Tadala still has flashbacks to the moment when her little sister stopped breathing. That day the children’s ward of Queen Elizabeth Hospital in Blantyre, Malawi, was filled with patients. Despite the whirring fans overhead, the summer heat was unbearable. Nurses rushed from bed to bed, adjusting health charts and administering medication. At first they didn’t notice the small girl in an oversized dress, crying alone by her sister’s bed. “It was too big for her, a one-year-old girl, the disease was too big,” Tadala recalled of her sister’s first battle with HIV. Her mind went blank as the doctors appeared beside baby Leoni*. More medicines arrived, followed by needles, and intravenous fluids. Tadala held tightly to her sister’s tiny hand. “She’s going to be OK,” a doctor told her in native Chichewa. Tadala slept on the wooden chair by her sister’s bed that night. It was another six months before she could take Leoni home.
At the time, Tadala didn’t really understand what people meant when they spoke about HIV. She had just turned 10, but in the the space of a year, the pieces of her life in the town of Limbe just outside Blantyre had quickly come unstuck. Her father had died suddenly and soon after, her mother Violet* and newborn sister Leoni were rushed to different hospitals with HIV complications. Tadala found herself in charge of the family’s small house and her four other siblings. “I was so scared,” she said. “All I could think was: it’s over for us. It’s like a journey when your car has broken and you feel like you can never continue on.”
Around 1.1 million people in Malawi are currently living with Human Immunodeficiency Virus (HIV); roughly 10 percent of the population, but it is an illness with an impact far beyond the people who get sick. Over the past two decades, the global AIDS epidemic has impacted the African continent severely, however, recent efforts to combat the spread of HIV have seen remarkable success. The percentage of people living with HIV in Malawi dropped dramatically to 10 percent from 16 percent over the last decade and the country’s aggressive investment in ‘treatment as prevention’ has led to a widespread shift in perspective on how to eradicate the virus. The President’s Emergency Plan for Aids Relief (PEPFAR), along with the United Nations and The Global Fund have pledged to end AIDS by 2030. The goal is to provide universal Anti-Retroviral Treatment (ART) for every patient diagnosed, regardless of their viral load (or CD4 count). But, with 1.9 million people worldwide becoming newly infected every year, the challenges to containing the virus are also rapidly evolving.
In July of 2016, UNAIDS Chief, Michael Sidibe, announced that “the world needs to take urgent and immediate action,” after a stall in the rate of decline of new HIV infections. “We are sounding the alarm,” he told the global media. “If there is a resurgence in new HIV infections now, the epidemic will become impossible to control.”
Dr. Sithembile Chithenga, who goes by Thembi, is a young resident physician at the Queen Elizabeth hospital in Blantyre. After completing high school and college in the States, Thembi moved back to Malawi for medical school and residency. Though Malawi’s medical system is still underfunded and overstretched, she explained, many things have changed since she returned to the country. “People are more open to talking about HIV now than ever,” she said, as she pulled open the heavy door to the maternity ward. “It’s everywhere. It’s on the TV. It’s on the radio. It’s in books, magazines. Communities are really being encouraged to talk about it, and that’s new. It makes a difference.” As she made her morning rounds the maternity ward buzzed with activity. Newborn inhabitants wrapped in woollen hats and brightly printed, traditional chitenje cloth lay in cots along the walls. A young mother rocked a pair of newborn twins anxiously in the corner. “Some help over here please, sister,” Thembi called out and a nurse moved quickly to her side to lift a sleeping patient. “I think the biggest success stories have been in preventing mother-to-child transmission,” she explained, while scribbling a prescription. “People really want to give their children a better chance.” She gestured around the crowded ward; “some of these women have travelled miles to get here.”
Malawi has recorded positive change with its focused approach towards preventing mother-to-child transmission of HIV. Best practices from the country were quickly adopted as the recommended guidelines of the World Health Organization (WHO). Through the rollout of its Option B+ program, which puts HIV positive expecting mothers on treatment regardless of their CD4 count, Malawi increased the number of mothers being treated with antiretroviral drugs for life by 700 percent. Today, over 54,000 pregnant woman are receiving ART treatment, regardless of their CD4 count, or viral load, while every child born in hospital is now immediately tested for the virus at birth.
