The World is Failing HIV Positive Kids: What Has Gone Wrong and What We Must Do About It

The latest damning data on pediatric AIDS are in. UNAIDS has just released a report on the status of efforts to eliminate perinatal HIV infection, reach all HIV-exposed infants with rapid diagnosis, and ensure all 1.8 million children living with HIV have access to quality treatment. The report points to nothing short of global failure to protect children from substandard HIV care. 

Science shows us it is possible for children with HIV to live a normal lifespan. But they are being denied that promise. Instead, children account for a disproportionate number of AIDS deaths and people with unsuppressed viral loads. Children with HIV represent 13.7% of AIDS deaths in 2019 but make up only 4.5% of the 38 million people living with HIV worldwide. 

HIV treatment enrollment is still virtually flatlined for children, as it has been for the last decade. Between 2018 and 2019 the number of children on treatment rose from 940,000 to only 950,000. By contrast, adult treatment enrollment increased by 2.2 million people over the same period. Global treatment coverage for children has stalled at about 53% for a decade, while treatment coverage for adults continues to rise, increasing from 63% to 68% globally from 2018- 2019. 

This profound and life threatening inequity in access to treatment is unacceptable and has to be corrected.   

We are seeing the effects of poorly managed COVID-19 restrictions threaten to destabilize the pediatric HIV response even further. Already several countries including Zimbabwe and Uganda are observing declines in pregnant women being able to attend antenatal care, reduced rates of infant HIV testing and families unable to move to clinics to pick up pediatric treatment refills. From preventable deaths of women in labor caused by poorly executed lockdowns, to spikes in teen pregnancy, to waves of violence targeting sex workers, many of whom are living with HIV and have HIV positive children, the burden exacted on HIV positive mothers and children by COVID-19 is terrible, and must be eased. 

New models estimate that a six-month disruption in HIV treatment services for pregnant women could result in as much as an 83% increase in perinatal infections in Mozambique, a 106% increase in Zimbabwe, a 139% increase in Uganda and a 162% increase in Malawi.  

In December 2019, Health GAP launched the Kigali Declaration, along with GNP+, Aidsfonds, Réseau Grandir Ensemble, HEPS Uganda, Lean on Me Foundation, Coalition PLUS, Sidaction, STOPAIDS, ITPC and supported by hundreds of other activist organizations from around the world. Our rallying cry was simple: “Wake Up! Our Children are Dying!” Activists raised the alarm during the ICASA in Kigali, Rwanda and again during the 45th UNAIDS PCB in Geneva which focused on the theme of the epidemic of HIV among young people.  

Since the launch of the Kigali Declaration, there have been virtually no improvements in outcomes for children, despite pledges to prioritize pediatric treatment access by the Global Fund, PEPFAR and UNAIDS. 

For example, the most recent quarterly program data from program implementers funded by PEPFAR point to missed targets for expanding point-of-care early infant diagnosis (POC EID) in many countries, despite commitments to people living with HIV by PEPFAR to scale up this critical platform. The evidence shows POC EID gets life-saving results: compared to conventional EID, POC testing dramatically increases the number of infants starting treatment immediately after diagnosis. 

Of course, flatlined treatment initiation for kids is caused by several factors, ranging from lack of political will to support quality timely options for children to health workers who feel they lack confidence and training to start children on treatment. But make no mistake, inexcusable delays in parents and caregivers receiving a positive HIV diagnosis is driving deadly obstructions in pediatric treatment scale up. In Uganda, PEPFAR has reported that its target, already considered insufficient by activists, of 20% EID tests being done at point-of-care is not being reached. PEPFAR pledged to Kenyan activists in March 2020 that life-saving POC EID that had stalled due to lack of funding support  would be restarted in the Kenya 2020 Country Operational Plan to cover the gaps in paediatric access in the country, but up to now PEPFAR’s promise has not been outlined  in COP20—yet.    

Intensified POC EID must accompany bolder efforts to block HIV transmission during breastfeeding, through later access to infant testing access as well as access to PrEP for HIV negative pregnant and breastfeeding women and quality treatment programs that support women to ensure retention in care with suppressed viral load for the sake of  their health and the health of their families. 

