Governments and policymakers are failing to involve communities in HIV and TB programmes, turning instead to researchers and experts to make key decisions. This issue has triggered debate at the AIDS 2014 conference in Melbourne, Australia (20-25 July) as representatives of some African communities claim they are being locked out of the HIV response.
Joan*, a 38-year-old Kenyan living with HIV, says the days are gone when she would be appointed to sit on health committees at district level in her country. "Most HIV support groups in Kenya have now dispersed because community participation is no longer relevant to the government," she laments.
Joan points out that previously, through support group interactions, new HIV infections would be identified and issues addressed at the District Health Committee meetings. "But now the community is no longer involved, issues affecting people living with HIV are dealt with at a doctor- to-patient level," she says.
But Dr Syed Jamal Shah, health coordinator with the International Federation of Red Cross and Red Crescent Societies, maintains that community involvement in health development matters is imperative.
He argues that in order provide dignity in healthcare, especially in the HIV response, vulnerable communities must be identified and fully engaged in health matters, asking: "How would experts and researchers know what is happening on the ground if the communities are not involved?"
Speaking during the AIDS Conference, Dr Shah noted that the strongest advocacy comes from community organisations because of their daily personal interactions at a community level. "What researchers can do in months, using a lot of money, would take communities only hours and at a small expense," he says. "The health response is better understood by the community because these are issues they come face to face with on a daily basis."
Dr Shah reiterates that a community's voice is loud and more authoritative compared to an individual's voice. "In the face of adversity, such as discrimination or victimization, a community can come together to address the central authority."
Strong coalition essential
Dianna Kendi, a 26-year-old sex worker, says that unless communities are fully involved in the fight against AIDS, the public may miss out on valuable information. "New developments in the HIV sector are disseminated to the public through the community; if the community is locked out, the illiterate population who can't read research findings are also left out," she says.
According to the recent World Health Organization's (WHO) post-2015 global tuberculosis strategy framework, a strong coalition with civil society organisations and communities is essential and the presence of the community in health decision-making must not be overlooked.
Annabel Baddeley, TB/HIV and community engagement technical officer for WHO, states that it is very difficult to address any pandemic without involving the community. "Governments should ensure there is enforcement of anti-discrimination rights to give the community a platform to participate in health matters without embarrassment," she says. The community, Annabel adds, should understand their legal health rights and speak out if they are violated in any way.
But Rachael Kedisatetse, the deputy chair of the Civil Society Forum of the Northern Cape (South Africa), feels communities are to blame for being left out of the response. She observes that some communities are power-hungry and consequently form several small groups to earn funding. This, she says, may confuse governments in the allocation of funds.
"As a person representing disabled people living with HIV, I expect blind people, deaf people and those with physical disabilities to cluster and form one group," she says. "This will make the distribution of resources even and ensure that every community understands its role."
If community involvement in HIV and TB programmes is to be effective, it is crucial for communities to fully understand their roles and embrace them to support the government and policymakers. As Dr Shah says, communities are the backbone of the response to HIV and their roles need to be clearly redefined.
*Not her real name