expressing their frustration and desolation and seeking help,” a UNAIDS staffer said.

Because of HIV-related stigma, when faced with the risk of the disruption of medicines, people living with HIV often choose to keep their anxiety to themselves, afraid to reveal their status. “Some people say they would rather die than disclose their HIV status,” Bai Hua said. “One person sneaked out of his village and walked 30 kilometres to get the medicine.”

The UNAIDS Country Office in China has been working to ensure that the rights of people living with HIV are fully protected. In addition to giving out information, UNAIDS also actively works with the government and community-based organizations in China in order to ensure that people living with HIV get medicine refills.

Special pick-ups and mail deliveries of HIV medicines arranged by UNAIDS have reached more than 6000 people living with HIV in Wuhan.

Best yet to come

Mr Dawson finally got back home to the small town in northern China after staying in Beijing for more than two weeks. Still under quarantine, he misses an old man in the park near his apartment. “He was my calligraphy teacher. He always goes to the park, writing Chinese calligraphy on the ground,” he said. He gave Mr Dawson a piece of calligraphy, beautifully framed, that is now hung on the wall of his sitting room.

“I look forward to the day when the virus is gone,” he said, “So I can visit my friends and learn calligraphy in the park.”

Hospitals in Thailand are to dispense antiretroviral therapy in three- to six-month doses in order to prevent people living with HIV from running out of medicines and to reduce their need to access the health system during the COVID-19 pandemic.

The new policy, endorsed by the National AIDS Commission, which is chaired by the Deputy Prime Minister and Minister of Health of Thailand, will be implemented throughout the country, reducing the risk of exposure of people living with HIV to COVID-19 and reducing the burden on the health system and clinical personnel.

People living with HIV who are on antiretroviral therapy under the National Health Security Office (NHSO)—which accounts for 70% of all people living with HIV receiving antiretroviral therapy in the country—are already benefiting from the implementation of this measure. Hospitals under NHSO are extending the length of prescription of antiretroviral therapy for people with a stable HIV condition—people living with HIV who have taken antiretroviral therapy continuously for at least one year, who have suppressed viral loads, who haven’t presented side-effects and who are not pregnant.

“The National Health Security Office has confirmed that there are sufficient supplies of antiretrovirals for all people living with HIV on treatment across the country,” said Rataphon Triamwichanon, the Assistant Secretary-General of NHSO.

“Beneficiaries of the Social Security Insurance Scheme will be able to obtain at least a three-month supply of antiretroviral therapy during the COVID-19 pandemic,” said Amphan Thuwawitm, the Deputy Permanent Secretary of the Ministry of Labor.

Starting from October 2020, NHSO and the Social Security Insurance Scheme will unify the medicine prescription guidelines under the Universal Health Coverage Scheme to allow prescription of a six-month supply of antiretroviral therapy for all eligible people living with HIV.

“UNAIDS applauds Thailand’s leadership and collective efforts from all partners, resulting in timely decisions on implementing multimonth supplies of antiretroviral therapy to support people living with HIV,” said Patchara Benjarattanaporn, UNAIDS Country Director for Thailand. UNAIDS is working closely with the Ministry of Public Health, NHSO, the Ministry of Labor and the Thai Network of People Living with HIV to advocate for the adaptation of the same policy for all health insurance schemes, including private hospitals.

“Through our community members across Thailand, we are monitoring to ensure that hospitals and health-care staff are taking on the implementation of the new policy and are successfully providing multimonth doses of antiretrovirals,” said Apiwat Kwangkeaw, Chairman of the Thai Network of People Living with HIV. “Our peer educators, as members of the Continuum of Care Centre, have also started raising awareness about COVID-19 among people living with HIV and informing them on the precautions they should follow to prevent COVID-19 infection,” add Mr Apiwat.

The Thai Red Cross AIDS Research Center (TRCARC), a civil society organization under the umbrella of the International Red Cross, with support from Her Royal Highness Princess Soamsawali, the UNAIDS Goodwill Ambassador for HIV Prevention for Asia and the Pacific, has also taken important measures to continue to guarantee timely access to HIV prevention services for vulnerable populations.

“We don’t want that the COVID-19 situation becomes a challenging factor that deters people from taking an HIV test. Among the measures we are implementing, we have set up a visible platform outside our Anonymous Clinic with a screening system for every client, where we check temperature and any respiratory symptoms. Our laboratory staff members and counsellors have moved out from the clinic to the platform, where they provide HIV testing and prevention supplies like condoms, post-exposure prophylaxis and pre-exposure prophylaxis (PrEP), as needed. For those who are already on PrEP, we organize home delivery, which clients can request online,” said Nittaya Phanuphak, Chief of Prevention at TRCARC.

