2024 Highlights

As 2024 wraps up, we’re looking back at our accomplishments and looking forward to the critical work that we’ll carry into 2025. Highlights from the past year include:

• Publishing Long COVID Essentials, a series of 30+ resource sheets about navigating Long COVID & associated conditions, created in partnership with The Sick Times. Available in English and Spanish.

• Engaging 10,000+ people in organizing against mask bans via strategic cross-movement partnerships with other groups at the forefront of pandemic justice and civil liberties

• Launching an ongoing dialogue with the U.S. CDC to push for patient and advocate-led recommendations to be incorporated into official guidance about masking, treatment, research, and more.

• Launching the HIV Complexities Project, led by and for people living with HIV & complex chronic conditions, in partnership with Citizens’ Public Health Literacy (CIPHER) project at Columbia University, supporting HIV networks, peer navigators, community health workers, providers and advocates to integrate Long COVID & complex chronic illness into their work.

• Finalizing our NYC Needs Assessment + Action Plan, the first city-level patient-led needs assessment for Long COVID in the U.S., in partnership with CUNY School of Public Health and community partners. Our research-based, patient-led Action Plan will launch in 2025.

• Running our narrative change BIPOC Fellowship and Long COVID Communicators program, providing material and capacity-building support to Black, Indigenous, and people of color activists, artists, and researchers who are living with Long COVID and complex chronic illness.

• Expanding the resources on the Long COVID Justice website to include more information on crucial topics like: overlaps of Long COVID with ME/CFS, impacts of Long COVID in trans communities, finding LC-competent providers, applying to Social Security & other disability supports, connecting with local & online organizing and support groups.

• Creating a digital hub for sharing stories from Listening for the Long Haul, our 2 year long oral history project in partnership with the University of Illinois-Chicago featuring 30+ hours of oral histories conducted by trained Narrative Architects living with Long COVID and associated conditions.

• Partnering on campaigns, education, organizing and outreach with Peoples CDC, ACT UP NY, MEAction, Fight for the Future, Mask Together America, Pan End It!, Peoples Hub, Naming the Lost, Body Politic, A Better Balance, and others.

• Giving interviews with outlets including The Sick Times, Disability Visibility, Clear Health Costs, NPR, National Geographic, Washington Post, Wall Street Journal, and Columbia University student radio.

Project launch: HIV Complexities Project

S4HI is excited to announce our HIV Complexities Project, led by and for people living with HIV (PLHIV) and complex chronic conditions.

The project has a broad reach, and includes:

- A monthly online support group for PLHIV with complex chronic conditions.

- Resources in English and Spanish for PLHIV in our Long COVID Essentials suite of health ed fact sheets.

- Support for national networks of PLHIV, including the central U.S. Caucus of PLHIV, to strengthen their capacity to include disabling complex chronic conditions in their work.

- Curricula for HIV peer navigators, community health workers, providers and advocates, developed in partnership with the Citizens’ Public Health Literacy (CIPHER) project at Columbia University.

- Accessible public health education to provide timely, accurate and actionable information on HIV & complex chronic conditions.

Letter from our co-Director JD Davids

As a longtime organizer for health justice, it is an honor to be a part of disability justice movements and efforts to confront the Long COVID crisis. Today, I am writing to let you know I will be leaving my staff position at Strategies for High Impact and Long COVID Justice at the end of the year, though I will remain an advisor in an auxiliary capacity.

I’m delighted to announce that our co-director Emi Kane will become the director of S4HI and LCJ. She will continue to anchor the organization, along with our communications and narrative work and BIPOC Fellows program. Our senior fellow Gabriel San Emeterio will continue to focus on our NYC efforts and our HIV Complexities Project, Voula O’Grady will continue to manage our resources, digital publications and presence, and community engagement, and Brunem Warshaw will continue to keep things rolling as our administrative and operations coordinator.

It’s a time with many challenges on the horizon. I don’t need to tell any of you how crucial this work is.

I am so grateful to be leaving the project in such good hands, with full confidence that this team, working with our program collaborators and contractors, will not only sustain but expand our vital efforts in the years ahead.

