The February 16, 2022 Corner post, “When COVID Stays for the Long Haul, Part One,” took a deep dive into the phenomenon of Long COVID. As we described last time, Long COVID is a constellation of symptoms which include a range of new, returning or ongoing health problems individuals can experience four or more weeks after first being infected with COVID-19. People with Long COVID experience lingering symptoms. Long COVID can impact anyone who has had COVID-19, regardless of the severity of the initial infection, even if they were asymptomatic. Current estimates indicate that between one out of three people who have had COVID could go on to develop Long COVID, leaving many pressing questions for our long-term COVID recovery.
In the U.S., experts predict that more than 15 million Americans will get Long COVID, and with those cases will come increased demand for long-term health care focused on chronic conditions. To meet this challenge, our health care system may have to pivot from its current focus on acute COVID-19 care to more chronic care and long-term supports. In addition, the COVID-19 pandemic exposed deep-seated inequities in health care access and other public health outcomes, which are factors that determine how we change our health care systems to address Long COVID holistically.
Social and economic impacts of Long COVID
Like all chronic health conditions, Long COVID has far-reaching social and economic impacts on communities who live with this condition.
Feeling sick for months on end can affect an individual’s outlook on life – leading to depression, anxiety and other mental health issues. Long-haulers, as they commonly refer to themselves, may have difficulty communicating these feelings with their support networks or find it challenging to emotionally connect to family and friends.
Suffering from chronic pain or mobility issues often means that people with Long COVID are no longer able to perform in their lives like they once could before contracting COVID-19. This can impact everything from their social life to their employment. If someone is rendered unable to work due to symptoms of Long COVID, they and their families are at risk of ongoing financial hardship. In addition, a person with Long COVID may need a primary caregiver. If a close family member takes on this role, it can further impact the financial stability of the household.
With the emergence of Long COVID, communities who have already been exposed to medical, structural, and interpersonal forms of racism and inequities disproportionately bear the impact of this condition. Throughout the pandemic, we have witnessed the devastating impact that COVID-19 has had on Black and Brown communities, many of whom serve as frontline workers that help to stimulate our economy. Communities of color witnessed their colleagues, friends and loved ones become hospitalized or distressingly, pass away from COVID-19. This heightens their fear in the medical system – a system that has historically disenfranchised these communities through medical gaslighting and neglect – in a myriad of ways.
Natural history of COVID and Long COVID. Image courtesy of NYC Test & Trace Corps.
In response to the city’s growing number of Long COVID cases, in April 2021 NYC Test & Trace Corps’ Take Care pillar launched AfterCare, an innovative public health initiative that connects New Yorkers with or at risk for Long COVID to health, social and financial resources to support their recovery. AfterCare Navigators (ANavs), are health outreach specialists who are trained to refer clients to resources that address their Long COVID needs. ANavs primarily make phone calls to past Test & Trace cases and contacts who live in NYC’s Task Force on Racial Inclusion and Equity (TRIE) ZIP codes. To date, AfterCare has referred over 47,000 people to Long COVID resources. AfterCare will soon move into COVID Navigation, a more comprehensive continuum-of-care model for people who get COVID – from initial infection to long-term recovery.
Take Care’s AfterCare program has three main goals: access, awareness and advocacy
AfterCare’s primary goal is to help individuals and families affected by Long COVID access the resources they need to support their recovery. Below are the four resource categories AfterCare prioritizes and some examples of the services offered.
Physical health resources
NYC Health + Hospitals’ COVID-19 Centers of Excellence
Self-care management techniques
Access to primary care
Mental health resources
Mayor’s Office of Community Mental Health
Body Politic COVID-19 Support Group
The NYC Health + Hospitals COVID-19 Centers of Excellence (“COEs”) are among AfterCare’s most requested resource. The COEs are two comprehensive community health centers in the Bronx and Queens dedicated to those recovering from COVID-19. The COEs offer a wide range of services, including lung care and supplemental oxygen, heart care, mental health care and rooms with special technology to safely isolate patients who are being tested for COVID-19.
The Body Politic COVID-19 Support Group is an online community of more than 11,000 people worldwide who are experiencing Long COVID or recovering from COVID-19. The group, for which there is an application form, provides discussion groups based around a variety of communities and topics, such as groups for caregivers of sick friends or relatives, and groups for medical advocacy, mental health, and employment concerns.
As one of the first citywide initiatives dedicated to addressing Long COVID, AfterCare aims to raise awareness about this condition through outreach and education. By engaging directly with individuals affected by this syndrome, AfterCare is gaining critical insight into the specific needs of this community. It works with clinicians, care providers and the general public to share information and develop best practices, with the ultimate goal of improving access and quality of care. The AfterCare website contains a wealth of information on Long COVID and available resources to support recovery.
There is still much to learn about COVID-19 and the chronic health conditions many survivors face. One thing we do know is that survivor advocacy and patient-led research efforts have advocated for many of the advances in Long COVID care that have been made thus far. AfterCare recognizes the importance of patient voices in the quest to find the best treatments for Long COVID and works to empower individuals to become advocates for their own health.
With an understanding of the structural inequities and racism that our clients have and continue to experience, AfterCare utilizes an equitable and affirming approach; affirming and validating the Long COVID symptoms that our clients experience while providing information on relevant resources. One of the most essential components of this approach is promoting patient self-advocacy, allowing clients to feel a sense of agency when advocating for their unique needs.
As more COVID-19 survivors are affected by Long COVID, the right policies and resources are imperative to support them. AfterCare aims to leverage its position as the first program of its kind in order to advocate for smart, equitable and just policies that prioritize holistic, patient-centered care, medical research and the provision of services that meet the specific needs of those with Long COVID.
Take Care’s Long COVID response has big goals for the future. It will continue expanding and evolving to meet the growing demand for chronic health care supports that has been created by Long COVID and to ensure that New Yorkers have equitable access to the care they need.
If you think you or a loved one may be suffering from Long COVID, please reach out to one of NYC Health + Hospitals’ COVID-19 Centers of Excellence. 24-hour access to a health care provider is available.