Civil society mobilization against TB a top priority

By, Evelyn Harvey, HDN Key Correspondent, UK, November 2, 2006

New OSI country reports highlight failure to fully engage communities

Ask ten people what they think TB-related advocacy and social mobilization means and you're likely to receive as many different answers. According to Paul Sommerfeld, who leads the Stop TB Partnership's Advocacy, Communication and Social Mobilization Working Group, it embraces three main areas: Demand for effective public health policy and resource allocation at a national level; engaging the media and civil society and to disseminate knowledge and awareness of TB; and empowering communities to take an active role in TB control and hold national TB programmes to account.

This long-neglected area is in the spotlight at the World Conference on Lung Health that opened in Paris yesterday. Five comprehensive national reports titled 'Civil society perspectives on TB control', were launched by Public Health Watch (PHW), a division of the Open Society Institute (OSI). The reports provide a strong and detailed argument for an expanded role for civil society in TB control, and emphasize the urgent need to mobilise civil society worldwide in the face of TB - especially in light of extensively drug-resistant (XDR) TB. They call for public engagement to heighten awareness of TB and mobilize research, prevention efforts, care, and funding.

"The emergence of XDR TB sounds the alarm that the world is facing an urgent health crisis," said OSI Chairman George Soros, in Paris to launch the reports, adding "people and communities have the right to demand more effective action from their governments and from global leaders."

The emergence of XDR may provide a catalyst for action, but it is essential to sustain and scale-up efforts to engage with communities and communicate issues surrounding all forms of TB. The new reports attribute the increasing incidence of TB to insufficient social mobilization: a failure of advocacy for effective public health policy; a failure to communicate with patients and providers; and a failure to engage communities in TB control.

The PHW reports present the conclusions of research in Brazil, Tanzania, Thailand, Nigeria and Bangladesh. For each country, a comprehensive report of government policy, TB control programmes including provision for vulnerable groups, access to treatment, and in-country partnerships is presented. During the course of the 18-month review the researchers monitored TB control programs and held discussions at all levels with all involved partners.

All five reports highlight the plight of communities facing inadequate access to TB treatment, in addition to low awareness of TB and stigmatisation of people with TB.

TB control has long been over-medicalized, according to Ezio Tavora dos Santos Filho, a noted activist and OSI's researcher in Brazil. "Drugs alone cannot solve the problem. Physicians need persuading that the community can be useful, that educating patients is cost-effective in the long term."

"Civil society is not an 'add-on' - it is a critical element in the whole process" argued OSI researcher for Bangladesh Afsan Chaudary. TB, he continued, "needs to be seen as a social problem."

Policy-makers must be made aware of the hidden barriers to treatment. "While TB treatment is free, travel to medical facilities, time off work, purchase of food during hospital visits, and diagnostic services add costs that may limit access for the poor," explained Thai researcher Amara Soonthorndhada.

Issues surrounding TB- and HIV-related stigma and discrimination can be subtle, explained researcher Jamillah Mwanjisi of Tanzania. "There is very limited information about TB - almost nothing - especially at the community level. People automatically think that if you have TB you has also have HIV."

Educating and empowering communities is a proven route to progress, the reports argue. By reducing stigma, raising awareness and engaging local volunteers in case management, social mobilisation can increase case detection and treatment success rates. Yet in many endemic countries, TB patients continue to face ignorance, stigma, and exclusion, leading to low rates of treatment compliance.

An 'unhealthy silence' prevails in Nigeria, according to Olayide Akanni.
Civil society partnerships need support and resources to break the silence, as has happened in the AIDS arena.

The HIV epidemic has contributed to a resurgence of TB in many parts of the world. TB is already a leading cause of death for people with HIV, and now XDR-TB brings an additional risk for HIV positive people. It is possible to cure most TB cases with six months of drug treatment, but TB/HIV co-infection and drug resistance complicate and may delay diagnosis and lead to treatment failure.

The ongoing PHW TB-monitoring programmes in these five countries stand alone as an evidence base for effective civil society engagement against the disease. But how applicable are these conclusions and methodologies in other countries and contexts? PHW intends to expand the five-country study to include a further five countries next year, and will help launch the current reports in their respective countries in the coming months.

"These are just the reports, and not mission accomplished," added Soros, "The findings now need to be the basis of future TB advocacy in these countries and elsewhere."

Source: A posting from Stop-TB (stop-tb@eforums.healthdev.org

Unique partnership forged to fight TB in Kenya

By, Henry Neondo, HDN Key Correspondent, Kenya, 2006

A unique partnership bringing together health organisations, an advertising agency, Olgivy and Mather, and affected individuals has been forged to counter the re-emergence of tuberculosis (TB) in Kenya. Breaking with the norm, the partnership now targets spouses of TB sufferers in the home.

The Kenya National Leprosy and Tuberculosis Programme (NLTP), a government agency in charge of running TB programmes, says that this unique partnership aims to achieve three ends: ensure that patients with TB present themselves to health facilities as early as possible; diagnose or refer suspected patients; and help families manage those infected in their own homes.

According to Josephine, 48, and a nurse in Western Kenya, this is a healthy deviation from the norm. "Previous attempts have been on fighting fear among front-line health staff and [tackling] stigmatisation TB patients used to suffer at the hands of the staff and hospital management," she says.

She adds that thanks to internal campaigns within the health sector, "curtains that used to isolate TB patients from other patients in the hospital wards have fallen down".

In the meantime, a television advertisement aimed at encouraging TB patients to visit hospitals and seek treatment has seen the number of detected cases soar.

According to experts at NLTP the TB ‘ina tiba’ advert (literally meaning that TB is treatable in local Kiswahili language), has helped minimise stigma affecting TB sufferers and has seen an increasing number of them seeking not only check-ups and treatment but an improvement in adherence to treatment as well, a key component in the effective treatment of TB.

According to Dr Juma A Aluoch, a consultant and medical lecturer at the University of Nairobi, since the emergence of clear correlation between HIV and TB, there has been an increase in cases of dual stigma for both TB and HIV sufferers.

Dr J M Chakaya head of the NLTP agrees and says that many suspected TB patients are reluctant to present themselves for TB screening because they fear that they will be labelled as having AIDS if found with TB.

Participants at a medical conference at the Nairobi Hospital on the deadly intersection between HIV and TB, say that it is estimated that 50 per cent of HIV infected adults will develop TB in sub-Saharan Africa.

It is hoped that partnerships such as this forged in Kenya will help to dispel stigma for those living with TB and HIV/AIDS and will be an important component in initiatives to provide treatment and care.