Facing COVID-19 Unpredictability and Reliving Long Forgotten Feelings of Uncertainty

“The lockdown in India caused an immediate panic amongst the general population, but especially among those who are on HIV and Tuberculosis (TB) treatment, as there was no clarity on how patients could access their medication,” says Mona Balani, the Project Director for Elimination of Mother to Child Transmission of HIV (EMTCT) and Care & Support Programme of National Coalition of People Living with HIV in India (NCPI+). This was despite the government order issued by the Central TB Division of the Ministry of Health of India to continue the provision of TB treatments without any interruption during the lockdown and allowing people affected by TB to access any TB treatment centre closest to them.

Mona has been openly living with HIV since 1999, and was diagnosed with pulmonary TB (TB in the lungs) in 2002, and was diagnosed with abdominal TB in 2006. India accounts for 27% of the world’s TB burden, where 80% of PLHIV have TB, and accounts for one-fourth of the global burden of multidrug-resistant TB (MDR-TB). The World Health Organisation (WHO) statistics for 2018 give an estimated TB incidence of 2.69 million cases. 

“With a mammoth TB burden, COVID-19 could create a catastrophic situation in the TB response in India, with increased TB incidence, lack of access to diagnostics and treatment resulted in increased deaths by the disease,” Mona mulled.

Even though many states have reported fewer TB deaths during the lockdown, it is suggested that the system for tracking TB patients has collapsed. A TB modelling study commissioned by the Stop TB Partnership in collaboration with the Imperial College, Avenir Health and Johns Hopkins University, and was supported by USAID also stressed that India could see large numbers of TB patients on treatment at risk of discontinuing their TB treatment due to challenges in getting medicines and other support services. 

Stigma and discrimination against people affected by TB is pervasive and have been exacerbated by the COVID-19 pandemic. Poverty is a key aspect of TB burden in India despite free-of-charge TB diagnostic and treatment services. As TB disproportionately impacts the poor, COVID-19 has further impacted livelihoods of communities affected by TB trapped in the cycle of poverty who lack financial and social resources to survive the lockdown period, with access to treatment becoming less of a priority for them.

“The impact of COVID-19 on our communities will continue long after the pandemic is controlled, and it is crucial that we ensure our interventions are able to address such impacts,” says Mona.

As a co-founder of NCPI+, a co-founding activist of Touch by TB and a strong advocate for both PLHIV and TB communities, Mona together with the NCPI+ team have stepped in to coordinate both the delivery of Antiretroviral Therapy (ART) for PLHIV and TB treatments. In collaboration with the Vihaan Care & Support Programme (Vihaan means ‘dawn’s first light’, which symbolises a ray of hope in the lives of PLHIV) of the India HIV/AIDS Alliance, Touch by TB and other CBO partners, NCPI+ have so far delivered ART to more than 105,000 people in 10 states, and TB drugs to more than 700 PLHIV who are also living with TB. Furthermore, nutrition and care support have been provided to more than 5,700 PLHIV and over 500 pregnant women who are living with HIV since the beginning of the lockdown.

NCPI+ is a sub-recipient (SR) of the Vihaan Care & Support programme for PLHIV since 2015 and an SR for the EMTCT programme since 2017 both funded through “Vihaan: Enhanced treatment adherence and retention in HIV care through Care and Support services for People Living with HIV/AIDS in India” and the “Strategic Augmentation of HIV/AIDS Services in India (SAHAS)” grants supported by the Global Fund to Fight AIDS, Tuberculosis and Malaria.

“While we focus our energy to respond to emergency needs of our communities, it is also crucial that we protect our community frontline workers,” reflected Mona as two community frontline workers of NCPI+ who were delivering ART, TB drugs and nutrition care have been diagnosed with COVID-19. Mona highlights the need to ensure that community frontline workers need to be provided with personal protective equipment (PPE) and also ensure that health insurance covers any relevant costs, and that they receive adequate compensation for their efforts. In response, NCPI+ has not only provided the necessary support to the families of impacted community frontline workers diagnosed with COVID-19, it has also taken steps to address stigma and discrimination of people affected by COVID-19. Both her colleagues have recovered since and returned home from hospitals, and are continuing their work in responding to community needs. 

“With the lived experience of stigma, discrimination, social rejection and poverty, we are more than able to imagine the hardships of communities who are severely affected by the COVID-19 pandemic. As activists, it is vital that we also make sure that we are safe and protected so that we can continue to serve them,” said Mona.

India is the worst COVID-19 affected country in the Asia-Pacific with 198,706 confirmed cases and 5,598 reported deaths as of 3rd June 2020. The vast geographical area; close to 1.4 billion population; and a fragile healthcare system where families typically pay 80% of their health care costs as “out-of-pocket” expenses according to the World Health Organisation’s “The World Health Report 2000 – Health Systems: Improving Performance” has also meant that tackling the spread of COVID-19 has posed a significant challenge to the Government of India.

Mona revealed that the uncertainty of accessing treatment centres where people affected with TB have been originally registered as a result of the lockdowns have been a major concern among TB affected communities and civil society organisations working with and for TB communities. The countrywide lockdown since mid-March had stranded migrant worker populations in major cities with no or limited options to travel back to their villages. In addition, follow up and access to TB treatment became more challenging as a significant number of migrant workers affected by TB had moved back to their villages.

The coordination and regular communication among all stakeholders remains a critical element of effective interventions during this emergency period to ensure that the affected communities have access to essential health services was emphasised by Mona. “We keep all stakeholders including the government authorities constantly updated on the needs of our communities, and the progress of collective efforts through several WhatsApp groups which help us to deliver more coordinated emergency interventions,” and further stressed the need for internal communication and coordination between civil society and the government authorities to ensure more comprehensive and integrated interventions.

“NCPI+ also operates a coordination call centre, where PLHIV or TB affected people could call us and we support them by coordinating their access to HIV, TB treatment or other health needs,” said Mona, who emphasised the critical role of coordination among different stakeholders in HIV and TB responses – including government authorities, hospitals and clinics to ensure that PLHIV and TB affected communities have uninterrupted access to HIV and TB treatment no matter where they are during the lockdown.

“COVID-19 has brought back the long-forgotten feelings of uncertainty which I initially felt with my HIV positive diagnosis a decade ago, and then with my TB diagnoses. That motivates me even more to work in my maximum capacity to serve our communities,” concluded Mona.