Tuberculosis (TB) rarely comes up in international headlines on health stories, although it still affects around 8.8 million people and takes around 1.4 million lives annually – roughly one person every 25 seconds. And according to World Health Organization experts, 9 million people from Muslim-majority countries will become infected with TB between now and 2015. Today, TB-Manifesto, an advocacy group organised by young women in Saudi Arabia, is showing how much can be done to combat this disease by connecting organisations and individuals across cultures and engaging spiritual leaders.
The battle to eliminate the disease has conventionally been top-down, with many governments focusing on medical treatment, but paying less attention to finding new, optimal ways to reach those who are most affected by it. But today, community groups and patients have been stepping up to show how much can be done at the grassroots level and this is where TB-Manifesto aims to play a pivotal role.
Recently, TB-Manifesto organised the first independent forum on TB inside Saudi Arabia. On a global scale, Saudi Arabia is noteworthy in that it is the leading Gulf contributor to the Global Fund to Fight AIDS, TB and Malaria. The forum explored what can be done in the country at a community level, especially the role that cross-cultural interaction and faith actors can have in dispelling misconceptions and raising awareness about the disease. At the forum, 12 dedicated local and global TB advocates and experts, including women and children from India and the UK who had survived the disease, shared powerful insights.
These interactions gave birth to a space where everyone felt empowered to listen to each other, while cultivating an aspiration to learn and collaborate to find concrete solutions in the fight against TB.
One issue that came up frequently was the stigma attached to the disease. Dr Francis Xavier, who previously worked in the Revised National TB Control Programme in India, added to the discussion by talking about misconceptions about the disease. Before the causes of disease in general were widely misunderstood, many people believed that disease was a punishment from God. Previously, TB – a respiratory infection that can be transmitted through the air – was often fatal, which meant some did not see treatment as worthwhile. This misperception has lingered, even after the development of modern treatment – which has led to self-stigma and patients being reluctant to speak about the disease, making it more difficult for them to seek timely treatment.
Sama, TB-Manifesto’s co-founder, shared her experience with stigma: “People began to avoid me even when I was cured . . . and asked why God gave me a disease when I am such a good person”, she noted. But at the forum, “listening to these similar experiences from diverse voices” gave her perspective about her own experience healing from the disease, she said.
By creating connections across cultures, individual patients and survivors realised they were not alone and could support each other in seeking treatment. Programmes like these, in which patients share their stories with each other and develop individual or organisational initiatives inspired by their own experiences, can be replicated in other communities.
The importance of faith principles also came up as an instrumental ingredient in overcoming the stigma surrounding the disease. Today, faith leaders are actively engaged in this area as respected voices with significant influence in their communities. For example, in a remote province in Philippines, Catholic Relief Services engaged over 135 Muslim leaders to campaign for TB prevention in their mosques before leading prayer.
In Saudi Arabia, TB-Manifesto has adapted this model to bring faith into the conversation by working with doctors, former patients and spiritual leaders in addressing the stigma around the disease with patients as they pursue treatment.
In addition, there are women in Saudi Arabia who act as spiritual leaders in their local communities by leading small discussion groups for women, or providing counseling. In the future, TB-Manifesto hopes to engage these women in raising awareness among women about the disease and treatment.
In the fight for public health at a global and national level, grassroots efforts like these have an important role to play. By listening to stories, engaging individuals from diverse cultures and understanding the positive role that faith can play in healing, we can move forward collectively to meet pressing global health challenges.