By Dr. Mphu Ramatlapeng
CHAI was founded in 2002 with the transformational goal to help save the lives of millions of people living with HIV/AIDS in the developing world. By 2005, when CHAI began working on pediatric HIV/AIDS, children were being left behind at an astonishing rate: only one in 40 children in need was on treatment. Why were kids not identified and on correct forms of treatment? Prohibitively high cost of pediatric medications, difficult dosing procedures, and virtually non-existent systems for testing and linking HIV-positive children to care all contributed to this gap.
In 2005, CHAI stepped up as a leader in the global response to pediatric HIV/AIDS and catalyzed the scale-up of pediatric treatment. With support from UNITAID, the Children’s Investment Fund Foundation (CIFF), ELMA Philanthropies, and the Elton John AIDS Foundation (EJAF), CHAI worked between 2005-2011 to cut the cost of WHO-recommended first-line regimens from US$300 per patient per year to US$102, help bring improved pediatric formulations to the market, increase affordability and accessibility of high-quality early infant diagnosis in dozens of countries, and improve care for HIV-positive children by thousands of healthcare workers via clinical training and mentoring programs. By the end of 2011 when CHAI transitioned its efforts, there were 566,000 children on treatment, seven times more than in 2005 when we began.
In 2014, through a US$10 million grant from ELMA Philanthropies, CHAI revitalized efforts to close the treatment gap among children and has now begun comprehensive pediatric treatment scale-up efforts aimed at improving the survival of all children affected by HIV/AIDS. Our overall mission remains the same: in the short term we want to ensure that all children living with HIV are put on life-saving medication, while preventing new HIV infections among children in order to achieve elimination of pediatric HIV in the long term.
Our efforts align with global targets aiming to have 95 percent of all children living with HIV on treatment by 2018 and to eliminate pediatric AIDS by 2020; however, there is significant work remaining to get there. According to UNAIDS estimates in mid-2016, 910,000 children were on treatment. While this is a vast improvement from 2005 when CHAI began pediatric work, this still only represents approximately 50 percent of children in need, and 110,000 children continue to die each year from AIDS-related causes, while 150,000 contract the disease each year.
So how are we planning to move toward elimination? First, we need to find all children who are exposed to and infected with HIV faster and with better programming, testing, and treatment. With an estimated 1 in 287 children being HIV-positive in Sub-Saharan Africa, testing for children needs to be widely available and carefully targeted. Facility-based testing offers opportunities to find children, especially in critical entry points such as malnutrition, TB, and inpatient wards; however, we have found that children are not routinely being tested for HIV in these critical settings, resulting in missed opportunities to identify children who need to be linked to care. A lack of sufficient staff, poor training and guidance on pediatric and adolescent testing and counseling, weak monitoring and evaluation systems to track pediatric testing and identification, and recurrent test kit stock-outs have prevented the routine testing for children at these points.
CHAI is addressing these challenges through tackling health system level gaps that prevent children from routinely being tested at facilities. This has involved the development of revised pediatric policies, operational plans, healthworker tools and training materials, improved monitoring, and strengthened partner coordination. For example, in Uganda, where healthcare workers had no training or guidance on pediatric HIV testing practices, and facilities largely did not have the right systems in place to ensure presenting children in key entry points were tested, CHAI supported the Ministry of Health to develop the first pediatric HIV testing and counseling strengthening program and a new HIV testing services policy with a heightened emphasis on children. In Zambia, while there were strong guidelines for HIV testing for children, facility-level implementation was poor. CHAI has worked with the Ministry to improve capacity for scaling up HIV testing for all children at facilities by translating the pediatric testing guidelines into facility-level operational guidance and deploying, training, and mentoring counselors to focus on HIV testing among children. We’ve seen positive progress in our priority facilities, where testing in inpatient wards has increased significantly. In Zimbabwe, there were no national structures prioritizing pediatric identification and initiation, much less adequate monitoring, and review mechanisms. CHAI supported the development and costing of a cohesive and comprehensive national pediatric treatment scale up plan which has been instrumental in aligning all national and partner efforts on life-saving testing strategies, activities, and targets for pediatric HIV.