All the measures being taken in Thailand will contribute to avoiding potential disruption to HIV prevention, testing and treatment services during the COVID-19 pandemic and to ensuring that people living with HIV and key populations are not left behind.

It is no surprise that Birknesh Teferi’s first name means “revolution” in Amharic, the language spoken in Ethiopia. She exudes passion and self-pride; she’s the picture of health and well-being.

Her journey to this point in her life is indeed revolutionary—a story of resilience, hope and transformation. She has beaten tuberculosis (TB), survived cervical cancer and is living positively with HIV.

Ms Teferi was diagnosed with HIV and TB in 2003, a time when information about HIV, TB and sexual and reproductive health in Ethiopia was scarce and stigma and discrimination high.

According to the World Health Organization (WHO), Ethiopia is one of the 48 high-burden TB countries globally. In 2018 in the country, 165 000 people fell ill with TB and there were 27 000 deaths; 2200 of which were among people living with HIV.

After waiting 15 days for her test results, while the health-care worker went on leave, Ms Teferi was told that she was “positive”.

“I thought it was good news. I hugged the nurse in relief, only for her to tell me that being HIV-positive meant I had the virus,” she said.

Ms Teferi successfully underwent the WHO recommended treatment for TB—directly observed treatment short-course (DOTS)—which cured the TB but did not help her with her struggle to accept her HIV status.

“What followed was a period of hurt and heartbreak … Waiting for death,” she recalled of the aftermath of her diagnosis.

She describes herself then as a “drifter.” She did not disclose her HIV status because of stigma and worked as a sex worker to make ends meet.

“If a client had a condom, we would use it. If he didn’t, we didn’t. I tried to use them, but I had no money to buy them. That’s how I developed a sexually transmitted infection.”

During the treatment of the infection, Ms Teferi was diagnosed with cervical cancer and was referred from one health facility to the next, often in different towns.

She eventually found a “caring” doctor and had an operation to treat the cancer. “I was in so much pain, I couldn’t sit. I was miserable,” she remembers.

But when Ms Teferi started to take HIV treatment in 2008, her life slowly changed. She started to look after herself more. She insisted on condom use with her clients.

She met a group of women living with HIV from the Tilla Association of HIV-Positive Women in Hawassa, Ethiopia. The association focuses on capacity-building and training and support of women living with HIV. It runs an embroidery centre as an income-generating activity for women living with HIV, where Ms Teferi now works.

“I am now free of drifting. Life is so much better. If people feel that it is possible to live, possible to work, then life can change,” she said.

For the first eight months of her time at the centre, the manager assigned her a volunteer to help her with her physical recovery from her operation. For the first time, she had support from other women who understood what it was like to be her.

The women at the centre invited her to watch a film about living positively with HIV. “That movie gave me hope,” she says. “I started to learn more about HIV from my manager. I gradually got relief, better medical services and Tilla supported me financially and emotionally.”

While Ms Teferi is on HIV treatment and has been cured of TB, there are millions of people worldwide who still lack access to prevention and treatment for both conditions. TB is the leading cause of death among people living with HIV globally.

In 2018, there were an estimated 1.2 million TB deaths, 251 000 of which were among people living with HIV—this is a 60% reduction from 620 000 in 2000. Between 2000 and 2018, TB treatment alone averted an estimated 48 million deaths among HIV-negative people and TB treatment supported by antiretroviral therapy averted an additional 10 million deaths. However, progress is slow and needs to be accelerated in order to end TB by 2030 as part of the Sustainable Development Goals.

“TB is curable and preventable,” said Aeneas Chuma, the Director for the UNAIDS Regional Support Team for Eastern and Southern Africa, a.i. “It is critical in this moment of history, in the context of the global COVID-19 pandemic, that we ensure that people living with HIV who are diagnosed with TB have uninterrupted access to HIV and TB treatment. UNAIDS is working with governments and community partners to ensure that we adapt to a rapidly changing health context, with kindness, compassion and humanity.”

There is clear urgency for bringing quality and effective tuberculosis (TB) prevention, treatment and care closer to communities. These efforts should entail empowering communities to use innovative community-based TB services, which have been shown to have a high impact and to be cost-effective.

There has been an unprecedented global mobilization to support countries to end the TB epidemic. These efforts saw the scaling up of TB treatment for an additional 7 million people in 2018 and a reduction in TB-related deaths among people living with HIV by 52% since 2010.

Significant progress has been made towards reaching the United Nations High-Level Meeting on Tuberculosis target of 6 million people living with HIV accessing TB prevention services by 2022—1.8 million people living with HIV started TB preventive treatment (TPT), which reduces their risk of developing active TB disease, in 2018.