Even with the success of Option B+ Malawi still faces other challenges. An estimated 530,000 children in in the country are currently AIDS orphans, having lost either one or both parents to the disease. Without the support of a family network, many struggle to cope. Marie da Silva founded The Jacaranda School for Orphans 14 years ago in the Limbe district of Blantyre, after losing 12 members of her extended family to AIDS, including her father. The school now provides free education to over 400 orphans, many of whom were born with HIV. “When we first opened the school you could see the effect of HIV and AIDS on many of the children, on their skin, getting sick a lot, now you cannot really identify visually who has HIV or not,” explained the School’s Executive Director Luc Deschamps. “The medication itself is not everything. There are other things around it that are also needed,” added da Silva, seated outside her home, which backs onto the school grounds. “So many people here lack a support system.” Da Silva has become something of a local celebrity over the years as The Jacaranda School has developed extensive programs to support its HIV positive pupils, providing everything from supplemental nutrition to a school nurse and a trained counsellor for psychological therapy. But they have also seen the challenges first hand. “Sometimes, when the child reaches puberty they can kind of rebel,” explained Deschamps. “We make it clear to them that they need to protect themselves and they need to protect others.”
Coming to terms with a lifetime of treatment and constant medication has been a struggle for many Malawians living with HIV, especially those diagnosed before presenting any obvious symptoms of the virus. The ART side-effects can include drowsiness, nausea, dizziness and difficulty sleeping, alongside potential kidney damage after years of use. Some side effects can prove disruptive to the high pressure stakes of juggling work and family life.
Over 40 percent of Malawians earn just under a dollar a day, and financial strain is particularly high for one-parent families. This is true in Tadala’s house where her mother Violet* has worked to support her six children following her husband’s death from AIDS 11 years ago. Since she contracted HIV, Violet struggles to keep her weight up and feels the cold acutely during Blantyre’s winter months. Lying awake at night she often feels overcome with anxiety. Travel to collect ART medication for herself and her youngest daughter, Leoni, is always problematic, Violet explains. When she feels well enough, she sells rice and charcoal in the local market, but paying for transport to and from the hospital can cost her a week’s wages. The waiting time to see a clinician and collect her drugs is usually around four hours, which means missing a whole day of work. “I don’t feel I can tell anyone about my HIV status. There is still a stigma,” she said, speaking slowly in Chichewa. “People get scared and then they won’t buy from you in the market. If I’m too ill to work, then the family will struggle to eat. The stress can be overwhelming.” She paused, covering her face with her hands. Tadala quickly came to her side. “It’s ok mama,” she whispered.
Across sub-Saharan Africa women account for almost 60 percent of adult HIV cases and, despite the improvements in access to medications, young women aged between 18 and 25 still remain a high risk group when it comes to HIV infection. This demographic still accounts for one in four new infections across the African continent. “For these girls there’s an empowerment issue around negotiating safe sex and around negotiating delaying sex, even having the self efficacy to negotiate having one partner and not multiple partners,” says Dr. Sufia Dadabhai, Field Director of Clinical Research for the Johns Hopkins Bloomberg School of Public Health in Blantyre. “All of these things take a lot of self confidence and the right environmental and economic circumstances.”
In order to reach these key populations, researchers are now working on more innovative prevention ideas. The Johns Hopkins Clinical Research project in Malawi has been heavily involved in the recent ASPIRE initiative (promoting girls’ empowerment through education and health activity) and The Ring Study. Both sets of trials recorded breakthrough results for a vaginal ring that releases low levels of anti-retroviral drug. The device can be worn for 30 days at a time and is designed to help young women protect themselves from initial HIV infection. “One of the beauties of this study was that is was really addressing the acute needs among women,” pointed out D.r Dadabhai. “It maybe the first female driven HIV prevention method that the world has seen,” she added.
In June of 2016, United Nations member countries pledged their commitment to achieve the milestone of 30 million people on ART medication by 2020. While the target may seem ambitious, cheaper drugs have given a boost to international progress. “Treatment that cost $10,000 per person per year 15 years ago today is priced at just $100 per year, thanks to fierce competition among generic medicine producers in countries like India,” explained Medecins Sans Frontieres (MSF) policy advisor Sharonann Lynch. The latest scientific research has conclusively highlighted that universal treatment is a successful form of HIV prevention and the WHO recently changed its guidelines to reflect this consensus. However, as a result, the need for aggressive investment in treatment has increased. To meet the current target of an AIDS free Africa, an extra $12 billion dollars will be needed annually by 2020 and $8 billion by 2030. Turbulence in the global economy has added a further complication to the fight against HIV. UNAIDS reports that international funding has dropped to its lowest levels since 2010. This is a worrying trend for many African countries. For example, Malawi’s successful effort to tackle its HIV/AIDS epidemic is highly dependent on foreign aid, and it will require continued help if it is to spend the projected 8 percent of its total GDP to provide treatment for every person currently living with HIV.
