Report by Katherine E. Bliss and Michaela Simoneau
After nearly two years, the ongoing events of the Covid-19 pandemic continue to set back progress in achieving high-priority goals for global health, including providing urgent help to children living with HIV.
From the diversion of health resources for outbreak response, to the negative social, economic, and political effects of curfews and quarantines, the repercussions of the pandemic are threatening decades of progress in pediatric HIV prevention and treatment in countries like Kenya around the world.
In 2019, an estimated 1.4 million Kenyans were living with HIV, 90,000 of whom were children under the age of 14. The number of people in Kenya living with HIV places the country among the top ten globally, but in the decade prior to the pandemic, Kenya had experienced significant progress in decreasing the number of new pediatric HIV infections.
The Kenyan government, in cooperation with international and non-governmental partners, had invested considerable human and financial resources into programs to prevent HIV transmission and ensure that people living with the virus can access the services they need to stay healthy.
Now, the Covid-19 pandemic has threatened to undermine these achievements. Lockdowns, disruptions to transportation routes, and people's fears of visiting clinics have led to interruptions in HIV testing and the provision of HIV services at all levels.
Redoubling efforts to help countries such as Kenya meet ambitious global goals regarding the elimination of pediatric HIV/AIDS by 2030 should remain at the forefront of national and global health policy discussions, even as pandemic response activities continue. But understanding how the pandemic has affected children living with HIV requires listening to them and their families about their experiences during the pandemic and understanding what they need. Their perspectives can inform efforts to restore services and help create plans for continuity of care in future health crises as well.
Kenya has been a focus of global HIV programming efforts for several decades, with strong results in recent years. Achieving a high level of antiretroviral treatment coverage for pregnant and breastfeeding women was a particularly important success.
This has enabled Kenya to make steady progress in reducing the number of new HIV infections among children, from 23,000 in 2010 to just 5,500 in 2019. Such successful prevention of HIV transmission will have a strong impact down the line as these children grow up and are able to live free of HIV.
But ensuring HIV-exposed children are tested soon after birth remains a challenge. Without access to medicines, especially child-friendly formulations of powerful antiretroviral drugs, many children living with HIV will die before their fifth birthdays. In 2019, an estimated 3,100 children died from HIV in Kenya.
As of November 2021, Kenya has experienced more than 254,000 confirmed Covid-19 cases. Given that Kenya’s Covid-19 testing rate is lower than that of many other countries in the region, these numbers may obscure a much greater toll in Kenya than official numbers reflect.
Efforts to mitigate this crisis have significantly disrupted efforts to protect and support Kenyan children living with HIV. Since 2020, health workers have been diverted to outbreak response, HIV clinics have been converted into Covid-19 treatment units, and HIV diagnostic platforms have been used to process Covid-19 tests.
A clinician checks patient records at a sub-county hospital in Homa Bay County.
| Photo by Sala Lewis for the CSIS Global Health Policy Center
Moreover, each successive wave of Covid-19 viral transmission has provoked a new set of stringent prevention measures. Following the release of guidance from the Ministry of Health, clinics reorganized waiting areas to ensure distance between patients, set up isolation areas for patients who present with a cough, and staggered appointments so that fewer people are waiting to see care providers at any given time. For people living with HIV, this has meant more limited access to appointments and reduced opportunities to interact with caregivers and peers.
Access to health services in Kenya finally began to recover in late 2020 and 2021. But some people continue to avoid clinics. Experts are concerned that fewer HIV cases are being identified, meaning there are likely to be delays in treatment as well. Attempting to tackle these issues has been a challenge for health workers and patients alike.
The economic fallout from the pandemic in Kenya has also had an impact. With job losses and reduced incomes, many people have reported being unable to access adequate food, with more than 40 percent of populations living in informal urban settlements believed to be food insecure. Patients who must take antiretroviral medicines with food have reported skipping doses because they do not have enough to eat.
As Kenya's response to the pandemic continues, maintaining a focus on preventing infections and ensuring continuity of services for children living with HIV can help mitigate the longer-term impacts of the Covid-19 crisis. But improving quality of life for young people and their families will require shoring up existing efforts to reach not only HIV exposed children but also their mothers and other women in the community who have been put at risk by the pandemic.
