Sushila, a volunteer with the Positive Women's network, has spent the last fortnight in constant anxiety. Her 12-year-old son, like her, is HIV-positive, and has been weaker than other children since the time he was born. It was only the regular supply of free medicine given to HIV-positive children that even gave her the confidence to let him go out and play.
But now, with news of the main paediatric HIV medication going out of stock, this 33-year-old mother is worried about what bureaucratic failures will cost her child. And she is not alone in her crushing anxiety.
Cipla, the sole manufacturer of Lopinavir syrup, administered to children living with HIV(CLHIV), recently stopped production of the drug after the Government failed to clear its dues, reported The Hindu. Following this, the Delhi Network of Positive people wrote to the Prime Minister, Finance Minister and Health Minister, seeking intervention. In the letter, activists have asserted that the recent stock out of the essential HIV medicine, Lopinavir/ritonavir, for infants and young children has occurred because of delay in payments to CIPLA.
Cipla has also cited delays in payments by the national programme of the National Aids Control Organisation (NACO) as the reason for its decision not to participate in the bid to produce medicines this year. The letter sent by Rakesh Mohan, a member of the Positive Network, has been signed by 391 CLHIV and 246 people with HIV (PLHIV), including 65 children belonging to Tamil Nadu.
The urgent plea comes because any delay or disruption in the supply of the crucial medicine could lead to major complications for patients. Tamil Nadu President for the Positive network, Padmavathy, says that the shortages will put Tamil Nadu and the country back by nearly a decade in terms of treating HIV.
"You can't imagine the kind of stigma associated with this disease. We have spent years convincing people to first admit that they are positive and then to treat the problem. We have worked hard to ensure that all district headquarters have access to Anti Retroviral Therapy (ART). But now if there is a shortage of medicine, all the effort will go down the drain. This shortage of medicine is completely unacceptable. How can we even explain to innocent children that we don't have medicines to treat them?" she asks.
The main problem is the fundamental medical effect that delays and disruptions could cause. As the NACO website points out, strict adherence to the ART regimen is vital for the treatment to be successful. Any irregularity in following the prescribed regimen can lead to resistance to HIV drugs and therefore weaken or negate its effect.
A March 8 report by The Hindu, says that the Government is likely to procure the drug from a rapid supply facility routed through the Global fund for AIDS, Tuberculosis and Malaria, a multilateral donor agency. However, The News Minute was unable to confirm this with NACO, despite multiple attempts to contact them. Meanwhile, media reports suggest that the Health Ministry has released the first installment of the Rs 6 crore payment due to Cipla Pharmaceuticals.
However, activists say that stocks of drugs are already low in many areas.. "Even if Cipla agrees to become a part of the tendering process, it will take two to six months for the next batch of medicines to be produced," says Kaushalya, a national level member of Positive network.
The current crisis, she adds, comes on the back of frequent delays in the supply of crucial medications. "The syrup that we give for children between the ages of zero to three is already out of stock in some areas and is very low in others. This issue of shortage has been there for a long time, and there just seems to be no solution in sight. Another medicine given to pregnant women and newborns is also low in stock. This is despite reports of that drug preventing HIV in children," she alleges.
Parents like Shakeela, also complain that the current crisis is a culmination of earlier irregularities. "There is already no pattern to how the medicines are disbursed in government hospitals. Sometimes we get medicines for a week, sometimes for 10 days or even a month. We have to keep visiting the hospital based on how many tablets they give us. But now, the thought that my son won't have access to the medicine, making him immune (resistant) to it, is distressing," she says.
Swarna, mother of eight-year-old Lata, found out she and her child were both HIV-positive only after her daughter lost her eyesight when she was nine months old. Recalling the stigma she and her child have received for a disease unknowingly contracted from her husband, Swarna says the governmentâ€™s apathy is most difficult to deal with.
"How can a Government be so apathetic towards its people? What wrong has my child done? This medicine is keeping her healthy. It is not like we can go on the road and protest. We can't let people in the area we live in know what has happened. We are doomed if we don't get the medicine. We can't afford to take it irregularly, because doctors tell us that it won't work then," the 40-year-old laments.
Most experts lay the blame for the problem squarely on the government. A Wall Street Journal report in 2015, for instance, quoted Indian activists to say that the country's HIV programme was in 'shambles', with several government-run treatment centres lacking supply of drugs recommended by WHO. The activists claimed that the problem began when the Narendra Modi Government brought the NACO under the purview of the Health Ministry.
In 2016, the Union Budget increased the allocation for the AIDS programme from Rs 1,397 crore to Rs 1,700 crore. But stock outs continue to be reported across the country. "There is rampant corruption at both State and Central levels," alleges one activist. " How long must people suffer for the Government's failure?"
Kaushalya claims that the situation, has worsened from 2015 and there seems to be no solution in sight. "We have been complaining for years now and everything just falls on deaf ears. We don't know where all the money meant for those affected is going. We are paying taxes and we are citizens. Do we not have the right to live?"
(All names changed on request)