India’s battle with TB continues to take lives. And treatment is still hard to manage.

When her 1-year old son became very sick, Mona Balani consulted multiple government and private doctors.

“The doctor would prescribe some medicines, then he’d feel better,” said Balani, who hails from the north Indian state of Rajasthan. “This went on for a year, but the doctors were not able to tell us what the exact problem was. And he was getting weaker every day.”

When a doctor finally ordered a tuberculosis test, Balani’s son couldn’t produce the amount of sputum required for testing, which is physiologically difficult for children because of their instinct to swallow. After X-rays and an ultrasound, he was diagnosed with tuberculosis in his kidneys.

“By then he was too weak,” said Balani. Her son went from weighing 12 kilograms (26 pounds) when he was 1 to 5.5 kilograms (12 pounds) by the time he was diagnosed. “He was so weak we were afraid to pick him up. He took his TB medication for four to six weeks, then he passed away.”

With 2.8 million documented cases of tuberculosis in 2015, India faces more cases of the deadly infectious disease than anywhere else in the world. Though the government has implemented multiple programs to prevent, diagnose and treat TB, it is still struggling to protect children from the infection.

Last month, a study by the Foundation for Innovative New Diagnostics (FIND) and the government’s Revised National Tuberculosis Control Program (RNTCP) found a higher-than-expected incidence of tuberculosis in children in nine Indian cities. The study also detected a higher incidence of multidrug resistant tuberculosis, a strain of the disease that is more difficult to treat because of its resistance to two common drugs.

Government officials, however, say the situation is not as dire as the survey makes it seem.

“The study is not representative and has a selection bias,” said Dr. Sunil Khaparde, the project director of the RNTCP. “This is because the project is catering to cities and is primarily based out of samples coming from tertiary care and pediatric specialists.”

Volunteer organizations working on TB control, though, believe that the sample study reveals a larger issue with India’s pediatric TB problem.

“About a million children [around the world] get TB every year, and many go undiagnosed,” explained Dr. Shelly Batra, president of the TB treatment and prevention nongovernmental organization, Operation Asha. “India has the highest burden of TB in the world, so it goes without saying that we have the highest number of children with TB in the world.”

As with Balani’s son, the very first step in diagnosing TB proves to be a hurdle for children because they are unable to produce sputum. It is difficult even for adults to produce the quantity of sputum required to look for TB under the microscope, an outdated method that continues to be prevalent in India.

“It’s very tedious to make the child bring up sputum, so you have to do a gastric lavage, which is taking out sputum from the stomach,” explains Dr. Ramya Ananthakrishnan, the executive director of REACH, a community health organization. “Many doctors don’t go for it, instead relying on collaborative findings like exposure to infected adults, X-rays and other clinical symptoms.”

Since March, the government has started rolling out GeneXpert machines, which allow for quick and accurate testing with a small quantity of sputum. The machines, which are expected to become widely available, will be focused on testing children suspected of having TB.

However, there are additional challenges in the diagnosis of TB in children. The infection mimics other common diseases, and symptomatic children are often simply administered medication for a cough.

“Very often a child with TB may be neglected for years because people presume it’s just malnutrition, and counseling goes towards better diet and nutrition,” said Batra.

NGOs emphasize the importance of community support to improve awareness about the symptoms and causes of TB. Balani, who lost her son to tuberculosis, now works for Touched by TB, a network of TB survivors who support each other by sharing their experiences and helping patients access treatment. The group also lobbies the government and brings attention to medicine shortages.

Balani believes community involvement is crucial to controlling TB. While government hospitals across India have dedicated tuberculosis units, it can still be a challenge to get treatment.

“First, they have to locate the TB unit, and if the doctor writes tests, they have to figure out where all they have to go for them,” said Balani. “The facilities are there, but there isn’t enough community involvement to link those services, which we are advocating for.”

Government hospital policy requires every TB patient's contacts to be tested for exposure. If a child is TB free, they are still required to go on prophylactic medication for six months, to prevent infection.

However, Ananthakrishnan finds that screening and prophylactic treatment of children remain poor. Children are often referred to a pediatrician away from the main TB unit, which can be confusing to find.

“In a huge district hospital the parents may not even take the child, especially if the child is healthy and active,” says Ananthakrishnan. “They feel worried that why should a child with no symptoms be put on treatment.”

Child-friendly dosages of the medicine are calculated according to the weight of the child. If these aren’t available, parents have to break or crush the pill, which can lead to improper dosing or drug resistance.

“Pediatric formulations are now available through the government, but they are yet to be rolled out across the country,” said Batra. “Till about a year ago, we were all breaking tablets.”

Ananthakrishnan estimates that the rate of children taking and completing prophylactic treatment may be as low as 2 or 3 percent. In private clinics, screening and prophylaxis are often skipped.

Practical difficulties with diagnosis and treatment are far from the only issues TB patients in India face. A persistent stigma against tuberculosis increases hesitation about accessing screening and following treatment.

Around “300,000 children in India are forced to leave school every year because of TB,” said Batra, quoting a study by the government. “Either they are too sick, or nobody wants them, or a wage-earning parent is sick.”

Though statistics on pediatric TB are lacking, Batra says the experiences of infected children paint a disturbing picture.

“The stigma is so much, the children are frightened, they lose their friends,” she said. “I’ve had pediatric TB patients who are crying bitterly not because of TB but because their friends won’t talk to them.”

According to Batra, simply raising awareness about TB will not suffice. Volunteers must intensively counsel every community, to show them how to combat TB, as well as manage and support patients.

Batra’s NGO, Operation Asha, uses volunteers who belong to the same community and religion as the people they are counseling.

“They counsel them against gender biases because very often in the same family a boy and a girl are coughing. The boy will be taken to the hospital but the girl will be rejected,” said Batra. “They sit with them, they eat with them. They are the best equipped to deal with issues of stigma and discrimination.”