The Global Accountability Platform (COVID GAP) blog series.
March 30, 2023
By Nellie Bristol

When Charonda Johnson’s 62-year-old father died from a COVID-19 infection in July, 2020, in addition to intense grief, she felt rage. A US Air Force Iraq war veteran, she was acutely attuned to early warnings about the unfolding pandemic and urged her family to take precautions. But the church her parents attended downplayed the threat, ignored mask mandates, and continued to hold regular services. Although, unlike the bulk of the congregation, her parents wore masks, they continued to attend services and church sponsored conferences, including those she later found out also were attended by some infected with COVID-19. “They were listening to the things that were being said in the media, listening to things they were hearing in church. They believed their pastors. So my parents didn’t really have the same sense of urgency that I did,” Johnson said in an interview with COVID GAP. Although healthy and with no underlying conditions, Johnson’s father contracted the disease a week after her parents sang at a church conference and died less than a month later.

“I was broken into a million pieces,” Johnson said.

In addition to dealing with her father’s death, she was angered by messages in the media, from the President, and church leaders minimizing the pandemic. Seeking solace and determined that her father’s death not be ignored or in vain, she began reaching out to others who had lost loved ones to COVID-19, eventually connecting with visual artist Suzanne Firstenberg’s white flag memorial. “It was the first place I went where I had any form of peace,” she remembered.

Realizing how many others also were stuck in a cycle of anger, grief, and disillusionment as the pandemic took thousands more lives, Johnson connected with COVID Survivors for Change, a nonprofit organization focused on providing support for those impacted by the disease and advocating for better pandemic preparedness. Working with founder and executive director Chris Kocher, a Duke law school graduate and veteran of gun violence prevention advocacy, Johnson found a purpose for her anguish and became the organization’s Strategic Partnerships Manager. By channeling loss into action, COVID Survivors for Change can hold governments accountable for response failures, advocate for support for those left behind, and urge better preparedness for future health emergencies. Johnson appeared on a Pandemic Action Network panel March 22 along with others from the UK, Spain, and Kenya who all are working to improve government accountability for pandemic response.

COVID Survivors for Change’s first charge is helping those impacted by COVID to heal through ongoing support groups and mental health services. COVID-19 provided multiple levels of trauma, Kocher said, in ways that are even worse than those suffered by gun violence victims. “As awful as a shooting was, people were able to have funerals, they were able to be together in person, they were able to count on those grieving rituals that so many people had taken away from them, especially in the early months of the pandemic,” he said. “That, I think, froze people’s grief and trauma in a very different way even than something as awful and traumatic as gun violence.”

In addition to personal support, COVID Survivors for Change offers trainings to help people take their COVID-19 stories to local and federal lawmakers to push for more effective policies. Among major policy drives, the organization lobbies for financial support for COVID-impacted families, disability eligibility and care options for those with long COVID, and memorials to commemorate those lost to the pandemic. To better prepare for future emergencies, the organization supports efforts to study the nation’s response to COVID-19, national paid leave legislation, and efforts to ensure equitable distribution of health services, vaccines, and medical countermeasures.

In addition to lobbying at the federal level, COVID Survivors for Change also is active in states where it has had several recent successes. For example, COVID Survivors were vocal advocates for a measure California approved last year to set up trust funds for children from low income families who have lost a parent to COVID-19. Further, the group helped usher in paid family leave in Johnson’s home state of Delaware, a victory Johnson said was one of the sweetest. “I cried tears of joy because it clicked in my head that if my family had just had paid time off when all this was happening with my dad, it probably would have been a far less traumatic experience,” she said.

While the rest of the country might want to move on from COVID-19, families suffering through lost loved ones and lingering disability will long bear the scars. Their stories provide the lived experience and passion necessary to ensure survivors receive the financial and emotional support they need. They also provide real life reminders to lawmakers of the need to urgently enact pandemic preparedness policies that will protect constituents from similar suffering in the future.

The Duke Global Health Innovation Center is a proud partner of the COVID Global Accountability Platform (COVID GAP). The COVID GAP blog aims to provide thoughtful, timely analysis and insights on important news and developments, guided by our ongoing research, analysis, and stakeholder engagement.

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COVID-19 Anguish Channeled into Survivor Support, Push for Better Pandemic Policies