Advocacy Led by People with Long COVID
Expand support and resources for advocacy efforts led by people with Long COVID and allies.
For: Advocacy organizations, pharmaceutical companies, and philanthropic entities.
Short-term Recommendations:
Unrestricted grant dollars: Encourage unrestricted funding from private donors and foundations to support and advocacy organizations, so that they can self-determine how, when, and towards what resources are used.
Diversity, equity, and inclusion-related outreach funding: Provide funding to new and existing support and advocacy groups to increase outreach to and programming for underresourced and underrepresented communities.
Ethical compensation guidelines: Create guidelines for fairly compensating advocacy organizations that partner with institutions (i.e., to identify participants for research studies).
Advocacy organization collaborations: Collaborate with advocacy organizations that maintain communities and databases of people with Long COVID to recruit for scientific and medical research and track symptoms.
Long-term Recommendations:
Pharmaceutical industry pledges: Negotiate with Pfizer, Moderna, and other pharmaceutical companies to carve out a portion of their funds to support patient-advocacy groups.
Charitable giving tax write-offs: Increase charitable giving write-offs to 100 percent of one’s adjusted gross income to incentive charitable giving from American taxpayers.