It remains critical during Kenya's extended period of pandemic precautions to sustain efforts to identify pregnant or breastfeeding women at risk of HIV and test HIV-exposed children.
Before the pandemic, all women in Kenya had been tested for HIV during antenatal care. Programs, such as Kenya’s mentor mother program, had also been in place to offer support for women who tested positive.
Established in 2012 and scaled up to all of the nation's counties in 2018, this program links pregnant women who have recently tested positive for HIV with HIV-positive women who have had the experience of taking antiretroviral therapy during pregnancy in order to deliver a child who is free of the virus.
Mentor mothers counsel groups of HIV-positive women in person or meet with them one-on-one to help them learn about living with HIV. This program supports both the physical and mental health of recently diagnosed women. But the pandemic has changed and challenged the delivery of counseling and support services.
During Covid-19, pregnant women have been reluctant to engage with the health sector across several countries with high HIV burdens, including Kenya. Early in the pandemic, Kenya prioritized the maintenance of HIV diagnostics and other services for pregnant women. However, recent data from UNICEF indicate that the percentage of women in Kenya who attended antenatal care appointments who were either tested for HIV or already knew they were HIV positive dropped from 89.5 percent in 2019 to 84.6 percent in 2020.
This may be because several countries, including Kenya, have reported a higher number of pregnancies among adolescent girls during the pandemic. According to a November 2020 report, in the county of Homa Bay in western Kenya, one-third of girls between the ages of 15 and 19 had already given birth to one child or had a baby on the way. Being so young means that these girls are at a higher risk of HIV infection as well as death from complications in childbirth.
Clinic closures and lockdowns have made access to contraceptives more difficult, but this high rate of teen pregnancy could also be a consequence of higher rates of gender-based violence during the pandemic. Lockdowns have also left girls alone at home and vulnerable to sexual abuse.
With young mothers less likely to know their HIV status, ensuring that pregnant adolescents seek antenatal care and HIV testing is essential to reducing the likelihood they will transmit HIV to their children.
While the pandemic has forced changes to the mentor mother program and complicated access to healthcare for pregnant women, Kenya’s HIV programs are adapting. Going forward, one key step to improving access to prevention, diagnostic services, and treatment will be bolstering the collection and analysis of data to precisely locate pregnant and breastfeeding women who are at risk of HIV.
Here is one area where Covid-19 can help. New digital platforms have facilitated the rapid collection, dissemination, and analysis of data regarding Covid-19. With sufficient financing and political will, these platforms can be adapted to accelerate the availability of community-level data for the purpose of identifying HIV-exposed children.
Ensuring that pregnant women at risk of HIV are tested and enrolled on antiretroviral therapy is essential to prevent mother-to-child transmission. However, getting HIV-exposed infants tested and, if they are found to be HIV positive, placed on treatment within the first few months after birth can also help protect them at the earliest possible stage.
Kenya has had guidelines in place since 2008 to test all HIV-exposed infants and had updated its policy in 2018 to recommend testing all HIV-exposed infants within two weeks of birth. However, the program had not yet been implemented before the country’s first Covid-19 cases were reported.
Regardless of how soon after birth testing happens, in some communities, it can take weeks for testing results to make their way from the lab to health clinics and then on to families of young children. This can cause delays in starting HIV-positive infants on lifesaving antiretroviral medicine, which can improve their chance of survival. The pandemic has only further delayed and complicated this process.
A new mother and child in the Unilever tea estate clinic in Kenya.
| Photo by Brent Stirton/Getty Images for the GBC
Since the mid-2010s, new diagnostic devices have made it possible to give same-day test results for HIV-exposed infants. These rapid point-of-care tests enable the initiation of a child who has tested positive on an antiretroviral regimen right after diagnosis. In Kenya, HIV-exposed infants tested with the point-of-care devices are more likely to initiate antiretroviral treatment in a timely manner. However, point-of-care test devices are more costly than traditional testing. Also, not all health programs in Kenya have the funds necessary to repair devices that break down.
