A race against time

Shahida was the apple of her father's eye. Her father – Abu – was not well to do, so he married her into an affluent family, hoping that her marriage would provide all that he couldn't.

Ismail was lucky his parents said, to get a beautiful young second-wife, Shahida - meaning witness. He had been married before, but his first-wife succumbed to the scourge of Drug-Resistant Tuberculosis (DR-TB). Their happiness was short-lived. Shahida was diagnosed with DR-TB a year ago. "I did not even know what it was. I had heard of tuberculosis but, DR-TB is something I heard from the doctor, and all I know is that it is a new form of TB," she said.

The drug-resistant symptoms of Tuberculosis (TB) arise when an antibiotic or medicine fails to kill all the bacteria. The remaining bacteria become immune to that particular drug which simplifies the two commonly used drugs - isoniazid and rifampicin – stops having any impact and instead becomes toxic. So doctors prescribe less effective medications which have to be taken for more extended periods while stronger drugs are required to kill all the bacteria.

Shahida is not alone in this journey; many women face a similar predicament. A Ratan Park resident in West Delhi, Simmy Singh, underwent treatment for DR-TB two years ago. She suffered a relapse and is now undergoing treatment for Extensively drug-resistant TB (XDR-TB).

Simmy once worked as a saleswoman. She had dreams and ambitions, but she is now bereft of hope. Too weak to use her motor skills, her brother helps her to sit up in bed. This disease has practically reduced her to a vegetative state.

India has the highest burden of both TB and drug-resistant TB in the world, with 2.7 million of the world's 10 million people diagnosed with the disease in 2017. Some 1,35,000 had the drug-resistant form, of which 1,24,200 had Multi drug-resistant TB (MDR-TB), a quarter of the world's total. India and other poorer countries are struggling to cope as the drug-resistant forms of TB create new challenges, a report said.

It might sound simple at face value, but DR-TB has complicated roots in the health-care system in the country. More than a year ago, Shahida complained of chest pain, a visit to the doctor confirmed there was water in her lungs which had to be drained out through a pipe – a painful procedure. But she did not get better. Her consistent fever and cough sent her oscillating between government and private hospitals, which gave only newer prescriptions each time. After much back and forth, she was diagnosed with TB, and after months of treatment, she was put on new medicines for MDR-TB. The initial delay in diagnosis and lack of awareness among local doctors delayed the entire process. Meanwhile, the monstrous bacteria ate away part of her body and soul making the first line of TB drugs ineffective.

According to a report by First National Anti-Tuberculosis Drug Resistance Survey, 22 per cent of the people diagnosed with DR-TB are resistant to fluoroquinolones. It is a matter of grave concern because this is associated with treatment failure and death. This calls for scaling up of DR-TB treatment with new oral drugs and doing away with injectables, which is possible only when both Delaminid and Bedaquiline (the new oral medications) are readily available.

Senior Advocacy Officer of MSF Access Campaign, Jyotsna Singh said, "Till recently patients (of DR-TB) were expected to take injectables which leave marks and holes on the arms. The challenge is to find a new spot each time when doctors have to inject it on your shoulder. Each day injections need to be given, and they have adverse side effects. Often they lead to hearing loss and blindness or suicidal thoughts."

Shahida can vaguely see silhouettes from far and up close she wonders what her children look like.

"It is because of these reasons you need extreme monitoring which in our does not exist in our system.

Especially in very far-flung centers, you do not have such equipment and resources to monitor and handle such situations. A lot of patients end up losing their hearing or eyesight permanently," says Jyotsna.

The World Health Organization (WHO) issued new MDR-TB treatment guidelines in March 2019. This brief provides a summary of the treatment using – Bedaquiline and Delaminid – which offer better cure rates and fewer side effects using safer all-oral treatment.

"the new medicines do require monitoring but not to that extent as they do not have such harmful side effects and are not injectables," says Jyotsna.

In children, bedaquiline is approved for patients between six and 17 years of age; delamanid is recommended for children three years of age and older.

Ismail and Shahida have two children, a boy of three and a girl of five years. The children have been lucky so far, but not everyone in the family. A heartbroken Ismail narrates his loss, "I had five sisters and six brothers. Now I have three brothers and no sisters. One of my surviving

brothers was in school till last year, but now he is at home undergoing treatment for DR-TB. I have lost many people to this disease."

For those who are fighting this deadly disease for survival, trouble starts when medication is not in supply.

Head of South-Asia, MSF Access Campaign, Leena Menghaney says, "For Bedaquiline we have a decent supply but Delaminid only 400 courses while the patients outnumber it by a significant margin. Already more than half the course has been exhausted. Delaminid is the key drug for patients with pre-XDR and XDR-TB and especially when they are children with DR-TB who have to be given Delaminid in place of injectable. South Africa which has 1/5 of India's DR-TB burden is procuring 3,000 courses in line with the WHO guidelines."

Shahida does not know of the life-threatening situation MDR-TB can create if medication is not consistent and adequate. "I have had medicine for 15 months given by the government hospital. But from May till August, this year I could not get one of the medicines, and it is beyond the means of land tilling people like us," Shahida missed one of her medicines making her prone to XDR-TB. She is awaiting her latest test results.

Money plays a vital role in diseases that can rob you off of your life and savings. Bedaquiline costs 400 dollars for a 6-month course which translates to Rs 28,500. But, Delaminid costs 1,700 dollars for a 6-month course, which is around Rs 1,25,000. Depending on the patient's need either or both are prescribed. Apart from these two drugs, there are tests and other medications that are recommended for a span of 18 to 20 months. If the patient is resistant to fluoroquinolone, then the price for one drug can range between Rs 4,97,000 to 7,70,000.

So what is the way forward? The companies producing these drugs have a monopoly over it. If the government issues a compulsory license which means – the Indian generic companies will have the right to produce these medicines resulting in price reduction.

A heart-broken Ismail says, "This disease is a rakshas. There have been 11 deaths in my house and all due to DR-TB. After the fifth death in my house, we protested, for lack of proper and at times wrong diagnosis but nothing happened." His cry for help fell on deaf ears.

Much like the Indian mythological figure Ravan, the DR-TB has verisimilitude multiple heads, thriving in the slums and lungs of many, often snuffing out their very lives.