For more than three weeks, Jaiprakash, who lives in India’s capital Delhi, has been taking 11 tablets a day instead of the two he is supposed to take.
The reason, the 44-year-old explains, is that he does not have access to the correct dosage of the drug combination he has been prescribed for HIV. So, he found a temporary workaround – he ingests extra pills from a bottle of low-dose tablets usually given to children.
Jaiprakash is one of hundreds of thousands of Indians living with HIV who depend on free drugs provided by the government through antiretroviral therapy (ART) centers across the country.
For weeks he and other members of an HIV activist group have been protesting outside the Delhi office of the National AIDS Control Organization (NACO) – the federal agency that buys drugs from pharmaceutical companies by issuing calls for tenders. They allege there is a critical shortage of essential medicines, including Dolutegravir 50mg – which Naco recommended as “the preferred drug for all lines of treatment for HIV infection”.
These drugs must be taken daily – experts say interrupting treatment can cause a person’s viral load to rise, increase the risk of HIV transmission and drug resistance, and make them more vulnerable to secondary infections such as tuberculosis. Although the drugs are available from private medical stores, many cannot afford them.
Hari Shanker Singh, one of the protesters, says ART centers used to provide drugs for at least a month.
“But over the past few months, we started getting reports from our members in various states that they were only on medication for a few weeks. Then that period started to get shorter as well,” he claims. , adding that it is difficult for people. who cannot afford to travel to ART centers every few days.
India’s health ministry – to which Naco reports – has denied the allegations.
“There are no drug stock-outs and there are no cases of disruption or non-availability of treatment services or ARV drugs at national and state levels,” the ministry said in response to the complaints. BBC questions.
Activists allege the current disruption is because the tender was published late and the process was further delayed because “the shortlisted bidder turned out to be blacklisted”.
The Department of Health did not respond specifically to the BBC’s question about the allegation, but said “new orders for supplies for the next batch of several drugs” had been placed and it expected receive supplies before current stock runs out.
India has the third largest number of people living with HIV (PLHIV) in the world at around 2.3 million. The country began providing free antiretroviral drugs in 2004 – initially for first-line treatment, then gradually increased over the years.
This was three years after Indian pharmaceutical major Cipla began producing a generic version of the very expensive cocktail of three drugs that had until then been produced by multinational corporations.
Before that, says activist Loon Gangte, the cost of medicine for a patient was $12,000 (£9,800) a year and “neither governments nor ordinary people could afford it”.
Cipla’s gamble brought costs down to $350 per year – Since then, India has become one of the largest suppliers of affordable HIV drugs to many developing countries, especially in Africa.
But campaigners say many cannot even afford that price, which is why the government’s free drug scheme is crucial.
The Health Ministry said Naco is closely monitoring the stock status of antiretroviral drugs and has reviewed the current situation. He also reiterated his earlier statement that there was enough supply of TLD tablets – the only generic HIV combination drug taken by 85% of patients – to last for three months.
“Additionally, there is sufficient stock nationwide for about 95% of patients in India who are on various 1st and 2nd line treatments. [anti-retroviral] diets,” he added.
But Manoj Pardeshi, who works with another group of PLHIV, says even if a person does not have access to life-saving drugs, it is unacceptable.
“Many have been told to buy their medications from pharmacies,” he says, adding that the problem is mainly faced by people who are not on the TLD diet and children who need pediatric medications.
Dr Ishwar Gilada, who opened India’s first AIDS clinic in 1986, says a 15-20 day disruption may not be that bad, but the current supply disruption is worrying because it’s been going on for a few months.
“Once the supply resumes, there will be chances of people developing drug resistance if they cannot regularly access the three-drug combination they need to take,” he says, pointing out that the India does not do resistance testing to determine if a patient has stopped responding to certain medications.
“Apart from that, it also affects people’s faith. It should not be the patient’s responsibility to find the medicine,” he adds.
It’s not the first time that suspected supply disruptions have cut off access to HIV drugs – patients have been through a crisis in 2014. There have been other cases over the years.
Dr Gilada blames a “tedious” procurement process that offers little incentive for companies to participate, especially when margins are low.
“India has come a long way in the fight against HIV over the past decades. Without India, the global situation would also have worsened,” he says.
“We did a lot of things well, but we also have to do a lot better.”