As elsewhere, pandemic-related disruptions have reduced access to some HIV testing options in Kenya. However, increasing access to and reducing costs of point-of-care tools for early infant diagnosis still need to be prioritized because delays in the receipt of lab results or of initiation on treatment can cost children their lives.
Testing infants and young people and starting those who need it on treatment as soon as possible saves lives. And Kenya has made good progress in this area, with an estimated 84 percent of children living with HIV on ART in 2020. But ensuring that children stick to the recommended antiretroviral therapy regime has always been a challenge.
Sometimes parents or caregivers choose not to tell children why they are taking drugs each day. Without knowing their status or understanding why the drugs help them, children cannot know how critical it is to take their medicine consistently. Because of this, some children forget to take their medicine regularly or avoid it because they object to the taste, smell, or difficulty of swallowing large tablets.
A 13-year-old girl living with HIV takes her drugs at her grandmother's house in Ndiwa in Homa Bay County.
| SIMON MAINA/AFP via Getty Images
Failing to take medicine on a consistent basis can lead to drug resistance. It also increases the likelihood that a child will have to be switched to a different, more costly, and potentially more powerful regimen with more side effects. But in 2020, a new pediatric formulation of the drug dolutegravir was approved. The strawberry-flavored tablets may help resolve some of the adherence challenges that children living with HIV face, and they can be dissolved in liquid for a daily dose appropriate for children as young as four weeks of age.
Unfortunately, the pandemic has brought new challenges to children and teenagers’ adherence to medication regimens. Some children have had to move in with other relatives who may not know the child is living with HIV. Stigma and discrimination toward people living with HIV remain a powerful deterrent to disclosing one's HIV status for many people in Kenya, as in other countries. However, hiding this information from family members while finding a way to refill prescriptions, continue treatment, and seek needed support in an unfamiliar setting can be difficult, particularly for a young child.
For older children, linking HIV services to schools, where children spend a good deal of time, has helped facilitate access to care outside the home. In Kenya, school nurses connect students who may need HIV testing or counseling with a local health facility. Peer mentors, generally adolescents who themselves have grown up living with HIV, also provide students with advice and share their insights with them. Their work can be vital to overcoming stigma and ensuring adherence to treatment.
During the pandemic, social distancing and other Covid-19 prevention measures have forced some of these group activities to be scaled back or moved online. This has created challenges for youth living with HIV who draw inspiration and confidence from connection with these networks of peers. But adolescent HIV mentors are doing their best to adapt, conducting outreach by mobile phone or gathering in smaller, socially distanced groups. Kenya has seen fewer people initiating antiretroviral therapy or refilling prescriptions, so these peer programs can make a difference in motivating children and families to continue treatment.
To best meet the needs of children living with HIV, it will be important to incorporate the perspectives of children and adolescents who have grown up living with HIV into policy deliberations. Continuing to incentivize the research and development of child-friendly antiretroviral therapy formulations, and ensuring these preparations are affordable and accessible during the pandemic and beyond, will also be vital in ensuring that children living with HIV can lead normal, healthy lives.
During the months following the World Health Organization's declaration that Covid-19 was a global pandemic, travel restrictions and economic disruptions resulted in transportation delays and logistical logjams around the world. Air, shipping, and trucking routes were suspended, ports were closed, and delays in processing customs or export permits had enormous impacts on people living with HIV.
An adolescent girl living with HIV sits socially distanced at a hospital in Homa Bay County in June 2021.
| Photo by Sala Lewis for the CSIS Global Health Policy Center
India is a key source of pharmaceutical products, particularly for countries in East Africa, and supplies a significant proportion of antiretroviral medications used in the region. The Covid-19 lockdowns imposed by the Indian government in the spring of 2020 caused severe backups. Global access to HIV medications, key components of diagnostic devices, and diagnostic tools themselves was significantly disrupted. In Kenya in particular, the stockout of a syrup preparation of an antiretroviral drug for children required switching to a tablet form of the medicine, which must be mixed with food and can be difficult for infants to consume.
While the resumption of transportation in the latter half of 2020 resolved shortages in some areas, Kenya's access to HIV commodities has remained unpredictable. In 2021, a large USAID shipment of antiretrovirals, along with HIV diagnostic kits, was held at the Port of Mombasa. The resolution took several months because of a dispute between the governments of Kenya and the United States over taxes on the donated materials as well as over which agency would distribute them to the nation's 47 counties.
