In June, in the children’s ward of the Durg district hospital in Chhattisgarh, Preeti*, a 14-year-old HIV-positive girl, lay in a cot. She was alone, without any relatives to care for her. Barely 18 kg, she had an extremely thin frame, her face was pale and shrunken and her hands were like sticks. She even found it difficult to speak.

Preeti said her parents barely looked after her (they are not HIV positive) and often sent her to work in other people’s houses. In hospital, Preeti was diagnosed with extrapulmonary tuberculosis.

“Gali bakake khana deti hai,” she said. (My mother gives me food only after verbally abusing me). She wanted to eat khichdi, not the roti that her mother makes.

K Mukesh, secretary of the non-profit, Chhattisgarh Network of Positive People, and his colleague, Rajshree Sahu, got Preeti two glasses of tea and a packet of biscuits, which she wolfed down hungrily. Mukesh asked Rajshree to cook some khichdi and send it across to the girl in the evening.

Preeti started first line anti-retroviral treatment in 2007. In 2011, her condition deteriorated, and her CD4 levels (an indicator of immunity in the system) dropped rapidly. Her CD4 count was often less than 100 (less than 500 is considered to be below normal), prompting the doctors at the ART centre to refer her for diagnosis for second line treatment. Second line ART is given after the first line treatment fails, when the body develops resistance to first line drugs.

“She had suffered several stock outs before her treatment failed,” said Mukesh. “She also has no support at home. I do not think she gets one square meal a day.”

It took five years for Preeti’s second line treatment to start.

Second line treatment delay

As in Preeti's case, there are many HIV positive patients who are waiting for their second line treatment to be approved. But Chhattisgarh’s health machinery works at its own pace, and falls short of addressing the needs of such patients.

Chhattisgarh has five ART centres at Raipur, Durg, Bilaspur, Ambikapur in Surguja district and Jagdalpur in Bastar district. But patients from all these centres must go to state capital Raipur to test for second line treatment. If they start this treatment, they also have to visit Raipur each time to pick up their regular dose of ART.

Every HIV positive patient has to undergo a CD4 test every six months. Usually a patient whose CD4 is less than 500 despite first line treatment must see a panel at the Dr Bhimrao Ambedkar Medical College in Raipur that determines if the patient is resistant to first line drugs and approves second line treatment.

But activists say the panel is barely functional.

“The panel that approves second line treatment barely sits every Tuesday, as they are supposed to,” said Rinky Arora, president of the Chhattisgarh Network of Positive People. “They sit for sometimes an hour or so. It is not enough to look into all the pending cases.”

The patient’s viral load – the term used to describe the extent of HIV in the blood – is also tested to check if it is within acceptable limits. But this facility is not available in Chhattisgarh, and the patient is either sent to Kolkata for the test, or samples are sent there.

There are only 10 viral load testing machines in the country, most of them in the metros or high endemic areas such as Maharashtra. All others states are linked to these centres. In the US and other first world countries, the patient is also tested for drug resistance (not just viral load and CD4) for which there is no facility in India.

After the results arrive (which can two weeks or a few months), the State AIDS Clinical Experts Panel at Raipur vets the case after examining the patient.

Apathetic system

Some patients who are sick for months, indicating that the first line of treatment is not working, escape the notice of the ART centre staff.

Raipur resident, Gopal*, 43, has been sickly for nearly a year and has stopped working. “Mera shareer sukhte ja raha hai,” he said in a phone interview with My body is literally drying up.

About four-five months ago, when he got his CD4 checked, it was less than 100, he said. That itself should have alerted the ART staff. One doctor, he claimed, accidentally saw his CD4 count and said that he needed to get himself checked for second line treatment.

Gopal did not not tell the doctors that he has been sick.

“They speak very badly to us,” said Gopal. “It’s difficult to hear their cruel words. I reduce my interactions with them. In such a situation, can we survive HIV?”

Gopal was called before the panel for three successive weeks, but each time he went, he didn’t get to meet the doctors. There wasn’t enough time. "This is pointless,” he said.

Some patients are called to Kolkata for a check-up, which is not feasible either.

Said Savina Anant, project director of Vihaan, a national programme led by the India HIV/AIDS Alliance that looks into the care and protection of HIV positive people: “The patients who are asked to go to Kolkata refuse to go. One of our patients has to go to Kolkata for the second line treatment.”

Varun*, 38, has a CD4 of 95, and has had skin ailments for nearly four months. “The doctors are telling me to go to Kolkata,” he said, angrily. “They are not even specifying where is this hospital, or who I should meet. How can I just take off to Kolkata?”

He works for a private company, and was being treated by a private doctor earlier.

Fatal delay

In 2011, the Chhattisgarh Network of Positive People arranged to take Preeti to Kolkata for a viral load test. It took a few months for her reports to come.

Since the viral load in her body was unacceptably high despite treatment, it indicated that she need to switch to second line drugs.

But Preeti was unable to present herself with her reports before the state panel at Raipur because she was either sick, or in the hospital, and because her parents were not interested.

The people associated with Network who took care of Preeti when she was admitted in hospital said that her parents would never volunteer to take her to meet the panel.

“The panel sits only for an hour or hour and half on Tuesdays. There are so many in line. I have myself got her about six times to Raipur. Her parents would not come along. But the panel was not able to look into her file,” said Mukesh.

In July, the last time Preeti was in hospital, the administration decided to start her second line treatment.

“We want her to take anti-TB drugs for some time and then start second line treatment,” said Dr Binjhwar. He said he would look into complaints that the panel sat too briefly on Tuesdays.

Preeti started her second line treatment in the first week of July. On July 29, Dhaneshwari Yadav from Vihaan decided to see how she was doing. She found her all alone in the house. “She was on the floor in her house, all alone, completely drenched in sweat,” said Yadav. “There was just a ART box and a bottle next to her. We had to take her to hospital.”

But the Vihaan team had to first locate her parents. After they were found, they picked up the patient in a car and took her to hospital. Preeti died on the way.

“If the state monitors each person in the state, I bet every day, two children must be dying,” said Mukesh. “This is a matter of great shame for the state.”

*The names of some HIV positive persons have been changed to protect their identities.