Poor quality treatment services for women with HIV and other caregivers of HIV positive children receive are also fueling this crisis. Evidence shows when women and their newborns receive supportive services, including adherence support provided by trained, equipped HIV positive “mentor mothers” who are paid a living wage for their work, they and their children are more likely to be retained in care with good clinical outcomes. Without these services, women and their children are extremely likely to fall out of care rapidly, due to health systems that are not accountable to their needs. 

Finally, AIDS austerity has also fueled this preventable crisis. Years of PEPFAR flat funding have generated pediatric treatment budgets that skimp on essential, evidence based treatment and prevention services—cutting short term costs that result in massive, tragic waste in the form of preventable infections, suffering and death.    

If the evidence is so clear, why aren’t PEPFAR and Global Fund-funded pediatric programs requiring and tracking progress of these lifesaving components as minimum requirements for pediatric HIV programs? The second class treatment that children with HIV are subjected to is nothing short of discrimination—and it must stop. Here is our crisis response checklist for communities in light of the latest evidence: 

1. Government implemented COVID-19 restrictions must exempt pregnant women and children with HIV and all other people who need essential health and social services such as antenatal care; HIV and TB services for children and adults; access to PrEP; adult and pediatric HIV testing; and support to prevent and respond to intimate partner violence. People with HIV and their families, pregnant women and others must be allowed to move and get services as a non-negotiable component of an effective and responsive COVID-19 strategy. If governments cannot accept this, then civil society should reject lockdowns, as happened in Malawi—they would otherwise pose too great a risk to life, health and wellbeing. 
2. Multi-month prescriptions for pregnant women, children and families must be permitted urgently. Countries must shift policy and immediately roll out longer dispensing to allow mothers to access medication covering a longer time period than is currently allocated to ensure that mothers and children who due to COVID-19 are no longer close to the facilities have access to an adequate amount of life-saving treatment for themselves and their children.  
3. All children born exposed to HIV must have immediate access to POC EID. Conventional HIV testing for newborns is substandard and defies WHO’s scientific recommendation that all people should have access to diagnostic test results within four weeks of life.
4. Pregnant and breastfeeding women at risk of HIV infection require access to PrEP and other high impact prevention measures, as well as HIV testing during pregnancy. This is particularly critical given the increased risk of acquisition of HIV during pregnancy. Donors and governments should also implement multi-month prescribing of PrEP to increase adherence.
5. Treatment scale up for children with HIV must be prioritized to stop the needless deaths. They need powerful treatment regimens that can deliver viral load suppression despite high rates of background drug resistance. Given available regimens, for now this means raltegravir granules-based regimens for neonates’ rapid introduction of improved regimens for children <20kg such as dispersible dolutegravir or abacavir+3TC+lopinavir/ritonavir granules; and dolutegravir based regiments for children over 20kg.
6. Children with HIV and their caregivers need HIV programs that guarantee all HIV positive children are provided community-based service delivery interventions that ensure caregivers can successfully administer paediatric treatment, such as supportive caregiver training, counselling and comprehensive loss to follow up prevention.
7. Mylan, ViiV, Cipla and Gilead must deliver affordable prices for pediatric treatment, and a robust R&D plan for improved child-friendly treatment formulations. Procurement and supply chain strategies must shift rapidly to address shortages and stock outs caused by already insufficient supply alongside global shortages of pediatric formulations that have only been intensified by COVID-19. 
8. Demand funding increases for PEPFAR and the Global Fund to Fight AIDS, Tuberculosis and Malaria to mitigate against the harm COVID-19 is doing to pediatric HIV programs. Call lawmakers in the U.S. today and demand their leadership in the name of HIV positive children and their families: no less than 1.2 billion in additional funding for PEPFAR in FY21, and $4 billion over FY21-22 for the Global Fund.    

The most recent evidence presented in the UNAIDS report is hopefully our final wake up call. The world is failing children with HIV. At Health GAP, we are intensifying our efforts with other national and global activists who are on the frontlines of the fight to stop the needless suffering and deaths of children with HIV. Will you join us in taking action? Lives depend on it.

Notes:

1. Bianchi F, Cohn J, Sacks E, Bailey R, Lemaire JF, Machekano R et al. Evaluation of a routine point-of-care intervention for early infant diagnosis of HIV: an observational study in eight African countries. Lancet HIV. 2019;6:e373–81.