When the parents of a four-year-old HIV positive patient from Badgaon village in Durg district of Chhattisgarh failed to turn up as scheduled at the Anti-Retroviral Therapy centre in the district hospital, Bindu Kaur, an outreach worker, decided to visit the family.

The girl’s parents, who are agricultural labourers, were scheduled to collect her monthly supply of anti-HIV drugs on July 18. They would take a three-hour bus ride every month to bring her to the centre to pick up her medicines. But when they visited the centre in June, they had to return home empty handed due to an acute shortage of paediatric HIV drugs all over Chhattisgarh. The stock-out was the third in a year.

Kaur works for Vihaan – a programme led by the India HIV/AIDS Alliance – which looks into the care and protection of HIV positive people. They also track HIV positive people who do not turn up to collect their medicines each month. Kaur wanted to inform the family that the drugs had arrived. But when she reached their home, she was told that the child had died.

Kaur said that the patient’s father told her that she died very suddenly last month, and that they could not even take her to the hospital.

Three stock-outs in nine months

Chhattisgarh was not on the radar when the National Aids Control Programme started in 1992. At that time, the states with large numbers of HIV positive people were Andhra Pradesh (now Telangana too), Maharashtra, Tamil Nadu and Karnataka, and the focus of the National Aids Control Programme was largely centred on these states. In about 10 years, when high endemic states managed to reduce the rate of new infections substantially, Chhattisgarh and a few other states registered a rise in the number of HIV cases.

In the past two or three years, there have been a series of stock-outs of anti-HIV drugs in India, mostly related to drugs given to children. In the past nine months alone, there were three stock-outs of the zidovudine-lamivudine combination – November-December, in April (briefly) and in June-July – in Chhattisgarh.

Stock-outs of anti-HIV drugs have also been reported from states like Maharashtra and Karnataka. But in Chhattisgarh, activists say that they are seeing cases of drug resistance and deaths particularly among children after a prolonged stock-out of these drugs.

The problems with stock-outs can be traced to a decision made by the central government to slash the budget of the National Aids Control Organisation in 2014-'15. This affected the Aids control programme badly, leading to stock-outs. Though the Union Budget increased the allocation from Rs 1,397 crore to Rs 1,700 crore earlier this year, many states including Chhattisgarh, Maharashtra and Karnataka face regular stock-outs.

“The drugs have to come from NACO,” said Dr SK Binjhwar, additional project director of the Chhattisgarh State Aids Control Society. In Maharashtra too, the state society blamed NACO for not dispatching the drugs on time.

However, in an interview to Scroll.in, Dr RS Gupta, the joint commissioner of NACO, put the onus of plugging the shortage of drugs on state Aids control societies. He also said that paediatric drugs have been tougher to source.

Desperate measures

As a result of frequent stock-outs, some doctors resort to desperate measures to ensure that patients continue with the treatment. For instance, in Maharashtra, doctors changed the medicines of some patients suddenly after a stock-out.

In December, 2015, in Chhattisgarh, there was a bizarre case of an HIV-positive child dying after he was administered an adult dose following a stock-out of paediatric medicines in November and December.

Rahul, 10, from Bhilai city was considered to be a healthy child, chubby even. He took antiretroviral medicines regularly till paediatric anti-HIV drugs went out of stock in the state. His parents said that Rahul’s doctors possibly saw his good health and higher than average weight as an advantage, and decided to prescribe an adult-dose, which was in stock.

“The doctor told me the dose was half a tablet in the morning and a full one in the evening,” said Rahul’s mother. “Within a month of taking the new dose, he got fever, and he was getting breathless.”

On December 27, Rahul got very sick. “He kept asking for water,” said his mother. “No amount of water was quenching his thirst. He died the next day in the wee hours of the morning, without warning, at home.”

She said the doctor later told her that she was supposed to give half a tablet both in the morning and at night. “Tell me, why I would wilfully get this wrong?” she asked.

Stock-outs and drug resistance

In several states, people who do not get anti-HIV drugs at the government centre due to stock-outs buy medicines in the market out of desperation. But HIV patients in states like Chhattisgarh, where the private health infrastructure is not robust, do not have many options.

Most times, HIV drugs are not even easily available in the private sector in this state, least of all paediatric HIV drugs.

In June, Bhilai resident Kirpal Singh was thrown into a panic when his HIV-positive five-year-old son, who had not taken his medicines that month because of a stock-out, got high fever and refused to eat.

“I heard that we could get the drugs in a private medical store in Raipur,” said Singh, who holds a government job. “I drove there, and the stock was over.”

When his son’s condition worsened, the boy was admitted to a nursing home. “I was considering going to Nagpur (in Maharashtra) to buy the drugs,” said Singh. “Luckily for us, by the end of June, the drugs arrived in Durg.”

He added: “I worry that he will develop drug resistance.”

Singh’s fears are not unfounded. Drug resistance is the fallout of irregular treatment. Thus it is essential for patients on antiretroviral therapy to take their medicines regularly. In fact, patients are even asked to set alarms lest they forget to take their doses at the required hour. Drugs are also distributed in such a way that people are directed to turn up at the ART centre every month just before their monthly quota finishes.

At an ART centre. Photo: Menaka Rao.

