At one end of the labyrinth that is the H-Block of Safdarjung Hospital in south Delhi, right next to the enormous casualty ward is one of the Capital’s nine Antiretroviral Therapy (ART) centres. A small room for the doctor on duty, one each for the male and female counsellors, a window for dispensing medicines, a computer room and a few chairs for those waiting their turn are all that make up the centre. Nondescript, it belies its role in the fight against HIV/AIDS in India, which at 21 lakh has the third-largest population of HIV patients in the world, outnumbered only by Nigeria and South Africa. Over seven lakh Positive people across the country now depend on the decade-old State-run ART programme.
At the centre in Delhi, a handful of people, clutching medical documents, meet the doctor and queue up for a cocktail of drugs that is their only defence against the virus. Today is a good day. There’s no shortage of medicines, and everyone who visits leaves with what’s prescribed for him or her. But how long will they be able to do so? Will the stocks run out? The questions hang in the air, heavily.
The indicators of the impending crisis are many. The Delhi Network of Positive People (DNP+), a support group run by and for HIV-positive people, has filed no less than 40 complaints since 2011 about the shortage of essential AIDS-related testing kits and medicines; 22 of these were filed in the past year alone. News of such scarcity has also been trickling in from other centres across the country. The website of the State’s procurement agent, Rites, for instance, shows that 60 tenders have been invited for supply of various items under the National AIDS Control Programme (NACP) in the last four years. Many of them were re-issued when requirements were not fulfilled.
It was in September and October last year that the most acute shortages since the beginning of NACP were reported. Across India, the Viral Load (VL) tests, essential in identifying those who are not responding to treatment, are either extremely scarce or out of stock. There is also a severe shortage of Nevirapine, which prevents the spread of infection from mother to child. Dried Blood Spots (DBS) tests, used to identify if an infant is positive, have also run out in the last four months. Positive patients are increasingly being given smaller courses of medicine, amidst fears of an imminent empty shelf.
The situation was so bad last year that 1,200 bottles of Lopinavir/Ritonavir (LPV/R) syrup, another paediatric drug, was arranged by Clinton Health Access Initiative (CHAI) to be brought from Nigeria. On another occasion, a senior National AIDS Control Organisation (NACO) official had to plead with the pharma giant Cipla to supply the requisite medicines, stating in his letter that “the programme will not have any drugs to dispense to little children from September 30”. Cipla eventually supplied around 2,500 bottles of LPV/R syrup, solving the problem temporarily.
“The last three years have repeatedly seen a shortage of life-saving ARVs (antiretroviral drugs) as well as diagnostics,” says Mihir Sonam, a representative of the Delhi-based Lawyers Collective, which has dealt with HIV/AIDS-related laws since the late ’80s. “Simply put, this indicates that there are major problems in all parts of the system — forecasting, procurement and supply chain management. The entire thrust of NACO’s policy is for people to know their status as early as possible. If there are no testing kits even, how is this possible?” he asks.
Close call
NACO, the country’s apex body, has not had a secretary since August last year. Autonomous since its inception in 1992, it was recently brought under the aegis of the National Health Mission (NHM), raising fears of red-tapism. As for raising capital, the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM), the largest funding body in this segment, is currently reviewing India’s applications for access to over $850 million earmarked for it during 2014-17. The Bill & Melinda Gates Foundation, however, withdrew its financial support to India’s AIDS programme in 2013.
Meanwhile, pouring in from across the country is news of drug shortages at various levels and non-payment of salaries of aid workers who work with high-risk communities and play a pivotal role in preventing the disease from spreading. Apart from Delhi, Hyderabad and other parts of Telangana, Andhra Pradesh, Goa and Mizoram have also reported shortages and lack of payment . There are reports too of non-availability of condoms across India, including in Tamil Nadu, a state which has consistently been among the top performers in key health indicators, such as numbers of institutional deliveries, immunisations and health insurance.
To top it all, the recent Union Budget has slashed funding to key AIDS prevention programmes, such as free condom distribution as well as the Information, Education and Communication (IEC) programme. This, when the entire spend on public health by the Centre is less than one per cent of India’s GDP. Many stakeholders are also raising an alarm over the apparent shift in focus from prevention to cure — a regressive strategy.
India has been running one of the most successful AIDS programmes in the world. The NACP, since its launch in 1991, has seen the numbers of newly infected patients dwindling steadily. After 2000, there’s been as much as a 50 per cent decline. But some like Vikas Ahuja, Positive since 1992 and the president of the DNP+, believe that India is now losing ground. “I can guarantee that when the surveys are conducted in 2015, for the first time in a decade we will see a rise in the number of HIV/AIDS-infected,” he says, when we meet him at the DNP+ office, a three-bedroom apartment in the bylanes of south Delhi’s Neb Sarai, his tone underscored by desperation rather than anger. “The crisis is most severe now,” adds Ahuja, “earlier, at least we knew who to go to in case there was a problem. Now even NACO is not really there. Who do we turn to? We’re against the wall.”
The silent treatment
Ahuja is not the only one raising an alarm. Across the board, doctors, lawyers, other People Living with HIV/AIDS (PLHA) groups, international observers and largely everyone outside the Health Ministry and its subsidiaries, are vociferous about the problems.
“The crisis began developing from 2013. It has its origin in faulty procurement of key supplies like test kits, ART medicines and so on,” says Prasada Rao, special envoy of the UN Secretary General on HIV/AIDS for the Asia-Pacific region. “Occasional shortages can result from problems with the supply chain, but such temporary shortages have always been overcome by timely action. But this time it appears to be much more serious, and [the shortage] has lasted for a longer period,” says Rao.
Stakeholders who have fought hard to make India’s AIDS programme a success now fear a complete disintegration. “AIDS is like diabetes in one sense; they are both treatable. Only in the case of AIDS, you have to ration your life. If a person is missing his dose, it can have severe consequences,” says Chennai-based Dr Sundar Sundararaman, who was part of the national core group that initiated the NACP consultations 25 years ago. Given the large number of patients who rely on the State-run ART programme, he worries that its problems will leave many in the lurch. “Private treatment is frightfully expensive, and what is going on right now is an absolute public health disaster. The health policies are not at all pro-poor, and I wonder if the Prime Minister even knows the seriousness of the situation.”
Meanwhile, public health officials either have little to say about the issue or are unwilling to comment. “There is no shortage of testing kits,” says Dr Sunil Khaparde, deputy director-general, NACO, who maintains a stoic silence on the non-availability of essential drugs. NS Kang, the additional secretary and de-facto head of NACO, and in-charge of the Central Government Health Schemes (CGHS), like other senior officials approached by BLink , also refused to talk. Even non-governmental but influential bodies, such as the Bill & Melinda Gates Foundation and GFATM, decline comment on the drug shortages, redirecting us to NACO.
What now?
In Chennai, P Kausalya, founder of the Positive Women Network and one of the first Indian women to openly state that she was HIV-positive, says, “They keep reducing the dosage period every time we go to the centre. At least earlier there was more media coverage on the issue, but now that has reduced almost to nil.” </p><p>Last week, even as the world commemorated 30 years since the first AIDS test was conducted, India braced for uncertainty in the immediate future. While funding agencies and the government are trying to get their act together, until they do, people like Ahuja must brace for a drug drought. “Treatment is the most important aspect for a Positive person,” he says, “a person suffering from HIV is already going through a lot. And this is making it much worse.”