A new investment from the Balvi Fund, a scientific investment and direct gifting fund supporting high-value COVID-related projects, will bring cutting edge communications science to the work of people living with long COVID and other chronic conditions.
Strategies for High Impact (S4HI), founded in January 2022 by disabled and chronically-ill public health advocates and communication strategists, will launch and lead the Long COVID Communications Resource Project, a public health project centered on building public awareness, trust and investment in evidence-based solutions.
S4HI’s diverse and experienced team of public health strategists, communicators, researchers and digital journalists will develop data-informed communication and narrative strategies, provide clear, reliable and actionable patient-led information and perspectives, and support communicators living with long COVID and associated conditions. Many team members are living with long COVID, associated conditions or other chronic conditions.
“Clear and effective communication is the cornerstone of work to overcome the COVID-19 pandemic and addressing its chronic effects,” said S4HI co-founder Gabriel San Emeterio, LMSW, a disabled social worker and policy advocate who is living with HIV, ME/CFS and fibromyalgia. “We thank the Balvi Fund, which is supporting vital scientific research and technological innovation on COVID-19 and long COVID, for also recognizing the intense need for accessible, accurate and timely information by and for those who are living with long COVID and its many associated conditions.”
Long COVID is estimated to affect well over 100 million people worldwide. COVID-19, like many pandemic viruses including polio and HIV, can lead to ongoing disability; cognitive, neurological and organ damage; and complex chronic conditions, including mast cell activation syndrome (MCAS) myalgic encephalomyelitis (ME/CFS), and postural orthostatic tachycardia syndrome (POTS) and other forms of dysautonomia.
Long COVID can occur with initial COVID-19 infection, or arise or worsen through subsequent re-infection. Though rates may be highest in women, older adults, those who had severe illness in acute COVID-19, and disabled and chronically ill people, long COVID can affect unvaccinated and vaccinated individuals of all ages, genders and health statuses.
For most people with long COVID, information about diagnosis, associated conditions, addressing symptoms, and accessing care, treatment or support is scarce and hard to understand. The number of people living with long COVID will continue to grow as long as the COVID-19 pandemic persists; communications strategies led by and for those most impacted are essential to an effective, sustainable response to an urgent public health priority.
The public health project will draw attention to evidence-based solutions and inspire public trust and investment, fostering conditions needed to scale up measures to address the acute and chronic facets of COVID-19 and arm the global community to prevent future pandemics. The project will also create, collect and distribute accessible, accurate and timely information and support for people living with long COVID and associated conditions (LCAC) themselves.
“Long COVID, like many other infection-associated conditions, is often described as mysterious and unexpected. We are ready to correctly reframe this widespread syndrome as a knowable, solvable problem that requires strategic and equitable use of resources,” said S4HI co-founder JD Davids, a disabled communication strategist, digital journalist and research advocate who is living with ME/CFS and long COVID. “Using data-based approaches to effective and accurate messages about COVID-19 and long COVID, we can shift narratives about the pandemic. This will pave a path to outcomes needed by millions worldwide: a full range of research, treatment, care and support for people with long COVID and associated conditions.”
About the Long COVID Communication Resource Project:
S4HI will anchor global public health efforts through data-informed communication and narrative strategies, provide accurate and timely patient-led information and perspectives, and support communicators living with long COVID and associated conditions. The project seeks to bring about widespread, sustainable adoption of structural, biomedical and technological advances for the prevention, treatment and care of COVID-19, Long COVID and associated conditions, by:
Using communications science to develop and share the most effective strategies on addressing and overcoming COVID-19 and long COVID and associated conditions (LCAC).
Creating and delivering public health information to the growing global population living with LCAC.
Distributing original and curated written, video-based and audio content through a central digital platform, offer webinars and online education programs, and provide an open source, multilingual toolbank of adaptable content.
Supporting international cohort of people with LCAC with custom, accessible training as effective, skilled communicators for high-impact communication opportunities.
Providing timely and accurate updates, expert opinion and open source materials to media outlets.
About Strategies for High Impact (S4HI): S4HI is dedicated to building the power of disabled and chronically-ill people (including those with complex chronic conditions such as long COVID). We bring vital perspectives, groundbreaking programs and proven capacity to policy, research and advocacy efforts. We manage the Network for Long COVID, which strengthens networks of people with long COVID and associated conditions, building collective efforts and campaigns for research, healthcare, the caring economy, and racial, social, economic and disability justice. S4HI was incubated and is fiscally sponsored by Springboard Health Labs, a public health project incubator for big ideas that aim to improve health equity across communities.