Through our education efforts, communications and narrative work, and organizing and policy work, S4HI/LCJ is rising up for justice and care today, while fighting for the future we all need.

I’m proud of our pivotal work, including our central Pandemics are Chronic statement, the new Long COVID Essentials resource pages (in collaboration with The Sick Times), and our federal and local advocacy efforts including pushing for crucial changes to the NIH RECOVER program. And in the months ahead, I’m looking forward to the release of our action plan on Long COVID in NYC, and a vibrant online hub for our Listening for the Long Haul oral histories (in partnership with University of Illinois Chicago).

This September, I began classes at the City University of New York (CUNY) Graduate Center's Biography and Memoir program. I will be taking time to focus on that work in 2025 — you can follow that endeavor and more at @TheCrankyQueer on Instagram, Twitter (for now), and Substack.

Thanks so much for your support and partnership,

JD
Co-director, Strategies for High Impact / Long COVID Justice

Long COVID Justice presents at Autistic Self-Advocacy Network’s Annual Gala

We’re thrilled to share that our Long COVID Justice project is the recipient of the 2024 Creating Community Together Award from the Autistic Self-Advocacy Network (ASAN). Join us at ASAN’s annual gala for a panel featuring S4HI co-director Emi Kane and other powerful organizers on October 30!

Event info via ASAN:
___________

“Sowing Safety: Cultivating Protections & Weeding Out Harmful Policies During the Ongoing Pandemic” panel

PANEL INFO
As mask bans have continued popping up and pandemic protections are lifted, many disabled people are disproportionately impacted, facing heightened risks in a society increasingly eager to move on from the pandemic. We know that COVID-19 is still an issue. We’ll be joined by experts discussing how to navigate the continual erosion of pandemic protections, the harm caused by mask bans, and what we can do to support and keep each other safer.

PANELISTS
• Emi Kane
• Eiryn Griest Schwartzman
• Ngozi Alston

TIME & DATE
• Weds Oct 30, 3-4:45 PM ET, zoom
• Full gala schedule (3-8pm), panelist bios, & tickets

ACCESS NOTES
• Panel presentations will be in spoken English with CART.
• Format: Panel presentation followed by Q&A.
• Camera optional. No breakout groups. Chat will be open.
• For access requests, contact: info@autisticadvocacy.org
• This session will be recorded. Recording & resources will be shared with everyone who registered, & posted online on ASAN’s YouTube channel.

ABOUT THE GALA
• A night of panels, celebration, and community.
• After the panels, the award ceremony will take place from 7:30-8:00pm ET.
• This year’s theme is Grow With Us — in recognition of ASAN'S growth and a tribute to the power of our grassroots to fight for the rights of our community.
• Everyone’s welcome.
• ASAN asks that gala attendees donate if they are able to do so, but donations are never required to attend.

ABOUT ASAN
The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. Nothing About Us, Without Us!

HIV-Long COVID support group

Long COVID Justice, a project of Strategies for High Impact, is launching a new support group for people living with both HIV and Long COVID.

The group is free to join, but we ask that you to commit to attending all four sessions. We’ll meet every other Thursday on Zoom: October 24, November 7 & 21, and December 5 2024 from 6:30pm – 8:00pm.

If you can’t join on these dates, you can sign up to be informed when 2025 dates are released.

Note: Participants must live in the U.S. (regardless of immigration status).

Learn more and sign up here.

Long COVID Essentials: a new resources series

We are excited to announce Long COVID Essentials, a new collaboration between The Sick Times and Long COVID Justice, a project of Strategies for High Impact.

Over the next several months, we’ll be publishing over 30 resource sheets that provide foundational information about navigating Long COVID. Each sheet can be printed and/or shared as a digital PDF. Whether you’re newly experiencing confusing symptoms, have had this disease for years, or are helping others in your community, Long COVID Essentials will help you support yourself and your community.

This series is designed by and for people with Long COVID and associated diseases. Each resource sheet has been reviewed by people living with Long COVID and/or caregivers, and by medical experts who provide Long COVID care.