Along with this work to better identify and connect children with high-quality treatment, we need to maintain a focus on elimination to ensure that children born to HIV-positive mothers are healthy and monitored in order to move toward achieving an AIDS-free generation. Currently, only 51 percent of all HIV-exposed infants receive an early infant diagnostics (EID) test at the recommended age, and even fewer receive their results in a timely manner to facilitate treatment initiation or appropriate exposed-infant care follow up. Without treatment, up to 30 percent of HIV-infected infants die by their first birthday, and 50 percent by their second. EID is the gateway to care and treatment for HIV-exposed infants, who cannot be diagnosed using standard rapid diagnostic tests. However, in 2006 EID was virtually non-existent in low-resource settings and children were dying at astonishing rates.
As part of a US$400 million UNITAID-funded grant from 2006-2013, CHAI supported the scale-up of EID in over 40 countries through development of conventional EID systems, in which samples are transported to a central lab and run on high-throughput devices. The work stemming from this grant developed the market for EID and pediatric drugs by by both engaging suppliers and generating demand at the country level. This work helped countries to dramatically scale up EID testing and pediatric drug availability. In CHAI-supported countries, testing figures grew from 80,000 tests in 2006 to over 600,000 tests in 2013. This enormous scale-up in testing – 2.5 million total tests – contributed to more HIV-infected children being identified and linked to treatment. Since CHAI’s pioneering work, EID has been prioritized on the global health agenda and scale-up has occurred around the world.
Bolstered by our long-spanning commitment to eliminating pediatric HIV, particularly for the most vulnerable population, infants, we have continued work closely with our partners to ensure the stable supply of diagnostics and treatment for HIV-exposed and HIV-positive children, including EID commodities. Although countries have made significant progress in identifying and treating HIV-infected infants, critical gaps in EID coverage remain, and systems based entirely on conventional testing will not be sufficient to meet the needs of resource-limited settings and eventually eliminate pediatric HIV/AIDS.
With support from a US$140 million investment from UNITAID to accelerate access to innovative diagnositics, CHAI aims to improve the effectiveness of EID programs by introducing point-of-care technologies and strengthening systems for conventional EID. Point-of-care technologies simplify HIV diagnostics by allowing patients to be tested closer to where they are. They do not require specialized laboratory technicians, can be operated by ordinary health workers in lower-level health facilities, and offer results within 50 to 90 minutes (a process that now takes 3 months in some countries), allowing clinicians to make treatment decisions quickly and patients to receive their results in the same day and start treatment promptly. This technology has shown a significant impact on patient outcomes in countries such as Malawi and Mozambique, leading to registration and scale-up of this life-saving tool. This work will continue in seven countries (Ethiopia, Kenya, Malawi, Mozambique, Tanzania, Uganda, and Zimbabwe) through 2020.
In addition to providing high-quality diagnostics for HIV-exposed infants, mothers who are HIV-positive need to be identified and treated, and to remain in care with their infants through the end of the breastfeeding period in order to get a final HIV status for the infant.
CHAI has supported ministries of health to introduce facility-, national-, and patient-level interventions to keep mothers and infants in care. In Uganda, through a 20-facility pilot, CHAI provided the evidence necessary for the ministry to adopt a national follow-up model for HIV-positive mothers and exposed infants who miss their regularly scheduled visits. In Zimbabwe and Zambia, we have introduced new registers to help facilities track and offer the right care for mothers and infant pairs. CHAI is using mobile technology to improve tracking of lab results, and confirm the initiation of infants on life-saving antiretroviral therapy in Malawi, and in Uganda to provide timely notifications to moms to come to facilities when an infant’s test result is received.
Moving forward, CHAI will continue the important work upon which we were founded. We will partner with governments to nationally scale these strategies to prevent, test, treat, and eliminate pediatric HIV, ensuring that infants and children are adequately prioritized for testing in facilities, and that we’re linking and retaining positive children on life-saving antiretrovirals. Thanks to the generous support of our donors, CHAI is supporting governments in making significant progress but there is still more work to be done. Through more efficient programs we need to continue scaling up efforts to ensure that this generation is free from the burden of HIV and AIDS.
Dr. Mphu Ramatlapeng is the Executive Vice President of HIV/AIDS, TB, and Health Financing at the Clinton Health Access Initiative, Inc.
To learn more about our work in HIV/AIDS, please visit: http://www.clintonhealthaccess.org/program/hiv-aids-tb/