WHO WE ARE
The Cost of Inaction
Launched by the FXB Center in August 2008, this landmark initiative explores the “cost of inaction” of a failure to respond appropriately to children. With Professors Amartya Sen and Sudhir Anand directing the project, economists and public health researchers address the complex challenges of enumerating and quantifying the multiple social and economic costs that follow when societies fail to address the pressing needs of their most vulnerable members, viz. children. This project responds to hitherto unaddressed questions in public health: what are the costs of inaction, and is the cost of inaction greater than the cost of action?
Inaction can lead to negative consequences for individuals, families, the community, the economy, and society as a whole. These negative impacts can be financial or economic, but more generally will also include health impacts, education impacts, social impacts, and consequences for labor-force functioning. We aim to identify, quantify, and measure the costs of inaction. Some impacts are quantifiable in monetary terms and others in metrics that relate to the area of the impact (e.g. mortality or morbidity increase, school enrollment, decline in the health workforce, etc.). There will be some, especially social, impacts that are identifiable only in qualitative terms – e.g. the implications of increase in drug use, violence, crime, other anti-social behaviors, and prostitution.
The first phase of the Cost of Inaction project focused on developing and applying a methodology to consider the consequences and costs that arise from a failure to respond to the needs of children affected (or infected) by HIV/AIDS. To this end the project team has developed a conceptual framework and has begun to undertake detailed country case studies.
The conceptual framework is critical to the project. It is necessary to be clear on what exactly is meant by the “cost of inaction” and how alternative meanings shape the implementation of such a study. The conceptual framework highlights the need to identify and justify the actions against which inaction is to be evaluated.
Case studies are necessary to illustrate the choice of counterfactual actions which may be more or less desirable. Different counterfactual actions will give rise to different costs of inaction, and to different direct benefits of action. Given the initial focus on children affected by HIV/AIDS, case-study countries were selected from the region with the highest HIV prevalence, viz. eastern and southern Africa. The selected countries differ not only in HIV prevalence but also in availability of and access to resources for investment. This is important because the actions that are identified as desirable in one context may not be desirable in another. Initial visits have been undertaken to four countries – South Africa, Rwanda, Tanzania, and Angola. Data collection visits have been undertaken in Rwanda and Angola. In-country meetings with government officials, international non-governmental organizations (NGOs), and local non-profit organizations have helped identify candidate actions against which the cost of inaction can be assessed. Special attention has been given to developing distinct research plans for the two countries because they have differing political, geographical, cultural and religious structures which present different challenges for implementation and delivery. For the case-study countries, the team is identifying unimplemented actions which the evidence suggests may be desirable. It is against these actions that the costs of inaction will be assessed – and compared to the costs as well as the direct benefits of action.
Joint Learning Initiative on Children and HIV/AIDS
The Joint Learning Initiative on Children and HIV/AIDS (JLICA) was an interdisciplinary two-year initiative, launched in 2006, that engaged a network of policy-makers, practitioners, community leaders, activists, researchers, and people living with HIV, in research to refocus global responses to the needs of HIV-affected children, their families and communities. Learning groups (LGs) focused on four themes: strengthening family (LG1), community action (LG2), expanding access to services and protecting human rights (LG3), and social and economic policies (LG4). The FXB Center worked collaboratively with FXB International as Secretariat to the Initiative. The FXB Center also sponsored and co-directed the projects and related fieldwork of Learning Group 3.
The final report “Home Truths: Facing the Facts on Children, AIDS, and Poverty, contains a comprehensive set of recommendations to reorient and improve services for the millions of families and children affected by HIV. Among the report’s key findings:
- Much of the current AIDS response overlooks fundamental realities of the daily lives and the impact of HIV on children and their families
- Families and communities provide the vast majority of care for HIV-affected children, with little or no support
- Extreme poverty in many of the most seriously affected regions is a critical barrier to the uptake of HIV programs and services
- Current program design and implementation means external funding frequently fails to reach local communities
- The underlying vulnerabilities that increase the impact of HIV/AIDS on women and girls are not being addressed sufficiently
- Targeting relief efforts to “AIDS orphans” is ineffective and may be counterproductive
The Learning Collaborative on Child Health in Rwanda
In 2007 the FXB Center, in collaboration with the Rwandan Ministry of Health (MOH), launched a Learning Collaborative (LC) to promote the rapid dissemination and implementation of effective strategies for community-based PMTCT service delivery, and to increase the number of women receiving comprehensive prevention of mother-to-child transmission of HIV (PMTCT) services at 17 health centers in the Eastern Province of Rwanda. The LC was part of the Joint Learning Initiative on Children and HIV/AIDS (JLICA)’s Learning Group 3, focused on expanding access to services and protecting human rights. The LC model is based on the Institute for Healthcare Improvement’s “Breakthrough Series” and the Series’ “Plan-Do-Study-Act” cycles (PDSAs), in which problems are identified, solutions tested, results analyzed, and improvements incorporated into standard working procedures.
