Despite great strides made in TB care and control over the last few years, the latest data shows that 1/3 of all TB cases are still either not detected or not reported to public health systems. These are people who either seek treatment in the private sector and are not notified to the National TB programmes (NTPs) or have not been diagnosed at all. Some of them would die and all of them would continue to spread TB to others, unless treated. Communities affected by TB are often marginalized--poor people, migrants, injecting drug users, prisoners, refugees, sex workers—and face challenges in securing TB services from public healthcare facilities. Then there are women and children, for whom also it is not easy to access healthcare.
Thomas Joseph of the World Health Organization (WHO)'s Global Tuberculosis Programme, told Citizen News Service (CNS) that: "We have to find these missing people by reaching out to them as they are not coming to us on their own for a variety of reasons. We have to get them diagnosed and put on treatment. Non-governmental organizations (NGOs) and Civil Society Organizations (CSOs) can do this best as they are already working with these target groups. So it is easy for them to reach out to this missing population of neglected communities through community health workers and volunteers."
"But the tragedy is that, even though many NGOs may be working on HIV, they are not working on TB. We know that a large number of deaths (one in four) in people living with HIV (PLHIV) are due to TB, which is treatable and curable and not because of HIV, which is not curable. If NGOs working with PLHIV can integrate TB care and control in their existing programmes, it will dramatically reduce these unnecessary deaths” said Thomas.
He added: "Another neglected population is that of women. TB affects the health of the mother and the unborn child. In case of pregnant women, TB doubles the risk of low birth weight of infants, which is predictive of a host of other health problems in later life. It also doubles the risk of premature birth, increases 10-fold the risk of fetal death, and doubles the risk of vaginal bleeding. Pregnant women living with HIV have more than 10-fold higher risk of developing active TB than HIV-negative pregnant women. Ignoring TB in women has ghastly results."
Thomas insisted that, as a matter of policy, government programmes should screen all pregnant women for TB symptoms (like night sweats, fever, cough, weight loss). All NGOs working on maternal and child health should integrate TB in their programmes. Likewise they must screen PLHIV for TB symptoms and accordingly refer them for diagnosis. If they have TB, they should be put on TB treatment, and if they test negative for TB, they should be put on TB prevention treatment.
He informed: "The ENGAGE-TB operational guidance from the WHO Global TB Programme, provides guidance to (i) NGOs on how they can integrate TB in their programmes and (ii) National TB programmes (NTPs) on how they can collaborate and work together with NGOs and other CSOs working on community-based TB activities. This collaborative approach is built in an enabling environment based on mutual understanding and respect between NGOs and Governments. Through supportive policies and simple procedures, it aims that NGOs/ CSOs provide a broad range of TB services."
A few examples of successful application of this model were shared at the recently held 45th Union World Conference on Lung Health in Barcelona:-
Despite a gradual decline of approximately 2% annually, TB has remained a major public health challenge in Kenya. About 21% of all estimated new TB cases are still unreached and hence undiagnosed. Kenya also has a high dual TB-HIV burden. The ENGAGE-TB approach was launched in Kenya in 2012. The initiative aimed to enhance collaboration between CSOs and the government for purpose of better TB control and services at the community level. Before this, due to lack of a clear mechanism of their engagement, most NGOs/CSOs remained unengaged in TB control activities. The national NGO Coordination Body was formed in May 2012 and a steering was team was established representing both urban and rural CSOs.
Role of CSOs in community-based TB includes early case finding and facilitating referrals for diagnosis and treatment of TB; prevention of treatment interruptions & retrieval of those who interrupt; socioeconomic support and home based care activities related to TB care; advocacy on reduction of stigma; and social mobilization.
Key achievements of this initiative (2012-2014) were:
(i) Development of operational guidelines for CSO Engagement in TB Control
(ii) Launch and dissemination of Operational guidelines for CSO engagement in TB control
(iii) Identification of CSOs that would engage on Community TB/HIV Control
(iv) Development of CSO code of conduct
Population Services International (PSI) has integrated TB in most of their HIV programmes in high burden TB countries using private-public model in TB care by partnering with NTPs. In Myanmar and Kenya, PSI has also integrated TB services with family planning and maternal and child health services to reach out to women who may not be seeking care for TB symptoms.
Sun Quality Health (SQH), a social franchise network of PSI, working in urban areas of Myanmar, has included TB screening, diagnosis and treatment in its activities. Sun Primary Health (SPH), works in rural areas of Myanmar through a network of community workers that provide TB services, along with other healthcare services for malaria, pediatric pneumonia, diarrhoea and family planning. The main functions of SPH community health workers are community sensitization and case finding; referral- mainly to SQH clinics and other public health sectors; DOTS support; contact tracing and sputum collection; and follow-up on treatment-interrupted cases.
Ethiopia, a high TB/HIV burden country has also shown positive results for reaching the unreached through new CSO initiatives integrating community-based TB activities. For creating common consensus a high level discussion was held between WHO, Ministry of Health (MoH), NGOs and CSOs and integration of TB services was done in three existing projects—(i)HIV and maternal, neonatal and child health (MNCH) – Save the Children; (ii) MNCH and water and sanitation- AMREF; (iii) Cancer screening/HIV- CUAMM.
WHO coordinated and facilitated initiation of projects through capacity building of the NGOs; supporting the establishment of National Coordinating Body; monitoring quality of project implementation; and facilitation of experience sharing among the implementing partners and with NTP.
The ENGAGE-TB approach is now included in the revised National community TB care guidelines of Ethiopia. Engagement of NGO/CSOs has been included in the newly revised Strategic Plan for TB. The two core WHO-recommended indicators have been included in the newly revised Health Management Information System.
All these examples show that ‘partnership between Government and NGOs in TB control interventions’ is practical and a critical factor for positive outcomes. However NGOs might need financial support to help integrate TB services into their work, and so increase in resource allocation for community based TB interventions is important.
Commitment from the MoH and local healthcare personnel is essential too. There is need to train CHWs in various health areas, refresh their trainings, develop new tools, and streamline the system so as to reach the grass roots community level. There must also be enough motivation (monetary and otherwise) for CHWs to remain in the programme and not opt out.
Good data collection is critical to demonstrate that community-based TB integration activities have a greater impact than using health centres as point of entry to care and information; and also that multiple services when integrated work better than those working in silos.
Thus, by leveraging existing networks and services, we can reach out to the so-called hidden population at the community level to facilitate early case detection and enhance TB prevention efforts. The strength of NGOs is their reach, spread and ability to engage communities. When NTPs engage NGOs to integrate community-based TB activities into their work, TB outcomes improve, wherein lies the success of the ENGAGE-TB programme.
(The author is the Managing Editor of Citizen News Service - CNS. She is supported by the WHO Global Tuberculosis Programme to report from the 45th Union World Conference on Lung Health in Barcelona, Spain. Email: firstname.lastname@example.org, website: www.citizen-news.org) ;