Impact of the COVID-19 Pandemic on the Program The U.S. Department of Health and Human Services declared a public health emergency on January 27, 2020, because of confirmed cases of 2019 Novel Coronavirus. COVID-19 caused significant disruption to health care systems throughout the U.S., and many SCD providers in the SCDTDRCP were engaged in either front line care or planning and developing procedures and processes, or both, to respond to evolving needs. Healthcare systems and individual providers quickly implemented new workflows and treatment approaches to provide essential care for people living with SCD -- who were at high risk for serious complications of COVID-19. The pandemic directly affected SCD care and the implementation of the Program for at least 18 months, half the Program. Across the board, RCCs had to temporarily halt or change their operations, which altered some clinical and CBO services for people with SCD. These changes impacted the activities and data collection of the Program. SCD Clinical Care and CBO Services Though clinics and care teams could not operate under standard procedures they pivoted to support their SCD population and their organizations as well as they could. See Appendix A for RCC COVID-related activities. Given the potential of deadly infection for this immunocompromised patient group, clinicians did everything they could to keep their patients out of EDs to reduce the possibility of virus infection. While there was variation by state, clinic and location, programs implemented strict changes to their clinical operations and community offerings, including: • Staffing triage calls 24 hours a day so no patient would go to the hospital before speaking to someone on the SCD team
• Working with hospital administration to give up dedicated SCD dayclinic space such as for blood transfusions to in-patient rooms for those sick with COVID-19 • Merging pediatric care centers to allow for opening more adult care locations, given the number of adults needed treatment for COVID-19 As COVID-19 halted in-person meetings across the U.S., the ability to regularly share information among providers in person decreased and, in many cases, abruptly ceased, as did most community programming — having to be canceled or modified to a virtual platform. RCCs found that while they lost the opportunity for informal teaching and sharing, the established structure of the Program network allowed them to continue their ability to quickly exchange information through telementoring such as Project ECHO® which became essential during the pandemic. RCCs capitalized on their experience using this model to expand COVID-19 offerings to quickly meet the information and education needs of attendees. COVID-19 prompted the necessity to offer telehealth for patient/provider medical visits more broadly and frequently. While some clinics had deep experience providing direct-to-patient telehealth prior to COVID-19, it was not highly utilized in many clinics, resulting in implementation challenges and barriers (such as equipment or device access, connectivity, technology literacy, inability of some patients to use video visits, etc. for both patients and providers). Given that telehealth is likely to continue at higher levels than pre-pandemic, these issues must continue to be resolved. Further, while telehealth appointments are a valuable option, they cannot replace all clinical appointments for this population; some services must be completed in person (for example, TCDs, medication adjustment, acute pain management, transfusions, assessing disease progression). Positively, reimbursement mechanisms were quickly established to support this important care offering and RCCs recommend that such mechanisms continue for care continuity.
• Allowing only one caregiver in pediatric practices, and no companions in adult care units, except to support patients with cognitive dysfunction • Providing protection for adult patients with end organ damage, especially lung disease, to bypass waiting areas and go directly to patient care rooms
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