Global agencies to groups in India – national and state networks – have officially written to the government of India to end stockouts of HIV lifesaving medicines and dispense a minimum one-month supply to over 1.6 million people who are on this treatment in India. Today as on 28 August 2022, it is the 39th day of the indefinite stir day-night going outside the office of India’s AIDS Programme in the national capital Delhi.
New Delhi, 28th August 2022. Several networks of people living with HIV are pouring in support of the ongoing indefinite sit-in (since 21st July 2022) outside offices of India’s AIDS programme, to demand an end to the stockout of HIV medicines, and ensure a minimum one-month dispensation of these medicines nationwide.
The government of India’s guidelines of 2018 state that those persons stable on HIV therapy should get a three-months supply of these medicines. But the ground reality is that people in several states are getting 3-10 days supply or children getting medicines for adults or vice versa.
This indefinite stir began on 21st July 2022 with Delhi Network of Positive People (DNP Plus) activists leading the crusade to end stockouts of essential medicines. These networks that have written support letters for DNP Plus and submitted to the Government of India include the Global Network of People Living with HIV (GNP Plus), National Coalition of People living with HIV (NCPI Plus), Manipur Network of Positive People (MNP Plus), Global Alliance for Human Rights, among others. The national professional association of HIV medical experts and researchers (AIDS Society of India – ASI) have also written to the Government of India’s Prime Minister, Minister of Health and Family Welfare, and National AIDS Control Organization (NACO), supporting the above demands.
Since the first HIV clinic was opened by AIDS Society of India (ASI) co-founder and President Dr Ishwar Gilada when the first case got diagnosed in India in 1986, India has come a long way in reducing the number of new HIV infections, as well as scaling up lifesaving (and lifelong) antiretroviral therapy to around 1.6 million people.
“The gains made by India in the fight against AIDS can be lost if drug supplies are not stable. There is ample scientific evidence to show that when a person is stable on antiretroviral therapy and virally suppressed, she/he/they will have the same life expectancy as an HIV-negative person of the same age in a similar context. Antiretroviral therapy prevents HIV-related illness and disability and saves lives. Antiretroviral therapy also has a prevention benefit. The evidence is now clear that people living with HIV with an undetectable viral load cannot transmit HIV sexually (undetectable equals untransmittable or UequalsU). According to the UNAIDS and WHO, HIV treatment works best when taken as prescribed. Missing doses and stopping and re-starting treatment can lead to drug resistance, which can allow HIV to multiply and progress to disease,” wrote Dr Ishwar Gilada, national President of ASI and Governing Council member of the International AIDS Society (IAS).
Continuous supply of ARVs is non-negotiable
Sbongile Nkosi, Co-Executive Director of the Global Network of People living with HIV (GNP Plus) wrote: “The ARV treatment is our one and only lifeline and its continuous supply is non-negotiable as the first tier of our rights to health as a human being and therefore the situation currently faced by our people living with HIV friends in India is unacceptable and undermines people’s rights to accessing the care they need.”
She added: “It is extremely disappointing to see the lack of effective actions taken by NACO in handling the antiretroviral medicines’ shortage crisis, noting the danger of replacing the antiretroviral regimens for thousands of people living with HIV without considering HIV viral suppression, antiretroviral uptake history as well as adequate treatment counselling. These actions have brought additional risks for persons with HIV to achieve successful treatment outcomes and will jeopardize investment from Indian government and donors in saving the lives of people living with HIV in India.”
Sbongile Nkosi also warned that “moreover, once antiretroviral medicines’ supply resumes fully, there will be chances of people developing drug resistance due to inability to access antiretroviral combination regularly.”
Naresh Chandra Yadav, President of the National Coalition of People living with HIV in India (NCPI Plus) wrote: “Since last few months, the community is witnessing the stockout or shortage of paediatric and few adult antiretroviral medications. The quality of life of people living with HIV and treatment outcomes are only ensured when the uninterrupted supply of antiretroviral medicines is ensured.”
NCPI Plus leader Naresh Chandra Yadav also offered “We also request NACO to form a committee (which should include people living with HIV) to meet every quarter to oversee and ensure smooth and timely supply of all essential commodities.”
L Deepak Singh, President of Manipur Network of Positive People (MNP Plus) wrote to the Indian government that the life of people living with HIV who are human beings, “depends on a regular dose of antiretroviral medicines taken every 12 or 24 hours on the dot without fail. They are being denied their fundamental right to health, and being pushed to the jaws of death by no less than NACO and State AIDS Control Societies which are flouting their own guidelines and rules.” Government guidelines recommend dispensing 3-months’ supply of medicines every time a person visits an antiretroviral medicine dispensing centre.
L Deepak Singh added: “Some people living with HIV are being handed out just 5-10 days of antiretroviral medicines, forcing them to visit the antiretroviral therapy centres, 3-6 times a month. On the other hand, some or almost the majority of the persons living with HIV have had their regimens changed – without following any scientific protocols and without undergoing any prerequisite test like viral load etc – due to the unavailability of certain antiretroviral medicines, which were out of stock.”
L Deepak Singh rightly said that despite pouring in reports from different states of India of stockouts or shortages of antiretroviral medicines, “the official response of NACO and State AIDS Control Societies is that, ‘there is no stockout of antiretroviral medicines. We demand justice for the marginalised people living with HIV whose lives hang in balance.”
Hari Singh, Vice Chairman of Global Alliance for Human Rights, India, wrote to the government: “Due to the stockout issue, lives of many persons living with HIV including children are in danger as they cannot afford these drugs, and due to this, many are added to the ‘Lost to Follow Up (LFU)’ list and many are facing serious life-threatening illnesses. This will also affect the prevention efforts.”
As on 27th August 2022, it has been 38-days and nights of non-stop sit-in that people living with HIV have steadfastly staged outside the offices of the national AIDS programme of the government of India in the national capital Delhi.
Keep the promise
The government’s own promise to end AIDS and the 95-95-95 goals of 2025 will not be met if the basic demands of people living with HIV are not met. Uninterrupted supply of HIV medicines is one of the essential cog-in-the-wheels to help people adhere to the lifelong and lifesaving antiretroviral therapy, stay virally suppressed, live fully and healthily, and become untransmittable as undetectable equals untransmittable. But if supplies are intermittent or supply chain issues continue to plague India’s AIDS programme, then how will we deliver on the promise to end AIDS in the next 100 months (by 2030)?
(Bobby Ramakant is the Editor of CNS (Citizen News Service) and a World Health Organization (WHO) Director General’s WNTD Awardee 2008.