‘This is hell,’ say HIV patients as government body stops supply of life-saving drug

Two decades after he started taking HIV medicines, in 2020, Nitin Solanki was put on a regime of a new drug called Dolutegravir. He immediately felt it was “a good drug”. “My viral load reduced after I started taking it,” he said.

Around India, thousands of patients infected with the human immunodeficiency virus, or HIV, which causes the acquired immune deficiency syndrome, or AIDS, made a similar switch to Dolutegravir, described by some doctors as a “miracle drug”.

But the patients now find themselves left in the lurch.

In the past two months, Solanki, whose name has been changed to protect his identity, has been visiting the local antiretroviral centre in Thane, the city adjoining Mumbai where he lives, only to return empty handed. There is no stock of Dolutegravir.

“Supply issues keep happening once every few years. It lasts for two or three months. But this time it’s been six months,” he said.

Having lost his job as a machine maintenance technician in the pandemic-induced upheaval of 2020, Solanki lacks an income and cannot afford to buy Dolutegravir on his own. He is entirely dependent on free medicines disbursed at government-run centres, which typically get their supplies from the National AIDS Control Organisation.

“I have started fighting with officials to get us the drug,” he said. “When the government campaigned for HIV and asked people to get tested, they promised to provide us with treatment. Where is that commitment?” he asked.

The acute shortage of Dolutegravir, and some other drugs used in HIV treatment, has forced government-run antiretroviral centres in Maharashtra, Mizoram, Nagaland to either stop supply to patients or move them to a different drug regimen. Assam and Manipur have asked patients to buy medicines and decided to reimburse them based on receipts.

Experts fear that this may push several patients to drop out of the treatment.

The shortage

In 2018, the World Health Organization recommended Dolutegravir as the first and second line of treatment after studies showed that the drug drastically reduced viral load in patients, was more effective than other drugs, and had fewer known side effects.

In 2020, the National AIDS Control Organisation, or NACO, introduced Dolutegravir in the national programme. The treatment regimen of several patients was replaced with Dolutegravir.

“In small samples we found that it (Dolutegravir) led to viral load suppression in 95% patients, which meant the HIV virus count was reducing in their body,” said Dr Shrikala Acharya, Additional Project Director, Mumbai Districts AIDS Control Society. Acharya said that the antiretroviral was labelled as a miracle drug in HIV treatment by various doctors.

Dolutegravir along with several other antiretroviral drugs is procured by NACO and supplied for free through antiretroviral centres. NACO buys a single tablet of Dolutegravir for Rs 6.67 (excluding Goods and Services Tax). The same tablet cost Rs 117 in the market.

The drug is procured through the Central Medicine Services Society, a government department that does bulk purchasing for the health ministry.

A NACO official, requesting anonymity, said that on December 9, the tender for antiretroviral drugs was published and six bidders applied. “The pre-bid committee approved one bidder, but later he was found to be blacklisted,” said the official. “Eventually though it was not required, a second bid was called. The technical specifications were changed in the tender,” the official said. The second tender was floated in April.

The delay in awarding a bid forced NACO to ask states to procure drugs on their own twice in the last six months. The official said they considered calling for a short tender, in which a smaller quantity of drugs would be procured faster to provide temporary relief to patients. “But even that was taking time,” the official said.

A senior official from the NACO said the delay in procurement may last for a few more weeks or even months due to multiple “technical hurdles” in the procurement process.

The official said they are considering switching to Government e-Marketplace, an online portal for public procurement. “But there are technical difficulties with that as well. Until the process is ironed out, the supply issue may continue,” the official said.

Few options, limited funds

Faced with the shortage of crucial HIV drugs, states began to look for alternative arrangements in December. Maharashtra, with an estimated 3.90 lakh population with HIV, asked its antiretroviral centres to procure drugs at the local level since a tender at state level was taking time. “Since most pharmaceutical companies are headquartered in Maharashtra, we were able to procure drugs at the same rates as NACO,” said Dr Pramod Deoraj, Maharashtra state coordinator for HIV.

But several states failed to strike similar deals. Unable to procure the drugs on their own, they have sought help from non-profit organisations and corporations, in some cases tapping into Corporate Social Responsibility funds to buy drugs at higher rates.

