Programmes begin to nurture much needed TB/HIV advocacy

Community engagement and grass-roots level activism and demand for TB/HIV services can be developed with a little encouragement, according to presentations at the HIV Implementers’ Meeting held this past June in Kampala, Uganda.

HIV treatment activism, treatment literacy and community participation has been critical for the scale up of HIV treatment and care programmes in resource-limited settings. However, grass roots level advocacy around TB or TB/HIV has been much slower to develop.

Thembi Nkambule, who serves as a national coordinator of Swaziland National Network of People Living with HIV and who has herself been treated for TB suggested several reasons for this:

“There is low awareness about HIV and about TB/HIV co-infection — even though most of our members, as people living with HIV, are dying of TB — we never took it seriously. And people don’t want to be diagnosed with two diseases because of stigma that is associated with both diseases,” she said.

She added that because “TB is curable, people with TB would disappear [after it is cured] and not participate in HIV-related activities, while people who were actually HIV-infected often do not want to participate in TB-related activities.”

Perhaps, also, TB and HIV programmes have not yet applied sufficient resources to developing TB/HIV advocates. But where they have, there is ample evidence that, when it is nurtured, a community response to TB/HIV can flourish and even assist in the delivery of TB/HIV services.

The Women Together support group takes on TB

For example, in Swaziland, the University Research Co, together with PEPFAR, the National TB Control Programme and Ministry of Health and Social Welfare have partnered with one HIV community organisation, Women Together (WT) to link people with TB/HIV to treatment and care (Haumba). WT members reported that they had had difficulty accessing TB prevention, treatment and care — and had often suffered discrimination

So URC conducted a cross-sectional study of 45 members of WT, exploring women-specific problems affecting access and adherence to TB care. They found that there were high rates of current or previous TB coinfection among these HIV-infected women: 40 ((88%) were either currently or previously on TB treatment.

Despite the fact that many had received care for the illness, there was shockingly low knowledge about TB and its causes. Most (17) said that TB was contracted from “other people” but only one said that it was caused by a germ. The remainder thought TB was caused by witchcraft (the second leading cause), HIV, dust/smoking, alcohol or pneumonia, while several said they simply didn’t know. And a high number reported that they hadn’t sought care for the condition because they didn’t know the signs or symptoms of TB, were afraid of the stigma or they didn’t know where to go.

Clearly, the TB and HIV programmes had been failing to provide even the most basic information and education to people in the country with one of the worst TB/HIV problems in the world. The annual TB incidence of 1084 per 100,000, the national HIV seroprevalence is 26% and 79.6% of people with TB are HIV-coinfected.

So a 3-day training programme was launched which has trained 27 members of the support group about TB and the interaction between HIV and TB, as well as how to assist in community based directly observed therapy (DOTS) for TB treatment.

The group is now performing DOTS and engaging in community sensitization and social mobilisation. Some members are now disclosing their HIV and TB status in public forums. The group is also engaged in developing the national TB communication strategy, programme design and evidence-based IEC materials.

“In Swaziland, the national network of people living with HIV has developed a community training manual on TB & HIV co-infection and associated stigma and discrimination that is now used as the national tool for training on TB/HIV & the stigma associated with it,” said Ms Nkambule.

Efforts in Côte d’Ivoire, Nigeria, Uganda and Botswana

Other community-based efforts are underway in several other countries in sub-Saharan Africa.

For instance, in Botswana, the Youth Health Organization (YOHO) has been mobilized to provide Entertainment, Education and Empowerment (called Triple-E) to sensitise young community members about TB/ HIV. Using a combination of theatre and workshops, YOHO has put on 11 performances, reaching close to 9,000 people — leading to increased knowledge about coinfection.

In Côte d’Ivoire, Reseau Ivorien des Organisations de Personnes Vivant avec le VIH (RIP+), a national umbrella network of PWHA organisations, has worked with Mbade Victoire, the first Ivorian TB/HIV co-infected patients association to implement patient-centred palliative care services, working out of TB centres. Mbade Victoire provides counselling and support to people with TB/HIV, and also refers people who are counselled for HIV testing for TB screening too — leading to over 3,300 cases of TB diagnosed in Abidjan.

In Nigeria, the Treatment Action Movement (TAM) has organised TB/HIV treatment literacy advocacy workshops for treatment advocates and support groups, and they conducted seminars on TB and HIV for service providers at ARV and DOTS centres. This has resulted in increased awareness and a demand for TB/HIV coordinated services, greater government support for TB/HIV collaborative programmes and greater awareness about TB overall. Finally, it led civil society to establish Nigeria’s STOP TB partnership.

In Uganda, the Coalition for Health Promotion and Social Development (HEPS-Uganda) in consultation with the Ministry of Health, WHO and partners, has monitored the availability of HIV and TB medicines and diagnostics. Their research found that there is a critical shortage of paediatric formulations of medication, public health facilities don’t receive medicines in time and have stock-outs — and that antiretrovirals being distributed past their shelf-life date.

Another benefit of empowering the community is that it can promote similar activism among healthcare workers — who also need to be concerned about their risks from TB/HIV coinfection.

“One of the things we have noticed — as activists, as we get more knowledge on such issues — it becomes easier for us to engage health workers at a personal level,” said Ms Nkambule. “Even outside the formal kind of meetings on a personal basis. So as activists are empowered, they also need to empower health workers to be in a position to deal with such issues.”

Partnering with the community critical to collaborative activities

Many other reports cited the critical role that the community is beginning to play in the delivery of HIV/TB collaborative services. Of note, Ms Nkambule’s talk opened the conference’s session on TB/HIV integration — a clear sign of the importance that PEPFAR and other partners are giving the fledgling TB/HIV movement.

“Awareness-raising is effective if driven and owned by grassroots communities and leaders; peer counselling by TB/HIV co-infected patients is a valuable approach to fighting stigma, and civil society needs to be actively involved in promoting TB/HIV activities and programmes,” Ms Nkambule concluded.