Community networks playing a central role in ensuring access to HIV treatment during India’s COVID-19 lockdown

Special report on the community response in one of the world’s strictest lockdowns
Deliveries to people with HIV. Image credit: Delhi Network of Positive People

When food delivery services are considered ‘essential’ during the lockdown, why is an uninterrupted supply of HIV and hepatitis C medicines not treated in the same way, asks Loon Gangte of the Delhi Network of Positive People (DNP+)? “Antiretroviral therapy is lifesaving for us, it is our lifeline and non-negotiable,” he asserts.

Activists from HIV-affected communities across India have been proactive in maintaining access to antiretroviral therapy (ART) during one of the world’s strictest and largest coronavirus lockdowns. For example, the National Coalition of People Living with HIV (NCPI+) has helped over 45,000 people living with HIV to have their ART delivered at home.

On 22 March, India observed a curfew between 7am and 9pm in order to contain the spread of the new coronavirus. Two days later, the Indian Prime Minister announced a nationwide lockdown, just four hours before it came into force. Under the lockdown, “stepping out of the house unless for an essential purpose” became a punishable offence. Public transport came to a halt, travel between states and districts was strictly restricted, most businesses were closed and public gatherings were banned. Millions were thrown out of work, with many migrant workers struggling to reach their home villages.

Glossary

second-line treatment

The second preferred therapy for a particular condition, used after first-line treatment fails or if a person cannot tolerate first-line drugs.

loss to follow up

In a research study, participants who drop out before the end of the study. In routine clinical care, patients who do not attend medical appointments and who cannot be contacted.

log

Short for logarithm, a scale of measurement often used when describing viral load. A one log change is a ten-fold change, such as from 100 to 10. A two-log change is a one hundred-fold change, such as from 1,000 to 10.

isoniazid

An antibiotic that works by stopping the growth of bacteria. It is used with other medications to treat active tuberculosis (TB) infections, and on its own to prevent active TB in people who may be infected with the bacteria without showing any symptoms (latent TB). 

Medicare

In the United States, a federal health insurance programme that guarantees health coverage for people aged 65 and over and some younger people with disabilities.

There was little time to plan and organise essential services, including for India’s 1.4 million people taking ART (out of an estimated 2.1 million people living with HIV).

Planning and preparation

More than a week before the lockdown, the Delhi Network of Positive People (DNP+) had written to the National AIDS Control Organization (NACO) and National Viral Hepatitis Control Programme, the leading government agencies within the Ministry of Health and Family Welfare, to know their emergency contingency plans in case of a possible lockdown, with a focus on ensuring an uninterrupted supply of lifesaving HIV and hepatitis C medicines.

“Hospitals may remain open but how will a person reach there?” asked Loon. This was exactly the challenge, with ART centres remaining open but people struggling to reach them to get their medication.

Manoj Pardesi, General Secretary of the National Coalition of People Living with HIV (NCPI+) told aidsmap.com that they began planning three days before the curfew was imposed and held online meetings with NACO officials to raise their concerns about service delivery. “We concluded with NACO that any person living with HIV should be able to receive medicines from anywhere across the country if a lockdown situation happens,” Pardesi said.

A day before the lockdown was announced, NACO wrote to the State AIDS Control Societies (SACS, the government bodies which implement NACO programmes at the state level), sharing guidance on service delivery. This recommended, subject to drug availability, multi-month dispensing of ART for those who are stable on first- and second-line therapy, as well as of isoniazid and cotrimoxazole preventive therapies. Multi-month dispensing was also recommended as a one-time measure for people who are unstable on ART, provided they are given additional information and counselling.

NACO also asked services to provide condoms and syringes in quantities that will cover two to three weeks. Opioid substitution therapy should be given for at least seven days at a time.

HIV-affected communities have played an important role delivering ART to people who were not able to collect it themselves. Members of the NCPI+ log problems on a daily basis and work out local solutions, such as using government ambulances, their own vehicles, or mobilising help from others to get medicines or food delivered to those in need. There is a WhatsApp group connecting NACO, SACS and NCPI+ members to help with co-ordination. As a result, NCPI+ has helped over 45,000 people living with HIV in India to get home delivery of ART.

Overcoming travel restrictions

People who are in the streets or travelling are liable to stopped by the police, so need to have passes issued by government agencies to allow them to continue to move about. Although the police should allow people showing their green book (HIV care and treatment record) to go to ART centres, there have been incidents in which the police have torn up the green books of people living with HIV or refused to let them pass. In such cases, advocates have intervened with the district magistrate or police commissioner. The activists and community members who are helping deliver medicines have also needed to get passes, usually from their State AIDS Control Society (SACS). 

Three-month supplies have been given to those on first- and second-line treatment, but those on third-line therapy are only getting medicines for 15 days at a time. Moreover, raltegravir, one of the third-line medicines is heading towards a stockout as the active pharmaceutical agent comes from China and manufacturing has come to a halt. In Pune, Maharashtra, a community pharmacy managed by people living with HIV in partnership with a pharmaceutical company (the TAAL pharmacy) has stepped up to provide third-line supplies. Implementation of the latest NACO guidelines recommending transitioning all people on raltegravir-based regimens to dolutegravir-based regimens has been accelerated.

