About Long COVID
Long COVID (Post-Acute Sequelae of SARS COV-2 COVID (PASC)) is a mass disabling event affecting numerous organ systems and individuals of any age. The CDC identifies that 1 in 13 adults in the U.S. (7.5%) have “Long COVID” symptoms, defined as symptoms lasting three or more months after first contracting the virus and that they didn’t have before their COVID-19 infection. Addressing this ongoing challenge to the nation’s economy, well-being, and security requires a coordinated, patient-centered response.
Leveraging the Initial Investment in Long COVID
As part of the initial Federal response to Long COVID, the National Institutes of Health launched the Researching COVID-19 to Enhance Recovery (RECOVER) Initiative that competitively selected a network of enrollment sites (hubs) that cover 24 states, the District of Columbia, and Puerto Rico.1 Each hub coordinates with community partners to enroll around 1,000 participants and collect their clinical tests and characteristics in associated biobanks and databases.
Through deep collaboration over the subsequent months, the Principal Investigators (PIs) of the hubs have identified gaps in the response to care in patients with Long COVID and developed strategies to address these gaps. The Federal response needs to evolve.
Sites such as the RECOVER recruitment hubs–or other similar sites with appropriate infrastructure already in place to treat Long COVID patients–are a natural next step to providing these Long COVID patients with care. This would include the following elements:
- Support patients by coordinating clinical care and rehabilitation, reducing healthcare disparities, and addressing ongoing and complex medical and psychosocial needs, focusing on patients who presently receive fragmented or no care.
- Define, continuously improve, and implement standards of care and best practices through a coordinated exchange of information.
- Leverage novel methods to disseminate information and provide support to educate providers, patients, and communities to broaden access to high-quality care and further reduce disparities.
- Develop and implement workforce training programs for healthcare providers caring for Long COVID patients.
1 Fifteen of these sites are enrolling adults, seven are focused on pediatric populations, and two are focused on the pregnant population.
Why The Urgency For Action Now?
Hospital systems and healthcare providers currently lack the tools to address Long COVID. For example, there are no current best clinical practices for providing care to individuals with Long COVID, and the national response toward developing such practices lacks coordination. The RECOVER site PIs have established an effective collaborative network to serve as Centers of Excellence, building on the existing RECOVER infrastructure and network to implement these strategies immediately.
Funding Request: Request/Suggested Language
Congress should include $37.5 million in Fiscal Year 2024 funding for the Health Resources and Services Administration to competitively select Long COVID Centers of Excellence that build on the initial Federal investment in RECOVER Hubs and other federally-supported Long COVID activities.
Fiscal Year 2024 Labor/HHS/Education Appropriations
HHS/Health Resources and Services Administration
"Long COVID Centers -- The extensive incidence of individuals suffering from Long COVID (Post-Acute Sequelae of SARS COV-2 COVID (PASC)) presents an ongoing challenge to the health care system, patients and their caregivers. The Committee supports the establishment of a network of Long COVID Centers of Excellence that can gather, develop and disseminate data regarding evidence-based treatment; educate and train providers on best practices; conduct outreach to affected populations and community organizations; and coordinate access to care. The Committee has included $37.5 million to competitively fund a network of such sites. In making awards, HHS is instructed to prioritize geographically diverse entities with experience working with Long-COVID patient populations on research and clinical care, and the ability to coordinate on data sharing and the identification of evidence-based treatments."
Proposed Budget
The fundamental components of this undertaking are computational infrastructure, care coordination, expanded clinical evaluation of best practices, outreach and disparity reduction programs, and workforce training. This would predominantly involve augmented personnel and some technology investment.
A fully built-out, scalable capacity would support approximately 2,000 patients/year/site; extend education, outreach, and best practices to cover >10,000 patients/year/site; and cost approximately $2.5 million per site.
| Activity | Description | Cost |
|---|---|---|
| Provider Support and Population Outreach | Provide medical directors, care coordinators, telehealth & specialty clinic support, coordination, and compassionate care, with specific outreach to vulnerable and underserved populations. | $828,000 |
| Data Collection and Dissemination | Generate and maintain a national treatment directory dashboard (infrastructure, program managers; teleconferencing and in person conferencing to review and update best practices). | $447,000 |
| Community Support and Provider Education | Community outreach, small community grants and education lectures for physicians, other health care providers and patients. | $580,000 |
| Provider Training | Train EMS, ER Physician & staff, urgent care center staff, PCP's, rehab centers, school nurses and other staff to care for Long COVID patients. | $645,000 |
Today, Long COVID sufferers must navigate healthcare resources on their own. Many don’t know where to go or whom to call; triaging their symptoms and ensuring they find the right physician specialty is very complex. Further, there are no established treatment standards for Long COVID. This reality means that patients are desperate for the care they need. We must act now to help them.