Fighting TB stigma

"When I was told I had TB, I felt ashamed," Dini Kusumawadini, 28, who makes a living growing ornamental plants, told IRIN. "But after undergoing treatment, I wanted to share my experience and motivate people with TB so that they could recover."  

Dini was diagnosed with tuberculosis two years ago. But while undergoing treatment at a community health clinic in the Ciputat area, southwest of Jakarta, she decided to join a support group to help other TB sufferers finish their therapies.
 
After six months of treatment, she was declared cured.

TB is a leading cause of adult deaths in Indonesia but Dini said people in her community had begun to realize it was curable.
 
"In the past, people with TB were ashamed because there were stigmas associated with the disease," she said.  
 
Dini is among 30 former TB sufferers, patients and their relatives who have joined the support group at the clinic in Ciputat, a poor area in Tangerang district.
 
NGOs such as Care Indonesia and the local health officers are facilitating the establishment of such support groups, known locally as paguyuban, to help fight the stigma. They comprise TB patients and their families, health workers, community and religious leaders, and other volunteers.
 
So far, Care has helped to establish 19 support groups in Banten province on Java island. Nationally, such groups fall under the government-sanctioned Association of Patients and Community Care for Tuberculosis (Pamali), with branches across the country.
 
"In Indonesia, there are various stigmas and discrimination associated with TB," said Wiwik Widyastuti, a spokeswoman for Care Indonesia. "Many think that TB is an inherited disease; some think it is a curse and therefore, incurable."
 
The stigma leads to discrimination and isolation of the infected and their families, and a barrier to providing adequate care and preventing further infections in the community, she said.
 
Reducing TB prevalence
 
Indonesia, the world's fourth most populous nation of 230 million people, has the third-highest tuberculosis burden in the world after India and China, according to the World Health Organization (WHO).
 
An estimated 528,000 cases of TB are detected yearly, resulting in 91,000 deaths, according to the Health Ministry.
 
But the ministry said last month that Indonesia's fight against the disease was on track.
 
The prevalence of TB in Indonesia in 2008 was 253 cases per 100,000 people, not far from its Millennium Development Goals target for 2015 of 222 per 100,000 people, it said.
 
Of those undergoing treatment, more than 85 percent are cured, said Iwan M Muljono, the ministry's director for communicable disease control, in a statement marking World TB Day on 24 March.
 
"About 70 percent of TB sufferers are in the productive age bracket and therefore efforts to prevent and eradicate TB are the shared responsibility of the government and members of the public, including the private sector," he said.
 
Battling multidrug-resistant TB
 
Muljono said efforts to fight TB were complicated by the increase in the number of people with HIV/AIDS and with multidrug-resistant TB (MDR-TB), which does not respond to first-line drugs.
 
People with HIV/AIDS are vulnerable to TB owing to their weakened immune system. The health ministry said between 2 and 3 percent of new TB cases were MDR and there were an estimated 6,400 cases of MDR-TB annually.
 
According to the WHO’s Global Tuberculosis Control Report 2009, though the MDR-TB rate is still relatively low, the total number of MDR-TB cases is considerable due to the large numbers of TB patients.
 
"These new challenges should force all parties concerned to move faster and be innovative in strengthening the network of services for TB patients," Muljono said.
 
MDR-TB is generated mainly due to the large numbers of TB patients who are inadequately treated.
 
Members of support groups spread information about TB to their communities and refer TB suspects to the health office for further examination and treatment.
 
In addition, they also act as treatment observers and ensure patients take their medicine.
 
“Our experience shows that peer to peer consultation is very effective, especially if it involves an ex-TB patient. After the ex-patients share their experiences, the group tends to be more open and accepting,” said Rahmat Setiawan, the project manager for MITRA, a Care Indonesia TB project.
 
“To achieve greater impact, we also involve the health officers, the community and religious leaders in the area.”
 
Dini told IRIN: "It's a small thing and I do hope that what I'm doing can make a difference to people’s well-being."   
 
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