NACO told states to allow patients to get their medication during the lockdown from any ART centre in the country, even if their residency is registered elsewhere. This has eased the situation for migrant workers and individuals who were travelling when the lockdown was announced. However, most ART centres only stock first- and second-line therapies, with many people needing to travel hundreds of kilometres to a centre providing third-line ART.

"Loon Gangte of DNP+ has been on the road for eight to ten hours each day."

It has taken great efforts and co-ordination to get drugs to patients. Manoj Pardesi gives the example of a person on third-line ART who was in Indore (Madhya Pradesh state) but relied on Mumbai (Maharashtra state) for medication. The patient contacted the local ART centre which connected him to the NCPI+. The Maharashtra state government helped transport the medicine 780km from Mumbai to Nagpur city near the border between the two states. Next, an NCPI+ member brought the medicine from Nagpur to the state border, where it was collected by the SACS of Madhya Pradesh and transported the last 400km to the person in need.

A week before the lockdown, the Delhi Network of Positive People (DNP+) put up posters with helpline numbers offering help getting medication. DNP+ also negotiated the price of medicines and secured a supply of first, second and third-line regimens as a backup contingency. The offices were closed and all team members were encouraged to work from home, except three volunteers who got special passes from the authorities in order to deliver HIV and hepatitis C medicines.

Loon Gangte of DNP+ says that since then he has been on the road for eight to ten hours each day. “We have to practice strict prevention measures to protect ourselves as well as our families from coronavirus,” he told us. “When I return to my home, I go straight to the balcony and take out my helmet, jacket, shoes, gloves, keys, bag and other things, sanitise them and leave them in the open for sunlight exposure. I wash my hands as per protocols and take a proper bath before going around my home.”

Local responses

The Gujarat State Network of People living with HIV (GSNP+) formed a task force as soon as the lockdown happened to take stock of the rapidly evolving situation. With support from Alliance India’s Vihaan initiative, outreach workers and volunteers followed up with people to know whether they can move around and reach an ART centre, their current location, drug stocks, and the nearest point of contact. With the help of SACS, medicines were delivered to the block level (a district sub-divisional area) making it relatively easy for most people to collect them from a health centre not very far from their homes. For those who were not able to collect their medicines, community members stepped in to provide home delivery. However, the supply of ART has been particularly difficult in hard to reach areas.

Volunteers packing medicines for delivery at an ART Centre. Image: Gujarat AIDS Prevention
Volunteers packing medicines for delivery at an ART centre. Image: Gujarat AIDS Prevention

Daxa Patel of GSNP+ points out that some people who had been ‘lost to follow up’ called the helpline to get back on ART and strengthen their immune function due to the threat of COVID-19. Also, some who had been not regular with their medicines became more adherent to treatment. She calls this is a blessing in disguise.

Daxa shares an incident where a woman went to Pune in the neighbouring state for family reasons and got stuck there due to the lockdown. Her family in Pune was not aware of her HIV status, so she was reluctant to leave the home for several hours to find the ART centre and get her medication. The NCPI+ helped deliver the medicines directly to her in the neighbourhood where she was staying.

Jogendra Upadhyay from Gujarat AIDS Prevention (GAP), underlines that those receiving third-line ART faced serious challenges as it is only dispensed from four centres across the state, with people given 10-15 days of drugs due to the shortage of raltegravir. GAP volunteers are delivering ART to within 1-2km of where the person is staying (to maintain confidentiality) and are helping in 16 ART centres to pack medicines.

The private sector

Dr Ishwar Gilada, President of AIDS Society of India (the nationwide network of HIV medical experts) told us that people who were receiving HIV care in the private sector are also not able to access regular services and get their medicines due to travel restrictions. Between 100,000 and 200,000 receive ART in the private sector.

“Courier services are severely impacted and majority of them are not working,” he said. “Couriers’ packages containing medicines that were sent a couple of days prior to the lockdown are still stuck as trains, airlines and cargo carrying trucks stopped operations from March 24, 2020.”

“During pandemics, it is even more important to ensure health security for everyone, which includes people living with HIV."

One of his patients managed to get a curfew pass from the police allowing him to travel 600km by car to the Unison Medicare clinic in Mumbai to collect his medicines. Gilada gave him medicines for some other people too who were living in towns which were on his way back. Another patient travelled 400km by motorbike. Representatives of pharmaceutical companies have volunteered to deliver medicines, including those produced by other companies.

Four days after the lockdown began, the AIDS Society of India, the National AIDS Control Organization and the State AIDS Control Societies met to find ways to ensure uninterrupted ART supplies to patients in the private sector. NACO repeated to SACS that all steps should be taken so as not to deprive any person living with HIV of ART, emphasising that the private sector is an integral part of the healthcare system of India.

NACO directed all SACS to register and provide ART to any person who had been receiving it from the private sector as a one-time measure, or to those who are stranded and need the medicines. While Dr Gilada welcomed this, people will only be able to get the medicines which the SACS have in stock and not necessarily what they are currently taking.

“Along with all essential measures to check coronavirus, it is equally essential to ensure that drug supplies remain uninterrupted for all those whose lives depend on them,” Loon Gangte of DNP+ and International Treatment Preparedness Coalition (ITPC) reminds us. “During pandemics, it is even more important to ensure health security for everyone, which includes people living with HIV. We cannot reverse gains made in scaling up HIV care in moments of crisis."