Reshma (name changed) was diagnosed with tuberculosis (TB) during a free health check-up camp held in Satara, about 109 km from Pune. Government doctors asked her husband to start treatment immediately. The man first refused to accept that his wife has been infected. Then he locked her in a room for about a week. When doctors reached his doorsteps, he drove them away.
It was only after some village women showed the courage to question why Reshma was isolated, the man took her to a private hospital for treatment. "TB is a k a l a n k(stigma) and now my entire family will have to face exclusion," he rued. But village women ensured that Reshma was not isolated and discriminated against and got the required treatment. Similarly, in Sangli women forced family members of a TB-affected girl to take her to a hospital.
The World Health Organisation (WHO) is keen on involving and engaging a wide range of stakeholders in combating the proliferation of Tuberculosis (TB), but women in rural Maharashtra have already taken up the reins and have heralded a silent revolution in the health sector with TB treatment getting the priority.
TB affected an estimated 86 lakh people and caused 13 lakh deaths globally in 2012. The casualties include 4 lakh women and 74,000 children. One third of people estimated to have TB are either not reached for diagnosis and treatment by the current health systems or are not being reported. Even in patients who are identified, TB is often diagnosed and treated late, says a WHO report.
A silent revolutionAs the sarpanch of Pokhari in Yavatmal district of Vidarbha, Archana Jatkar headed a revolution that aimed at checking corruption in government schemes. Jatkar ensured that all the funds allocated for treatment of TB reached the needy.
"TB is a curable disease and not a stigma. It can happen to anyone and there is treatment available. There is no need to panic," says Rukmini from Satara, who believes that it is high time women pay attention to their health.
"Women leaders in rural Maharashtra are heralding a silent revolution in the health sector. Though at a slow pace, the intensity of the movement is tremendous," said Mumbai-based Bhim Raskar, who is working with Mahila Rajsatta Andolan, a campaign for women in governance.
"Women members in panchayats have taken up government health schemes under the National Rural Health Mission. Subjects of so-called taboo like TB and HIV are now being discussed in gram sabhas with women taking the initiative. This is definitely going to help the mission against TB," Raskar said.
Jatkar’s is not a one-off example of women leaders fighting to turf out corrupt practices in health schemes. Scores of women sarpanch in the state have been leading a fight to bring good governance in local governing bodies.
"TB is a major stigma in rural areas. We are working with women leaders in western Maharashtra to eradicate misunderstandings about the infection. Many women are not offered treatment because their families think that once the news is out in the community, they will be excluded. However, strong women leadership is helping remove the stigma associated with TB," said Nilima Kadam of Action for Women and Development.
Tobacco and TBThe women of Nandgane village in Jawali taluka of Satara district never knew if there is a correlation between TB and tobacco. But they are certainly aware of the health disadvantages of smoking and chewing gutka. The local women are now running a campaign to stop consumption of any kind of tobacco, particularly the ‘mishri’, a roasted uniformly black tobacco which is used to clean teeth.
"The association between tobacco use and its outcome has for long been suspected but until recently the predominant view was that existing studies were not adequate to provide confirmation of any link. However, more recent studies and some recent reviews of existing studies have provided a better-evidenced link between active and passive tobacco smoking and a range of TB outcomes including infection, response to treatment, relapse rates and mortality," states a WHO report.
"In villages, the fight against tobacco is now taking shape of a fight against TB. The government is launching various schemes to fight TB. But in rural areas the government schemes could reach only with help of these women leaders. Now the government should evolve a participatory methodology involving women and government agencies to combat TB menace," said activist Vilasbaba Jawal.
Taking it forwardSocial activist Varsha Deshpande said that women leaders have a major role to play in the rural health sector. "Women leaders in villages have proven their potential when it comes to destigmatizing TB. When they took over the reins as village heads, their priority was to establish primary health centres and launch special drives to reduce child mortality rate," said Deshpande.
Pune-based Anant Phadke, who works with Jan Arogya, said the government machinery is not serious about the health issues in rural areas and funds under various health schemes never reach the masses. As a result, the treatment of TB and associated problems is delayed. "We need to make the health sector participatory. Let people decide what they need and how to the funds," he said.
How participatory method can check TB- Raising awareness and community mobilization
- Reducing stigma and discrimination
- Screening and testing for TB and TB-related morbidity (e.g. HIV counselling and testing; diabetes scree-ning) including through home visits
- Facilitating access to diagnostic services (e.g. sputum or specimen collection and transport)
- Initiation and provision of TB prevention measures
- Referral of community members for diagnosis of TB and related diseases
- Treatment initiation, provision and observation for TB and comorbidities
- Treatment adherence support through peer support and education and individual follow up
- Social and livelihood support (e.g. food supplementation, income-generation activities)
- Home-based palliative care for TB and related diseases
- Communityled local advocacy activities
Tuberculosis mostly affects young adults, in their most productive years. However, all age groups are at risk. Over 95% of cases and deaths are in developing countries
People who are co-infected with HIV and TB are 21 to 34 times more likely to become sick with TB (see TB and HIV section)
Risk of active TB is also greater in persons suffering from other conditions that impair the immune system
About half a million children (0-14 years) fell ill with TB, and 74 000 HIV-negative children died from the disease in 2012
Tobacco use greatly increases the risk of TB disease and death. More than 20% of TB cases worldwide are attributable to smoking
Vulnerable women- TB remains a major global health problem and a leading infectious cause of death among women
- About 7 lakh women die of TB, and over 3 million contract the disease
- As tuberculosis affects women mainly in their economically and reproductively active years, the impact of the disease is also strongly felt by their children and families
- In 2012, an estimated 8.6 million people developed TB and 1.3 million died of the disease (including 3.2 lakh deaths among HIV-positive people)
- The number of TB deaths is unacceptably large given that most are preventable
- Most TB cases and deaths occur among men, but TB remains among the top three killers of women worldwide
Times of India
16 Jan 2014,
Pune, India
by - Radheshyam Jadhav