However, there are major issues of concern. During 2018, a total of 1.5 million lives were lost to TB, including 251 000 among people living with HIV, which is a third of that year’s 770 000 AIDS-related deaths. Around 10 million people fell ill with TB, 9% of whom were coinfected with HIV. We are still far away from reaching the global target of reducing TB deaths among people living with HIV by 75% by the end of 2020. While the estimated number of new TB cases among people living with HIV in 2018 was 862 000, only 56% of them were aware of their TB status. Less than half of the people living with HIV who newly initiated antiretroviral therapy in 2018 reported also initiating TPT.

More people-centred and community-based approaches that bring services closer to people in need are real game-changers and need be scaled up. For example, as an alternative to the six-month daily TB treatment regimen requiring patients to visit a clinic daily and be monitored by health-care workers that is implemented in some countries—the so-called directly observed therapy (DOT) approach—many programmes are experimenting with digital adherence technologies.

The medication event monitoring box approach involves the patient’s medicines being in a box—a signal is sent to the clinic each time the patient opens the box to access his or her TB medicines. The video DOT method involves patients recording themselves and sending a daily medication update video to their clinic.

These technologies are user-friendly and reduce the time that people are away from their regular activities and reduce the cost of daily transport to the clinic. They provide people with autonomy and empower them to manage their treatment and their health in their home while being monitored for treatment adherence, as well as improving access by vulnerable groups and reducing stigma.

The LF-LAM (lateral flow urine TB mycobacterial lipoarabinomannan) is a simple rapid point of care urine test that the World Health Organization recommends as a game-changer and as a part of a diagnostic algorithm for people living with HIV. It allows the testing of adults and children in health facilities and community-based settings. To date, however, only seven countries among 30 high-burden countries are implementing the LF-LAM tests.

Newer shorter regimens for TPT, such as three months of weekly rifapentine and isoniazid, have been increasingly available owing to recent price reductions and policy shifts. The regimens have fewer side-effects than longer regimens and higher rates of completion. Communities play a key role in supporting people living with HIV to initiate and complete TB preventive treatment, monitor side-effects and seek care for early signs or symptoms of TB.

“Especially in this time of COVID-19, we absolutely need to move on innovative models that allow people to continue their care at home. This means putting in place the quality and supports that people can access virtually, by telephone and in the community. It means delivery models that recognize and respond to the daily constraints on people’s lives and putting the tool directly in their hands to succeed. Let’s empower people to stay connected, continue their care and access additional supports including facilities when they matter most,” said Shannon Hader, the Deputy Executive Director, Programme, of UNAIDS. 

Nining Ivana, the local coordinator of the Indonesia Positive Women Network (IPPI), Jakarta, was shocked when she received a voice message from one of the network’s new members.

In the message, Mutiara Ayu (not her real name) said that she had been beaten by her husband and abused by her husband’s family when they discovered that both her and her son were living with HIV. Research by IPPI in 2011 found that, like Ms Ayu, more than 28% of its members across Indonesia had experienced violence from their partners and family members because of their HIV status. It is known that women who are victims of sexual abuse are also at a higher risk of contracting HIV.

To address the linkages between HIV and violence against women, IPPI is holding a series of workshops to better integrate services for HIV care, support and treatment and against violence against women across eight cities in Indonesia. IPPI members who are survivors of violence, local HIV service workers from public health clinics and managers of women’s shelters have been attending the workshops, at which the results of the IPPI’s research are disseminated, needs are discussed, experiences are shared and a local action plan to better integrate both services is decided upon.

“I heard stories from HIV service providers at public health clinics. They couldn’t understand how a woman living with HIV had such a low CD4 level despite routinely visiting the clinic. Apparently, her husband banned her from taking her antiretroviral medicine. They know that these women are more likely to be victims of violence, but they do not know where to refer them to, since there is no standard operating procedure beyond their health care,” said Chintya Novemi, the person in charge of integrating services for HIV and violence against women at IPPI.

In addition to HIV care, support and treatment services, women living with HIV who are victims of violence may need counselling for trauma and legal aid should they decide to pursue litigation. Through its HIV & Violence against Women Services Integration Project, IPPI aims to bridge this gap. When there is not a formal relationship or mechanism, or it is not clear, informal referral mechanisms made by local stakeholders could save a woman’s life.

“After meeting with workers from services for HIV and violence against women at the workshop, it became clearer to me where I should refer IPPI members who encountered violence and how we should handle their cases,” said Ms Ivana, who joined the workshop in Jakarta.

Upon finishing the series of workshops, IPPI hopes to disseminate the results to national stakeholders, including the National Commission on the Elimination of Violence against Women, the Ministry of Health, the Ministry of Law and Human Rights and others. The ultimate goals are to gather evidence regarding these interlinked issues and advocate for a national standardized mechanism to protect women living with HIV from all forms of gender-based violence.