People living with HIV demand an end to the drug stock-out: Beginning of the indefinite sit-in
An indefinite sit-in began on July 21, 2022 outside the Indian AIDS Program offices of India’s Ministry of Health and Family Welfare to demand an end to the frequent stock-outs of life-saving antiretroviral HIV drugs. . “We will not end the sit-in in Delhi outside the National AIDS Control Organization office until the government takes concrete steps to end the stock-out and our people in different States in India will not have confirmed that the drugs have reached them,” said Hari Shankar Singh of the Delhi Positive People’s Network (DNP Plus).
“Dolutegravir and some antiretroviral drugs for children are out of stock in several places in India. These life-saving antiretroviral drugs are very important for people living with HIV because they help them live normal, full lives and stay virally suppressed (which also makes HIV undetectable and non-transmissible). In some states in India, drug stock-outs have been happening for five months. In Delhi, some antiretroviral treatment centers only give drugs for three to seven days. In some centers there are no more drugs,” said Manitosh, who has been taking HIV drugs since 2013. He is also part of DNP Plus.
Hari Shankar Singh added, “People in Delhi should be given anti-retroviral drugs for a month, but in several hospitals these drugs are out of stock. As a result, people are given medication for three or four days, which forces them to run to hospitals more often to pick up doses. More out-of-pocket transportation, lost work and lost wages, wasted time, and sometimes that frustration and difficulty coping or adhering to treatment leaves them with no choice but to quit altogether. to take the drugs. In several parts of India, drugs have been out of stock for five or six months.
Taking antiretroviral drugs regularly is vital if one is to stay healthy and virus-free. That’s why they demand that stock-outs stop and that people receive at least a month’s supply of drugs in advance (and not be asked to come back every three or four days for refills).
Hari Shankar Singh has confirmed to CNS (Citizen News Service) that several rounds of meetings and negotiations have taken place with officials of the Government of India’s National AIDS Control Organization over the past five months. But unfortunately, these talks failed to end the stock-outs. This is why the communities of people living with HIV had no choice but to organize an indefinite sit-in outside the offices of the National AIDS Control Organization in Delhi to assert their demands.
Officials from the National AIDS Control Organization met with peaceful protesters demanding an end to drug stock-outs. These officials gave several reasons for the stock shortage or the steps they have taken to resolve the issue, such as the tender or tender process for the purchase of drugs is underway. , or they asked national AIDS societies or government antiretroviral treatment centers to buy drugs in the meantime, or other palliative insurance. But people living with HIV are not convinced by these so-called assurances.
“The HIV virus circulating in our bodies will not listen to these reassurances and pleas, it will not respond to the bidding process or the bidding process or the paperwork or administrative delays. The HIV virus will only respond to antiretroviral drugs if we take these drugs regularly on time,” said Hari Shankar Singh forcefully.
Mona Balani, a recognized HIV activist who has lived with the virus for 22 years and has been taking antiretroviral drugs for 14 years now, also spoke with the CNS. She said, “Not only antiretroviral drugs are out of stock, but even HIV test kits or reagents for CD4 tests are out of stock in some places. »
On the one hand, the government promises to achieve the 95:95:95 targets (95% of people living with HIV must know their status (so they must be tested), 95% of them receive antiretroviral drugs and 95%% of them are virally deleted.
Mona Balani rightly said, “If the test kit is out of stock, how are we going to get pregnant women tested in time? Antiretroviral prophylaxis is sometimes not available to prevent parent-to-child transmission of HIV. How then will we eliminate parent-to-child transmission of HIV? By failing to prevent stock-outs and failing to ensure that medicines and supplies are on hand everywhere, we are instead facilitating the transmission of infection. How are we going to end AIDS in the next 101 months (by 2030)?
Vijay Singh, who is part of the Love Life Society, said that “the government says we need to take medication without any interruptions because adherence to antiretroviral drugs is so important. But failure to prevent frequent stock-outs makes it very difficult for people to join.
Health is a human right
“We demand what is rightfully ours, as a human right. It is our constitutional right to take care of our health and to protect our health and well-being. People must be able to get their HIV drugs on time, and there must be no shortages – this is the assurance we need from the Indian government,” added Mona Balani, who also part of the National Coalition of People Living with HIV. in India (NCPI Plus).
Sahil has lived with HIV since he was 13 years old. He is now president of the Om Prakash Network of People Living with HIV (OPNP Plus) and echoed Mona’s statement that “I am joining the sit-in because getting life-saving drugs is a human right issue. . »
Sadhana Jadon from NCPI Plus has been living with HIV since 2003. She pointed out that “not only us, but even the children are not able to take medication without interruption due to these stockouts. It is a matter of our lives and those of our children as well to ensure that the uninterrupted supply of medicines becomes a reality. Parents of these children often quit their jobs or suffer a loss of pay and repeatedly travel to hospitals to pick up medicine for their children. How many times will they have to make these trips to the hospital to get the drugs? Why can’t they get longer lasting supplies? »
Sadhana Jadon questioned that, on the one hand, the government is rightly saying that it wants to reduce ‘lost to follow-up’ – that is, when people stop taking HIV treatment in between- time. But on the other hand, the government itself is creating a situation such as drug stockouts that will make it very difficult for people to adhere to lifelong treatment.
Jai Prakash, who is part of the DNP Plus team, said that “the government asks us to verify the files, why so many people are getting ‘lost to track’, so we are supposed to visit them and try to bring them back at HIV Care. But are these government people doing their job seriously and sincerely? We have been raising the issue of drug stockouts over the past five months, meeting with officials, writing emails and called them on the phone but now we are so fed up and frustrated some people even had to sell their valuables to buy medicine from the private sector.”
“We are not asking for alms, but our right to seek care and treatment. We are not begging, but demanding what is our due – life-saving medicine. They treat us as if they are obligated by giving us medicine for only a few days,” added Jai Prakash.
Priya, who is part of Love Life Society, said that “one of the responsibilities of the National AIDS Control Organization is to ensure an uninterrupted supply of antiretroviral drugs for people living with HIV across the country. . It exists to do this work among other responsibilities. At least they have to do their part honestly.
India has approximately 2.1 million people living with HIV. If the government is to deliver on its promise to end AIDS by 2030, then it is vital to ensure that every person living with HIV receives antiretroviral treatment and remains virally suppressed – so that undetectable equals untransmittable becomes a reality. We can end AIDS now because we have proven tools and approaches that work.
Bobby Ramakant – CNS (Citizen Information Service)