“NACO buys in bulk. We buy small quantities and the pharma companies do not offer such discounted rates to us,” said a senior official from Mizoram State AIDS Control Society. We don’t have additional funds in the state budget for HIV.” Mizoram had to take aid from non-profit organisations to procure antiretroviral drugs. The state has an estimated 21,000 HIV-infected residents.

In Assam, with an estimated 21,000 population with HIV, the government decided to use state emergency funds to pay patients for antiretroviral drugs. Jahnabi Goswami, a health activist who is HIV infected, said Assam found it difficult to get a supplier for small quantities.

“Eventually, the state government asked patients to buy from chemists and said it will reimburse them,” she said. “Those who don’t have money to buy are supported by local NGOs. But yes many may have been missed out from this network,” said Goswami. Manipur too switched to this process.

In March this year, several states began pressuring NACO to supply stock. In April, NACO asked states to again purchase certain drugs for three months.

“The delay in supply is prolonged this time,” said Deoraj, Maharashtra’s nodal officer for HIV.

Several health activists have blamed NACO for informing states too late.

Lalruatfeli, from Mizoram State Network of Positive People, said the delayed directive left Mizoram with no time to procure stock. “Mizoram found it hard to find a supplier who would supply at NACO rates,” she said. “The process of procurement takes time and NACO should have informed earlier. Now there is no stock,” said Lalruatfeli.

Patients struggle

It isn’t just Dolutegravir that is in short supply. On June 15, Mizoram government data showed that at least five medicines used for antiretroviral therapy were out of stock.

This included two types of Lopinavir and Ritonavir combination used for second-line treatment for adults and children, Nevirapine that is used to prevent mother to child transmission, Zidovudine-Lamivudine combination that is used in first-line treatment, and Abacavir and Lamivudine combination used for first-and second-line treatment.

Lalruatfeli said there are three private chemists who supply antiretroviral drugs in Mizoram, but most patients are poor and cannot afford to buy them.

In Meghalaya’s East Khasi Hills, Mervyin Kharpran was diagnosed with HIV last year. He requires a Dolutegravir tablet daily. The 35-year-old truck driver would get medicine stock for a month or two for free from the antiretroviral centre. But since January, the supply has been irregular. “Now they give medicine for seven-10 days, which means I have to take a leave and travel 30 km to the ART clinic once every few days,” he said.

While Kharpran is still able to get the life-saving drugs, in Manipur’s capital Imphal, Haobam Nanao is unable to access Lopinavir and Ritonavir, two antiretrovirals used in second-line treatment. The 52-year-old went to the local antiretroviral clinic to collect a monthly stock of four drugs – Abacavir, Lamivudine, Ritonavir and Lopinavir – on June 20.

“They gave me Abacavir and Lamivudine medicine for 39 days and asked me to procure the remaining drugs on my own,” said Nanao. “This is hell for us.” Nanao said these medicines are expensive and required every day. “I only have a week’s stock of Ritonavir and Lopinavir left,” he said.

The antiretroviral centre told Nanao that the Manipur government will reimburse the cost of medicines. But Nanao says he has come across patients who have still not received reimbursement. “If it continues like this, people will stop adhering to treatment,” he said.

Legal action

Nalinikanta Rajkumar, president of Manipur’s Community Network for Empowerment, which helps drug users through de-addiction and with their treatment, said NACO began antiretroviral services in 2004 and should have streamlined the procurement process by now.

“If the government can’t handle such an old programme, it shows their lack of interest in helping HIV patients,” he said.

In Manipur, the State Human Rights Commission issued a notice on June 11 to the State AIDS Control Society over a stock-out at multiple antiretroviral centres. The commission has given three weeks to the state government to respond over reasons for delay in procurement.

Rajkumar said it is supply chain mismanagement by the central government that is affecting HIV-infected patients. “Manipur has a limited budget, they are dependent on the federal government. We are going to file a petition in the high court over the stock-out issue,” he said.

This is the first part of a series on HIV drug shortages. Read the second part here.

This reporting was supported by a grant from the Thakur Family Foundation. Thakur Family Foundation has not exercised any editorial control over the contents of this article.