(This story has been refiled to correct spelling of finance minister’s name in paragraphs 16 and 26)
By Anuradha Nagaraj
MUTYALACHERUVU, India (Thomson Reuters Foundation) - Tuberculosis patient Yerdodamma Peddeti is hungry, but the wood fire stove outside her home in southern India hasn’t been lit all day.
In pain and battling the side effects of treatment, Peddeti says she hasn’t been able to work for years, and has gone deeply into debt in order to sustain herself and her 12-year-old son.
“I don’t have the money to buy food or the energy to cook,” she said, sitting at the doorstep of her one-room home in Mutyalacheruvu village in the southern state of Andhra Pradesh.
Each day, the 40-year-old waits for her sister to stop by with a few vegetables, light the fire, cook a meal, feed her and then help her use the toilet.
“I also don’t eat much because I am scared I might need to use the toilet. I can’t walk to it unless my sister comes and supports me. So I wait, for food, to use the toilet and also for death,” she said.
Peddeti’s skeletal frame has been ravaged by multi drug-resistant tuberculosis (TB), which doctors and campaigners say is India’s biggest public health crisis.
Patients like her are resistant to treatment with at least two of the most powerful standard anti-TB drugs, isoniazid and rifampicin.
Adding to the health crisis is the increasing debt burden on patients as they try and stick with the treatment, say public health campaigners.
Expenses such as transportation and the cost of food, combined with the loss of income, push families into debt and are disincentives to continuing treatment, they say.
A study presented at the European Respiratory Society’s 2016 conference in London documented the “catastrophic costs” incurred by TB patients undergoing treatment at private hospitals.
The study showed that patients were spending 235 percent of their income on the disease - meaning they had to borrow money to support their treatment.
“Not only is TB a disease of poverty, it also causes poverty,” said Zarir F. Udwadia, a leading chest physician and co-author of the study.
India has the highest number of TB cases globally, according to the World Health Organization’s 2017 report, and is also among the top five countries that report the highest multi drug resistant cases.
Over the past year, there were more than 1 million TB cases reported across India, according to health ministry data.
Campaigners argue that the numbers are even higher, as there are gaps in the detection and treatment of TB.
“It affects mainly poor and malnourished people,” Finance Minister Arun Jaitley told parliament in his Feb. 1 budget speech - a rare official acknowledgement of the scale and impact of the disease.
The government has promised extra support for those affected, but details of the plan remain unclear.
At the Hospital of Infectious Disease in Bathalapalli, run by the charity Rural Development Trust, Ganga Devi was waiting to collect her medicines.
She left her home at 4:30 a.m. to make sure she reached the hospital by 9, covering a distance of 100 km (62 miles) from Bandaralapalli village. The journey cost her 300 rupees ($5).
A month since she was diagnosed with TB, she is counting every rupee she spends on her treatment, painfully aware that it is eating into her family budget.
“We have a loan of more than 100,000 rupees to pay back,” Devi said, adjusting her face mask as she spoke.
“We took it to invest in our small farm where we grow groundnut and cotton. But there are no profits this year and now my health is sucking up finances.”
At the same time, the family’s expenses have shot up. They now buy vegetables twice a week rather than once every two weeks, and Devi’s meals must be supplemented with eggs and meat.
“And it’s just for me,” she said. “My husband can’t afford to eat the same meal.”
Peddeti’s hopes of getting better are diminishing, even as the Indian government promised a bigger budget to fight TB this year and additional nutritional support for patients.
The government will give 500 rupees ($8) a month to all TB patients for nutritional support during their treatment, Jaitley announced in his budget speech.
This is in addition to the free medicines provided by the government to patients.
“We need to understand when this scheme will be rolled out, how will the money be dispensed and if it includes all TB patients, including those seeking care in the private sector,” said Chapal Mehra, of the advocacy group Survivors Against TB.
“It’s important this scheme is inclusive and easy to access.”
The government “hopes” to reach almost 3 million patients annually, providing assistance to those receiving treatment in both private and public facilities, said Sunil D. Khaparde, head of the health ministry’s central TB division.
“The scheme will roll out in April 2018,” he said in an email.
Even a little more financial support could make all the difference for people like Peddeti.
Patients often stop taking their medicines due to the side effects and the financial strain, said Radha Garikapati, a counselor at the Hospital of Infectious Disease.
“Adherence has always been our biggest challenge,” she told the Thomson Reuters Foundation between counseling sessions.
“Almost all patients tell us about their debts and finances,” she said.
“We provide them with some nutritional support, but wages lost due to the illness is something we can’t compensate.”
Peddeti recalled the days she worked on a farm, earning enough to take care of herself and her son.
“I was self reliant,” she said as she watched her sister light up the stove.
“The disease has driven me to poverty and despair,” said Peddeti. “I would rather be dead.”
Reporting by Anuradha Nagaraj, Editing by Jared Ferrie. Please credit the Thomson Reuters Foundation, the charitable arm of Thomson Reuters, that covers humanitarian news, women's rights, trafficking and climate change. Visit www.trust.org