India Interior

A tale of faith and funding

Usha Rai | Updated on January 25, 2019 Published on January 25, 2019

Mona Balani talking to HIV and TB patients

When help tips the scales between life and death for HIV, TB and malaria patients

The invisible but important link between funding and survival of the marginalised fighting life-threatening ailments in the rural outback and small towns is graphically illustrated in the story of Mona Balani, a care and support staffer of the India HIV/AIDS Alliance.

At a preparatory meeting for replenishment for the Global Fund to Fight AIDS, Tuberculosis and Malaria in Delhi, she spoke of the death of her husband, her two-and-a-half-year-old son from a double whammy of AIDS and tuberculosis and her own survival thanks to funding that enabled her to get medicines as well as a job to support her surviving son.

The ‘ AIDS’ family

Mona’s life in Jaipur was shattered when her husband tested HIV positive in the nineties. In 1999, she also contracted the infection and it took another two years before she could pluck up courage to tell her family about it. Due to ignorance about the infection and the small-town mentality, they were nicknamed the “AIDS family” and people would not enter their house. Her husband’s treatment cost ₹50,000 per month and soon the family went broke. Though Mona had tested positive, she could not afford treatment for herself.

Her husband’s health deteriorated with TB which he contracted because of the low immunity. It spread to all parts of his body — lungs, spine. He lost his eyesight, suffered paralysis and finally died in 2005. In 2000, a year after contracting HIV, Mona too got pulmonary TB. It took a long time to detect it though she was coughing for a whole year. The same year, her son, who was one, got TB of the kidneys. Again, there was delay in diagnosis and her son died in 2003.

Mona’s second attack of TB, in the abdomen, occurred in 2006 and once again there was delay in detecting though she went to private doctors. At government facilities there were long queues and doctors had no time for ‘poor’ patients. A senior private physician finally diagnosed it and she was on TB medicines and injections for 11 months. After she was cured of TB, she began ART (antiretroviral therapy) for HIV and now it is under control. In rural areas, in particular, detection is difficult.

In 2005-2006, Mona’s weight dropped to 30 kg and she was frail and listless. Doctors, in fact, said it would be difficult to save her, and her family’s only hope was prayers. The side-effects of TB and the ART medication depressed her and she became suicide-prone. She had no money for herself or for her six-year-old child.

She needed a home and a job but no one was willing to employ an emaciated woman. Desperate for work, she underwent 15 to 16 job interviews in a month.

When life was at a tipping point, her son came and hugged her and cried “my father has gone, don’t leave me.” His agonised cry touched her heart and a new strength surged through her to live. She got a job with PLHIV (People living with HIV) and worked with them for six years and simultaneously completed her graduation and masters. In 2013, she joined the India HIV/AIDS Alliance. “My journey back to life would not have been possible without the support of the Global Fund,” she says.

Besides funding treatment, it supports survivors to find jobs and come to terms with life.

India tops the list of countries with high incidence of TB. According to the Global TB report of 2017, 56 per cent of the cases are in India, Indonesia, China, the Philippines and Pakistan. There is high incidence of childhood tuberculosis too, says Mona. The problem with both TB and HIV is late diagnosis. After diagnosis, patients need good nourishment to cope with the strong medication and its side-effects. TB patients often don’t adhere to the drug regime and give up medication on feeling better. TB patients, she says, need psycho-social support, nutrition and treatment. About a million people or 80 per cent of those taking TB drugs drop out. They then develop drug-resistant TB, which is more difficult to treat, and could die.

So, the civil society meeting, preparing for the sixth Global Fund replenishment summit in France in October, is important. At the meeting, 40 organisations urged India, which carries a huge burden of all three ailments, to raise its contribution and play a leadership role.

Dianne Stewart, Head, Donor Relations at the Global Fund, said the promised replenishment of $14 billion will help save 16 million lives and halve the mortality rate from HIV, TB and malaria. However, the Global Fund Advocates Network, in its Get Back on Track to End the Epidemics, calls for $16.8 billion to $18 billion. Daxa Patel, President of the National Coalition of People Living with HIV in India, says India should contribute at least $40 million, double its contribution at the last Fund meeting three years ago.

India’s health budget is just 1.2 per cent of the GDP. It needs to be raised to 2.5 per cent of GDP by 2025. State-sector public health spending should be raised to 8 per cent of the Budget by 2020 to meet health goals and fully fund the HIV, TB and malaria initiatives, says Dr Sonal Mehta, Chief Executive of the India HIV/AIDS Alliance.

The writer is a senior Delhi-based journalist

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Published on January 25, 2019
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