One of the early warning indicators to identify factors known to be associated with HIV drug resistance, as suggested by the World Health Organisation, includes stock-outs of routinely dispensed ART medicines or a thwarted drug supply continuity.

Chhattisgarh also has more children suffering drug resistance, as compared to adults. Of 612 children taking ART in the state in 2015-’16, 45 (7.4%) are on second line treatment (a step up from the basic first-line treatment). As compared to this, only 31 adults, of the 8,001 (0.39%) on ART are on second line treatment.

Lost patients

One of the biggest challenges in the Aids control programme is the care and protection of HIV positive patients. How does the programme ensure that HIV positive people visit centres regularly to test various parameters and to collect ART drugs? How do they survive as someone living with HIV in society given the stigma around HIV/Aids?

The two are linked closely as the adherence to treatment falls apart largely due to the stigma attached to the disease. Thus, any Aids control programme needs to have a feature in which patients are counselled regularly to quell their fears.

Said Mona Balani, from the India HIV/AIDS Alliance: “There was hardly any mandate for care and support of people living with HIV in Chhattisgarh. Only in 2013 when our programme Vihaan for the care and support of HIV infected people started, did we even look for people lost to follow up.”

Nearly 30% of patients were lost to follow up in Chhattisgarh until 2010. In 2013, Vihaan tracked down 1,079 of them.

Lost to follow up patients are those who give up and stop visiting government ART centres after they are repeatedly sent back home without medicines. This happens particularly among the poor, who can ill afford to spend money and time to reach ART centres that are often hours away from their homes.

K Mukesh and Savina Anand of the Chhattisgarh Network of Positive People counsel a HIV positive woman who wanted to quit treatment because she feared that her nails will become black after treatment. She believed that black nailswould give her HIV positive status away. Mukesh told her that he had been taking ART treatment for 12 years and is doing well. "Do I look sick?," he asked her. An HIV positive person can have a full life, they told her. Photo: Menaka Rao.

Naveen Pathak, programme manager, Vihaan, said that nearly 10% of the lost to follow up cases they tracked down were due to death of the patient, while about 56% had incorrect addresses. “Only after that have the lost to follow up cases reduced and come down to about 20% of the total registered patients,” said Pathak. This is still much higher than the national average of 6%-9%

The government does not track down cases that are lost to follow up. Dr SK Binjhwar said that the state updates its system when Vihaan gave it data.

“I feel our lost to follow up percentage is so high because possibly there are few deaths among them,” said Vijaysham Thakur, assistant director and statistical officer of the state Aids control body.

About six months ago, the Chhattisgarh Network of Positive People tracked down lost to follow up cases in Durg, Rajnandgaon and Raipur. In the past six months alone, there were 133 deaths in the three districts.

“We continue to track cases lost to follow up,” said K Mukesh, general secretary of the Network. “We could track only about 60%-70% of the cases. We do not have the budget to send outreach workers to all houses.”

As per the figures provided by the Chhattisgarh State Society for Aids Control, the number of deaths of HIV positive people in 2010-’11 was 307, which shot up to 509 by the year 2015-’16, indicating more people brought under the programme. This is still short of the NACO estimates of 1,062 deaths in 2015, which means about half of the deaths are unaccounted for.

Drug resistance

Kiran* was born HIV positive in 2009 and started treatment soon after. But in 2010, following a major stock-out, her parents stopped taking her to the ART centre. They managed to restart treatment only last year by which time the child’s illness had advanced.

During the stock-out in June-July, the eight-year-old had to be admitted to Dr Bhimrao Ambedkar Memorial Hospital in Raipur. When this reporter met her, she was kept elevated on a cot. Her bones hurt and she was not able to breathe properly, she said. She had high fever and loose motions too. Her body had shrunk to a mere 10 kg.

“She was about 15 kg-16 kg earlier. Now she is even worse,” said her father, who works as a daily wage labourer in Raipur.

The child had CD4 count of just six. The count determines the level of immunity in the body, and the normal level in a healthy person is over 500. The doctors took a sample of her blood to check viral load, which indicates whether the anti-HIV drugs are working. The test was conducted in Kolkata as there is no facility for this test in Chhattisgarh. When Kiran’s results arrived in two weeks, the viral load was found to be higher than normal. She was then put on second line ART treatment.

The reasons for drug resistance are many, for instance, how the body adapts to the therapy and the adherence to treatment. Kiran and her parents were lost to follow up for a year or two before they restarted treatment. Both the gap in the treatment, and the stock-out that led to it, may have resulted in Kiran developing resistance to first line drugs.

About 10% of children in India fail their first line antiretroviral treatment in just 4-5 years. “Most other children continue to be on first line treatment without ART for 8-10 years,” said Dr Mamata Manglani, who runs the Paediatric Centre of Excellence in HIV care at Lokmanya Tilak Municipal General Hospital, Mumbai.

K Mukesh said that the increasing number of drug resistant children worry him.

If a child moves from first line treatment to second line so early in life, it reduces the scope of living a long life with HIV. In India, currently NACO only provides for third line treatment at most, which has not yet started in Chhattisgarh.

“If an adult like me becomes resistant to first line treatment, it is fine,” said Mukesh. “I have still lived a life. What is the scope for a child who becomes resistant to first line drug so early? How long can they live?”

Names of some HIV positive people have been changed to protect their identity.