Tuberculosis has killed more people in human history than any other infectious disease and is spreading across modern India. Channel NewsAsia’s Get Real meets the heroic NGO workers who give India’s TB patients hope to beat the disease.
INDIA, October 26, 2015: Abdul, 24, is no stranger to tuberculosis. His brother died two years ago from TB and now his wife, Ishrat, is in the hospital with the same disease.
What started as a simple cough became a 10-month long treatment for TB. Instead of getting better, Ishrat became weaker and weaker. They finally discovered that Ishrat had multi drug-resistant TB, or MDR-TB. That means her strain is resistant to two of the most powerful drugs used to treat tuberculosis.
Weighing just 28 kilograms and her right lung completely destroyed, Ishrat is now fighting for her life.
According to the World Health Organization (WHO), India has the most number of drug-resistant TB patients in the world, with one in five living in India. Each TB carrier is estimated to unknowingly infect up to 15 people each year. While it may be the second deadliest infectious disease in the world after HIV/AIDS, it is also a curable disease.
So why are people still dying from it every year?
THE BLAME GAME - PRIVATE MEDICAL CARE
To say who exactly is responsible for contributing to the growing rates of TB resistance is difficult, as the people, patients, private and public sectors could equally be at fault.
“In some ways the medical community must ask itself whether this is the most negligent form of medical practice ever seen across the world,” said Ms Leena Menghaney, India’s access campaign coordinator of Doctors Without Borders.
Many patients who seek treatment come from rural areas of India with the impression that if they go to government hospitals, they would not get the proper care and attention needed. Some also choose private practitioners because of the immense social stigma associated with TB in India.
“I have seen many cases in which people catch the disease from others who suffered from it,” said Pooja (not her real name). “They stay far away from you and giggle at you.”
But choosing to keep her disease a secret may not prove to be the better choice. Pooja’s doctor prescribed her medication simply based off a chest X-ray and instead of getting better, her condition went from bad to worse. For two years, Pooja’s private doctors treated her with drugs she was resistant to.
“The private sector basically does not know how to treat drug-resistant tuberculosis. They pile antibiotics after more antibiotics without actually diagnosing the problem,” said Ms Menghaney. “When they have no more drugs to prescribe, they send the patient to the public sector when the patient is dying.”
Dr Rajeev Ranjan, a practising physician, said: “They feel that just because they pay money to these private practitioners, proper attention will be given to them.”
Pooja’s parents borrowed money from relatives and friends to help treat her disease. But two years later, she now has Extensive Drug Resistant-Tuberculosis (XDR-TB), a condition which makes her immune to four of the strongest anti-TB drugs. She now has to go through two more years of new intensive treatment.
THE BLAME GAME - PATIENCE NEGLIGENCE
Patient negligence is also a factor in the rising numbers of TB. The side effects related to TB medication deter some patients from continuing treatment. For those with drug-resistant TB, the drugs are more toxic and the chances of survival are only 50 per cent.
According to Ms Menghaney, many patients get discouraged during the course of treatment.
“The survivors of drug-resistant TB are the heroes because the treatment is very painful and has side-effects like depression, deafness, and seizures. I have seen patients drop out because they feel the treatment is worse than the disease,” said Ms Menghaney.
Since the 1960s, India’s government has had a national tuberculosis program to control the outbreak of the disease. But it was revamped in 1993 to implement the Directly Observed Treatment Short-course (DOTS) strategy to provide a more comprehensive way to control TB.
The DOTS programme was created to ensure that each individual obtains supervised treatment and gets the best anti-TB medications available. Patients would consume their anti-TB medication under the supervision of a health worker or a trained person. Should the patient skip their medication, a health worker would check up on them.
While the programme was at that point in time ground-breaking, a worrying trend occurred 10 years on. The number of people developing drug-resistant TB in India was increasing rather than decreasing.
In Channel NewsAsia's second episode of Get Real, India’s Silent Killer, the team visited a DOTS centre in Bihar, India, only to find it closed and operating for just four hours a day.
For patients like Pooja who need to be on medication every day, she should have been receiving her medication personally at the DOTS centre with healthcare workers monitoring her and ensuring that she follows the full treatment. Instead, DOTS centres dispense drugs three times a week. Pooja has never gone to a DOTS centre, and no one has checked up on her.
Many of the patients who suffer from TB come from low-income families and are unable to travel far distances to the DOTS centres during work hours on a daily basis.
BRIDGING THE GAPS
Operation ASHA, an NGO supporting the fight against TB, believes that DOTS is not patient-friendly. ASHA means hope in Hindi.
“(Patients) are handed medication for two to four weeks. Unfortunately at times, even for months, nobody observes them,” said Mr Sandeep Ahuja, CEO and co-founder of Operation ASHA.
“Nobody bothers to follow up or educate them, or tell them that leaving treatment midway is horrendous. It will practically leave them to death and make them a messenger of death for their family, their neighbours and their co-workers.”
Operation ASHA is working towards improving TB care for the poor by supporting the DOTS programme with a focus on the patient. They ensure that their centres are nearby major bus terminals, near major exits and entrances to urban slums so that patients don’t have to travel long distances to get to them. They are also training a network of volunteers who work across the low-income neighbourhoods of eight states in India to help patients stick to their anti-TB medication.
AHSA is also bringing in technology to long-term patient care. A biometric tracking system tracks every dose taken by every patient. Each patient and an ASHA worker will give their fingerprints simultaneously to ensure that the medication was taken under observation. Should a patient miss a dose, a message is sent to their mobile number to alert them. Within 48 hours, an ASHA worker must track the patient down and counsel them to stick to their treatment.
Said Mr Ahuja: “For ensuring supervised doses of 90 per cent and above, our worker gets an incentive of 500 rupees every month. It’s about US$10, but imagine that in the slums and villages where the average income of a person is less than US$100, US$10 is a fairly substantial incentive.”
Watch a video 'Hope for the hopeless'
Source: Channel NewsAsia