As the economic pressure continues to mount on African nations, Malawi’s President Professor Peter Mutharika has added his commitment to ending HIV/AIDS in the country by 2030. Speaking at a UNAIDS meeting in January, the President pointed out that Malawi has upped its HIV coverage by 82 percent in the last decade. “Malawi now has over 600,000 people on anti-retroviral therapy and more than half of the estimated 1.1 million Malawians living with HIV are on treatment,” he told the press. But treatment for all comes with its own set of challenges, including stretching an already stressed public health care system.
Outside Dr. Ken Malista’s office at Queen Elizabeth Hospital, the waiting area quickly reached maximum capacity. People shared chairs and benches or stood in line, waiting to pick up medication or test results. A flickering television played BBC World News. “If we do not increase our staff numbers and the amount of space in both the clinic and the pharmacy, it will be a huge burden for the hospital,” said Dr Malista, from behind his large desk that took up the majority of a cramped office. Dr Malista returned to Blantyre 10 years ago to manage and direct ART distribution at Queen Elizabeth Hospital after completing his medical training in the United Kingdom. Today, his hospital clinic sees an average of 250 patients a day and provides free medication to 11,000 people. Under the new ‘test and treat’ guidelines being rolled out, the hospital estimates those numbers could potentially double, creating a need for still more health care staff. Just over half of Malawi’s health workforce has only limited training for dealing with HIV.
Down another corridor, the pharmacy area was full with boxes upon boxes of ART medication and condom packets that line every shelf and take up most of the floor space. A stressed-looking pharmacist in a white lab coat and round glasses ushered patients into the small room, where he scanned their health passports before presenting them with ART supplies. He tossed the empty packets into another box behind his desk. To decongest clinics and expand coverage, patients are now being given three months of ARTs rather than having to return to the hospital every month. Under a new scheme pushed by PEPFAR and The Global Fund, those supplies could be increased further, meaning only bi-annual patient visits would be required. “This is beneficial for the patients in terms of reduced travel costs, but the problem we see now is in terms of follow up,” Dr Malista explained. “People forget to come back, or some stop taking their medicine so we see may see more defaulters.” Having to order such large quantities of medication also poses a storage challenge. The hospital is still waiting to receive the funds to complete its clinic expansion plan.
Back on the wards, Thembi slung her handbag over her shoulder and leaned against a wall outside the hospital, taking a short break from her rounds. Her phone buzzed continually. “My frustration is always, I wish we could provide other services as well as just giving people their medication,” she said, shaking her head slowly. “Contracting the virus doesn’t just impact people’s current health but it impacts their livelihood, it impacts every aspect of their family, of their psychology. It touches every single aspect whether we want to admit it or not.” She looked at her watch, there was always more to do. The day was far from over. “As health providers, I think what’s important is just reassuring people: telling them it’s going to be fine and it’s not the end of everything.”
Tadala sat in a wicker chair next to the window. The next day she would take her end of term exams. The red dust on the floor stained the large bags of rice stacked in the corner of the house, seeping up the sides. A pile of her drawings and a notebook sat on the table beside her. The one lightbulb in the room was usually switched off, so as not to attract mosquitos, but today it was lit up. Its weak glow doused the room in a yellow light. Tadala spoke about her favourite memory. It was the day her mother came home from her long stay at the hospital, she said. The whole family had cooked together that evening. The girls chopped vegetables from the garden and prepared a meal of chicken and rice. It was a warm night but they let the fire burn late. Each of them told stories. The boys helped their mother, jumping up to refill her plate though she could not eat much. Tadala held Leoni in her lap. “We all spoke about what we wanted to be and what we would do in the future,” said Tadala. There was laughter and singing and fruits for dessert. “And my mother said, I want to live until I’m 80 and be here with you all.”
She recalled the details, piece by piece. “I always think about that day when things get hard,” she said. “No matter what, we have love. We are together and we are the same, no difference.”
*Certain names have been changed to protect privacy.