During four learning sessions, health center participants examined proven and recommended strategies for improving care for children affected by HIV/AIDS, developed plans for incorporating such strategies within their organizations, shared outcomes with health center staff, outlined policy implications for national PMTCT service delivery, and prepared for scale up of successful interventions. Between sessions, members tested changes within the current system and shared learning across teams in order to increase successful strategy implementation. Health center staff trained in the PDSA methodology; small teams visited each health center monthly to assist with PDSAs and other improvements toward meeting collaborative objectives.
Successful interventions addressed 1) early childhood development (ECD) as essential in comprehensive PMTCT care, and 2) persistent loss to follow-up of women after initial antenatal visit, which prevented appropriate PMTCT care from starting at 28 weeks of pregnancy. An ECD tool was designed using the WHO Integrated Management for Childhood Illness (IMCI) module on Care for Development, for use by Community Health Workers (CHWs) during home visits. Nurses at all participating health centers completed an activity-based training module on ECD, then used the module to train CHWs, who monitor for linguistic, social and physical development and counsel mothers on how to play and communicate with children to encourage healthy growth and development. By applying the PDSA approach to loss to follow-up issues, all health centers documented increased numbers of women receiving PMTCT services and antenatal services, and children receiving follow up care, including immunizations and bed nets for malaria prevention. Preliminary results demonstrate that the Breakthrough Series model may be applicable for addressing service delivery problems in low-resource settings. Final results can identify the most effective procedures that may be mainstreamed at a national level, as tools for governments facing similar challenges.
Lesotho Rural Initiative
The Lesotho Rural Initiative has enjoyed a collaborative partnership with the FXB Center, Partners In Health (PIH) and Brigham and Women’s Hospital to strengthen the health care system in southern Africa by providing quality care to address issues of HIV/AIDS, multi-drug-resistant tuberculosis (MDR-TB) and hunger for thousands in Lesotho, a country with one of the highest prevalence rates of HIV/AIDS and MDR-TB in the world. By 2009, the Initiative had opened seven new clinics to provide comprehensive health services in four rural districts, with two additional clinics in the planning stage by 2009. In its first two years at the Lebakeng clinic alone, the project tested more than 12,000 men, women, and children for HIV and started anti-retroviral (ARV) treatment for more than 1,900 patients, and diagnosed over 700 with TB. The clinics have trained more than 750 village health workers for these rural clinics and provided dozens of new nurses and a full time physician in each.
The Initiative includes a focus on children at risk. Lesotho has the highest per capita orphan rate in the world, with an estimated 25% of the country’s children having lost one or both parents to HIV. The Initiative is one of the leading implementers of the Mountain Orphans and Vulnerable Children Empowerment (MOVE) project. Each rural site also provides a comprehensive PMTCT (prevention of mother-to-child transmission) program, and clinic days for children under age 5 that include vaccinations, weight monitoring, and nutritional information. The Initiative has also responded to a recent dramatic increase in childhood malnutrition. Clinic staff who once saw a few malnourished children a week (usually with pellagra, caused by lack of niacin (vitamin B3) and protein), saw many more after a severe regional drought, with manifestations of both kwashiorkor (malnutrition caused by inadequate protein intake) and marasmus (a severe form of malnutrition caused by inadequate intake of both protein and calories). Staff have responded by initiating food programs, identifying food sources, and training village health workers to assess childhood growth.
The Lesotho team launched the country’s first community-based treatment program for multi-drug resistant tuberculosis (MDR-TB). Based at Botsabelo MDR-TB Hospital in Maseru, with funding from the Open Society Institute, and in partnership with the Lesotho Ministry of Health, the project is one of the most ambitious MDR-TB programs in any high-HIV-prevalence community. At Maseru, the team renovated the TB clinic to improve infection control, and PIH supported renovation of the TB laboratory, adding a new pharmacy to effectively manage daily medication distribution to patients co-infected with MDR-TB and HIV/AIDS, and to treat related side effects. Most MDR-TB treatment takes place at the community level, supported by paid and trained community health workers who make twice-daily home visits
The Lesotho Rural Initiative acts in partnership with the Lesotho Ministry of Health and Social Welfare. More information on the Initiative is available at http://www.pih.org/where/Lesotho/Lesotho.html.
Photo: Angela Duger/FXB