These ongoing challenges point to the importance of maintaining a diverse set of HIV commodity suppliers and building a crisis-proof stockpile of essential commodities.
The Covid-19 pandemic has unraveled progress toward meeting ambitious global goals aimed at dramatically reducing the number of new HIV infections in children and eliminating AIDS as a public health threat by 2030.
While responding to Covid-19 and preparing for future pandemics will remain high-level global health priorities for the foreseeable future, people living with HIV in Kenya cannot afford to have services disrupted like this again.
Several key actions can help ensure continuity of HIV care in public health crises and increase momentum toward reaching international goals related to pediatric HIV:
These measures can help mitigate the longer-term impacts of the Covid-19 crisis on children living with HIV. Together, they can improve quality of life for young people and their families by helping to fill service gaps and sustaining children's access to lifesaving treatment. And these actions can help ensure the lessons learned within the Covid-19 pandemic guide the development of new strategies to improve the lives of children worldwide.
Katherine E. Bliss brings her expertise in the social sciences, Latin American studies, and international relations to her work analyzing U.S. government support for health programs in low- and middle-income countries. She is particularly interested in how political and cultural perspectives shape approaches to such global health challenges as HIV/AIDS; vaccine-preventable diseases; and access to safe drinking water and sanitation. Trained as a historian, Katherine spent the early part of her career teaching at the university level and publishing books and articles on gender relations and public health in twentieth-century Mexico. A Council on Foreign Relations International Affairs Fellowship enabled her to shift her focus to global health policy, placing her at the U.S. Department of State, where she worked on environmental health issues and the development of foreign policy approaches to pandemic preparedness.
At CSIS, Katherine has previously served as deputy director and senior fellow within both the Americas Program and Global Health Policy Center, where she oversaw a multi-program project on the influence of the BRICS countries on the global health agenda and directed the Project on Global Water Policy. Her recent work has examined the health situation in the context of the Venezuelan political crisis and the challenges facing immunization programs within fragile or disordered settings. Katherine received her A.B. in history and literature, magna cum laude, from Harvard College and her Ph.D. in history from the University of Chicago. She completed a David E. Bell Fellowship at the Harvard Center for Population and Development Studies.
Michaela Simoneau is a research associate for global health security with the Global Health Policy Center at CSIS. She previously supported the immunization, polio, and nutrition portfolios. Prior to joining CSIS, she worked on projects concerning antimicrobial stewardship, conflict resolution, human rights, and maternal and child health in Coimbatore, India. Ms. Simoneau holds a BS in biology and international studies from Boston College, where she completed her thesis on the Rohingya refugee crisis.
The CSIS Global Health Policy Center is grateful to the government of Homa Bay County for permission to film in and around the Homa Bay region. We thank Sala Lewis for directing the shoot and capturing video footage and still photographs in Homa Bay, with the support of videographers Bramwell Muasya and Jeffrey Kahinju and permitting support from AJ Musira and Irene Magu. Thaddaeus Jullu Jullu and Terri Wanjiku provided invaluable help in the translation, transcription, and captioning of the video content. We are grateful to the Kenya office of the Elizabeth Glaser Pediatric AIDS Foundation, especially Eric Kilongi, Robert Okari, Job Akuno, Michael Audo, Jacob Bulimo Khaoya, and Daniel Mumelo for their assistance and advice in arranging interviews and access to health facilities, as well as Florence Helida and Maureen Ojwang’ who provided essential translation services. Many thanks to Herine Atieno Oyugi, Janet Akinyi Odhoch, Janet Atieno Okore, Beryne Achieng Owuor, Juliet Achieng Gor, Robert John Ouko, Rose Akoth, Sheldon Omondi, Beatrice Adoyo, Magdalene Ongas, and others for generously sharing their time and their stories for this project. Thanks also to CSIS interns Adrian Winchester and Maclane Speer for background research support.
This project was made possible through the generous support of ViiV Healthcare.
A product of the Andreas C. Dracopoulos iDeas Lab, the in-house digital, multimedia, and design agency at the Center for Strategic and International Studies.