In the absence of public health support and guidance from our government and healthcare systems, we hope these resources will support you in taking care of yourself and your community. We’ve seen the attention of the media and leaders wane, funding disappear, and misinformation spread — even as the overlooked impacts of the COVID-19 pandemic and Long COVID crisis remain widespread. And these impacts are hitting hardest in already marginalized communities.

Our work remains as urgent as ever, and we’ll keep bringing information to the fight for pandemic justice and care for all. The stories and experiences of people with Long COVID must be told, believed, and prioritized!

We encourage you to share Long COVID Essentials with healthcare providers, community leaders and organizations, mutual aid groups, on social media, and more.

To stay informed of when new resources are published (and much more!), join our list.

Long COVID Essentials is part of the health education component of our pilot Needs Assessment and Action Project (NYC).

Project news: BIPOC Fellowship and Long COVID Communicators program

Updates from Long COVID Justice’s BIPOC Fellowship and Long COVID Communicators program

As we approach year 5 of this ongoing pandemic, facing the possibility of many more in our lifetimes, we recognize and highlight that pandemics like these have disproportionately impacted already marginalized communities. 

These disproportionate impacts are driven by the ongoing structural marginalization of Black, Indigenous, and people of color and others already politically and structurally marginalized. Our BIPOC Fellowship and Long COVID Communicators program aims to interrupt the marginalization of BIPOC voices in the Long COVID conversation, and to support people living with Long COVID and Associated Conditions (LCAC) to tell their own stories, shift narratives, and participate in advocacy around the issues that impact their lives and communities.
 

This project is currently in its second year, and provides material and capacity-building support to Black, Indigenous, and people of color disability justice activists, artists, and researchers doing work, organizing, and/or who are living with Long COVID and associated conditions. BIPOC Fellows build community and relationships, participate in a fully-funded communications training series, get 1:1 support for publishing op-eds and other writing, and deepen communication and narrative skills, increasing the visibility and power of BIPOC voices in the Long COVID landscape, so that the conversation more accurately reflects those most impacted by LCAC.

Highlights include:

  • Presenting at a webinar with the American Association on Health and Disability

  • Helping to plan and implement advocacy strategies for a meeting with the U.S. Centers for Disease Control (CDC)

  • Sharing patient perspectives with WebMD

  • Presenting about patient experience and disability in various public health and activist webinars and in university classrooms.

  • Receiving a mini-grant for a project titled “Breathing for Justice: Exploring the Intersections between Long COVID and Racial Justice”

  • Publishing essays as part of The Color of Long COVID series by DIsability Visibility and The Sick Times

  • Working with the Narrative Initiative’s WordForce Program to advise on and help draft a Long COVID style guide

  • Training with History Moves at the University of Illinois-Chicago as Narrative Architects for our Listening for the Long Haul oral history project, which has produced 300 hours of oral histories from people living with Long COVID and Associated Conditions (LCAC)

  • Acting as patient reviewers for the Long COVID Essentials, a resource series produced by Long COVID Justice in partnership with The Sick Times

  • Being interviewed for a video series on Long COVID with the World Health Network

  • Interviews and media appearances for: National Geographic and The Wall Street Journal – and much more!

S4HI endorses the Long COVID Research Moonshot Act

Strategies for High Impact (S4HI) has joined over 55 other groups to endorse the Long Covid Research Moonshot Act, which provides $10 billion over 10 years for the U.S. National Institutes of Health (NIH), plus additional funding for related programs.

This bill will invest in much-needed research, treatment, care, and health education for LC and associated diseases. And we know that we’ll need to keep the pressure on and continue advocating for pandemic justice & health equity.

We’re calling for:

➡ significant patient and community involvement in all areas of the bill’s implementation including the Advisory Board - prioritizing voices from groups disproportionately affected by LC like Black, Latiné, trans, queer, and disabled people

➡ support for trials of therapeutics prioritized by post-viral experts and patient groups in the Long COVID, ME/CFS, and dysautonomia communities (don’t repeat the mistakes of the RECOVER trials!)

Learn more and take action: