Were people the missing link in Covid response?

Highest level of political leadership in Covid response is indeed unprecedented if we look at other health responses such as those for HIV, non-communicable diseases, TB or other communicable diseases that affect our lives. But were people having any voice in helping shape the response to the corona virus pandemic? To what extent did governments adapt important game-changing learnings over the past decades from several other health and development struggles?

Incidentally, a few days after the world celebrated Juneteenth to mark end of slavery, a Webinar hosted by International Antiviral Society (IAS) USA had put spotlight on “Nothing Without Us: Civil Society Solutions to the COVID-19 Pandemic”. Inequities and social injustices that have plagued most of our population, has only allowed tiny number of rich elites to amass enormous wealth and power. When the public health emergency ensued with the spread of the corona virus, these very inequities and social injustices not only got exposed but were dangerously pronounced thereby crippling the response.

Jim Pickett, co-founder of International Rectal Microbicides Advocates and Senior Director of Prevention Advocacy at the AIDS Foundation of Chicago, who was moderating the session, said that biomedical strategies to diagnose, prevent, and treat COVID-19 are urgently needed, and efforts to rapidly develop these tools are underway worldwide. Accelerated research enhances the need for civil society input to ensure ethical development and access to these tools worldwide to ensure social justice. In this context, community engagement necessitates innovative structures, mechanisms, and actions, said Jim while explaining the key role for the COVID Advocates Advisory Board (CAAB) which currently connects over 125 people worldwide. CAAB’s efforts are directed towards the achievement of social justice, health equity and the defense of human rights, said Jim.

Social and racial injustices and inequities that COVID has brought to the forefront has also resulted in the grim reality that many racial and ethnic communities are at heightened risk of getting sick and dying from COVID, such as, people of colour. These social determinants of health have historically prevented them from having fair opportunities for economic, physical, and emotional health.

Rob Newells, Director of National Programmes for Black AIDS Institute, said that they rose to the challenge early in the pandemic. Interventions like delivering groceries to the people in need, and more importantly, getting the right information to the communities also became a priority. “Each one, teach one! It boils down to empowering others to tell the stories,” Rob said, who is doing his best to ensure that people themselves become the messenger and harbinger of right information that empowers them and their fellow beings.

Rob also commented on vaccine hesitancy or medical mistrust that affects the response to COVID. “Our role is to honestly answer every single question so that people are informed enough to make the right decision” he said. “People will listen to folks they trust”. Guilt or shame had also affected people living with HIV, but sadly we have not learnt much from the HIV response because people with COVID are also dealing with these issues.

Rob Newells said that we should not lose good interventions that came up during COVID such as implementation of telehealth for primary healthcare as well as for mental health. Broadband internet access everywhere and for everyone should also become a priority.

Top-down responses by governments fail to leverage the resilience and power of communities to play a role in shaping an effective response to a problem that affects them most. “It is important to recognize the power of communities when they take ownership of their well-being and realize the value of their agency in shaping solutions to problems. One example is from networks of people living with HIV in India who could foresee a possible lockdown 7-10 days before it got clamped at 4 hours’ notice” said Shobha Shukla, a fierce feminist and development justice leader and founder of CNS (Citizen News Service). “HIV community networks played a central role in ensuring uninterrupted access to HIV treatment during India’s COVID-19 lockdown.”

“Days before the lockdown got imposed, the National Coalition of People Living with HIV (NCPI+) as well as Delhi Network of Positive People (DNP+) had written to the government to know their emergency contingency plans, in case of a possible lockdown, with the intention to ensure an uninterrupted supply of lifesaving antiretroviral therapy (ART) medicines. Even if ART centres remained open, how would people reach there if a lockdown gets clamped? they had rightly questioned” shared Shobha.

The result was that when the lockdown got imposed in the country. the government and communities had worked out a plan for multi-month dispensing of ART, allowing any person living with HIV to get their medication from any of the ART centres, among other key measures. Thousands of people in need got their medicines on their doorstep because of the proactive role played by the communities before, and when, lockdown got imposed in India.

LGBTIQ+ communities in Asia Pacific had to rise when lockdown got clamped in several nations in the region impacting their rights and lives. “We pivoted very quickly to ensure we have evidence from the communities on what is happening on the ground. We were collecting data from April 2020 onwards, that led to over 100 community stories from all across the region,” said Midnight Poonkasetwattana, Executive Director of APCOM (Asia Pacific Coalition on Male Sexual Health). The gap in COVID response was more than just in personal protective equipment (PPE) purchasing for instance or enough emergency funding not being there. The gap was also about livelihoods of people on the ground and range of other humanitarian needs. Needy people went to community-based organizations to seek assistance that is why government should support these community-based organizations to support the most vulnerable people, said Midnight.

Uganda is under total lockdown, said Winifred Ikilai from National Forum of People Living with HIV and AIDS Networks, and a Fellow of AVAC. In previous COVID waves, many people were opting out of healthcare as they could not access food – especially mothers who must get food to take their medications as well, said Winifred. She pointed out how catastrophic cost of healthcare services for COVID in private sector is a major barrier and forcing people to stay home without healthcare. “Everything sems to be crumbling… We had the opportunity to build our capacity, but country seems to have no emergency response plan to COVID” she remarked.

HIV stigma (and internalized stigma or shame) had and continues to force people to not disclose their status. Stigma and discrimination have been a big (and completely avoidable) barrier to accessing HIV healthcare services and other social support systems if any. It was sad to see COVID stigma was rampant forcing some people to either hide their status or not seek services fearing discrimination and judgement. “If we do not end stigma for COVID and HIV we will not be able to make much progress. Moreover, we have to demystify the myths surrounding COVID,” said Winifred Ikilai.

More people have died of COVID this year as of now, than in whole of 2020, said Simon Collins, co-founder of HIV i-Base. He rightly pointed out that even though significant proportion of the population in rich income nations have got vaccinated, but that is not enough as everyone worldwide needs to get vaccinated to have the best shot in decimating the pandemic. Simon reminded us that two decades back HIV activists were calling upon to ensure access to lifesaving antiretroviral therapy, not just for those living in rich nations, but for all the people living with HIV at that time worldwide – “otherwise nothing is going to work in any country – we have to do better.”

(Bobby Ramakant is part of CNS team. Follow him on Twitter @BobbyRamakant or visit www.bit.ly/BobbyRamakant)