In our Vision for 2023 post last year, we outlined our plans to grow our impact and influence. Since then, we have been working hard to achieve our vision by advocating on behalf of people disabled by long COVID.
- Last year, we described how we would upgrade our COVID-19 Advocacy Center to make it easier for people affected by long COVID to make their voices heard.
- We also committed to raising awareness about long COVID through public awareness campaigns and grassroots advocacy efforts.
- Additionally, we described how we wanted to engage with employers and the business community to educate them about how workers are impacted by the disabling effects of long COVID.
- Regarding our legal services, we communicated our commitment to recruiting additional attorneys and providing training to our volunteer legal service providers.
- We also described our intention to publish additional resources for people affected by long COVID, and to speak at events and conferences to share the importance of our work and solutions to the challenges faced by patients.
- Additionally, we sought to collaborate with policymakers to implement policy reforms that are responsive to the needs of patients.
Where do we stand on our progress towards these objectives, and how do we plan to build upon this progress in 2024?
Our Progress in 2023
In early 2023, we completed the upgrade of our COVID-19 Advocacy Center, which has made it easier than ever for people to make their voices heard. In fact, our COVID-19 Advocacy Center was leveraged heavily throughout the year by long COVID patients in support of key policy provisions in the Stop the Wait Act, the CARE for Long COVID Act, and the SSI Savings Penalty Elimination Act. We also collaborated with policymakers in Congress by providing technical feedback on the CARE for Long COVID Act before it was reintroduced on March 15, 2023.
On May 15, 2023, we took our team to Washington, D.C., where we delivered a stirring presentation to Congressional staffers with our Patient Perspectives on Long COVID event. During this pivotal presentation, we worked to raise awareness about long COVID among policymakers and the public while outlining concrete policy solutions that would benefit patients.
In addition to our Patient Perspectives on Long COVID event, we delivered presentations during webinars and conferences to raise awareness about long COVID and the issues important to patients throughout the year. Notably, Pandemic Patients delivered the following presentations:
- Pandemic Patients webinar: “The End of the Public Health Emergency: What it Means for You, What’s Next?”
- Pandemic Patients webinar: “Advocacy Chat: CARE for Long COVID Act”
- Patient Assistance and Access (PAP) Conference 2023: “The End of the Public Health Emergency – What Does this Mean for Patients?”
- Robert Wood Johnson Foundation: “Lunch & Learn: Long COVID”
Our work was also featured in a variety of articles. Our legal research on long COVID and disability benefits was featured in an article published on Medscape and our staff and volunteers were quoted in numerous news articles published by national outlets, including CNBC, the National Journal, SELF, Mashable, and more. You can visit our Media page to review our press hits to learn more.
In 2023, Andrew Wylam was invited to be a patient representative on the National Institutes of Health’s (NIH) RECOVER Initiative. As a voting member of the Electronic Health Records Coordinating Committee (EHR CC), Andrew assists the Committee in the development of research priorities and elevates the voices and perspectives of long COVID patients in those conversations.
We have continued to recruit skilled volunteer attorneys to participate in our Pandemic Legal Assistance Network (PLAN) and deliver critical legal support to long COVID patients. To ensure our volunteers are equipped with the information they need to provide competent representation on complex matters, Pandemic Patients has become a member of the Practicing Law Institute, which provides comprehensive training and resources on a variety of issues.
Through our direct legal support services, we have helped long COVID patients across the country file applications for disability benefits and appeal their applications when they are wrongfully denied. Additionally, we have provided direct pro bono representation to employees who have been discriminated against in the workplace because of their disabling long COVID symptoms. We have made historic progress enforcing the rights of disabled long COVID patients in the workplace and we are extremely proud to be involved in some of the first cases where the Equal Employment Opportunity Commission (EEOC) has held employers accountable for discriminating against employees on the basis of their long COVID disability.
We have also submitted a Freedom of Information Act (FOIA) request to the EEOC to obtain aggregate statistics on the number of charges involving long COVID brought against employers in the United States. This information obtained by this FOIA request will include a breakdown of the final disposition of these charges and a comparison of how many charges of disability discrimination involve long COVID versus other disabilities. We have received confirmation that our FOIA request will be fulfilled by the end of 2023.
Our work has called attention to the importance of workplace disability issues not only for employees but also for employers. While we hoped to engage more meaningfully with educating employers about their responsibilities under federal civil rights laws in 2023, we still intend to pursue this work in the future.
Our Vision for 2024 Includes:
- Implementing a new mission statement and vision statement to reflect the organization’s focus on issues at the intersection of long COVID, disability, and employment.
- Rebranding the Pandemic Patients logo to more closely align with the identity and purpose of the organization.
- Strategically restructuring our Pandemic Legal Assistance Network to more effectively deliver support to long COVID patients experiencing legal issues related to disability and employment.
- Hiring in-house legal staff to increase the capacity of our legal services.
- Convening a focus group to gather information about the challenges and barriers long COVID patients experience in the workplace and developing policy solutions that would address those issues.
- Engaging with employers to educate them on the experiences of long COVID patients in the workplace and how they can most effectively support employees with long COVID.
Our vision for 2024 represents pivotal progress in our growth as an organization and our commitment to elevating the voices and experiences of people affected by long COVID. We are overflowing with ambition, but I know we can accomplish our goals with your support.
Are you a #pandemicpatient?
Each year, Pandemic Patients launches a year-end fundraising campaign that strives to raise awareness about long COVID while also helping us raise the funds we need to continue this important work. For this year’s campaign, our goal is to raise $150,000 by December 31, 2023.
With this year’s campaign, we ask, “are you a #pandemicpatient?” During our campaign, we are soliciting video responses from long COVID patients about the topics central to our work, and we are sharing those stories during the campaign with a coordinated social media strategy. Each week, we are releasing a new video prompt that asks a different question. Today marks the close of our first week of fundraising, which asks long COVID patients to respond to the following question: “What has long COVID taken from you?” For people who submit a video response, they will be entered to win a $100 gift card through Vocal Video! You can also participate in the campaign by using the #pandemicpatient hashtag on social media to share your story with the people in your network!
Be sure to subscribe to our mailing list so you will be notified when we release a new storytelling opportunity each week. You can also visit our storytelling page to track which prompts we’ve already released.
Our work is only possible with generous donations from people like you.
Can we count on you to donate to our fundraising campaign to ensure we can provide the best support possible to people affected by long COVID? Thank you so much for your continued support and for trusting us to advocate on behalf of the #pandemicpatient in your life.