AAPM&R will provide consistent updates on our advocacy outreach efforts, the Multi-Disciplinary PASC Collaborative and other relevant information to our Long COVID initiative.
Multi-Disciplinary PASC (Long COVID) Collaborative
In March 2021, we launched a Multi-Disciplinary PASC Collaborative of experts to develop clinical guidance to improve quality-of-care, formal education and resources to improve experience-of-care and health equity. The first full collaborative call took place on March 20 where the PASC symptom area of Fatigue was discussed; we're grateful that friends from the Centers for Disease Control and Prevention (CDC) were present. The Collaborative's Fatigue Writing Group and Cognitive Impairment Group met March 30 and April 7, respectively, to discuss guidance statements.
The second call was held on April 20 and focused on Fatigue Guidance Statement consensus building as well as beginning discussion on Cognitive Impairment. Representatives from The Patient Led Research Collaborative for Long COVID (a patient-led research group) presented and engaged on the call. Our smaller writing groups will continue to meet in between full collaborative calls to aide in our consensus building process.
The Academy and Foundation for PM&R are teaming up to respond to a National Institutes of Health (NIH) request for information on common data elements for research, especially related to COVID-19.
Meeting with the White House Domestic Policy Council
On April 16, AAPM&R met with Kimberly Knackstedt, Director of Disability Policy for the White House's Domestic Policy Council. The Domestic Policy Council has seen our initial letter to President Biden, Vice President Harris and Congressional Leadership, and our call for a federal commission to address the Long COVID crisis. Monica Verduzco-Gutierrez, MD, FAAPMR joined to discuss her on-the-ground experience treating Long COVID patients. The Academy thanks the administration for engaging us in this important dialogue, but our advocacy efforts are far from over, as we work to ensure resources, access and research are prioritized to fight Long COVID.
Hearing on "The Long Haul: Forging a Path Through the Lingering Effects of COVID-19"
Members of the PASC Collaborative, representing AAPM&R, were asked by House Energy & Commerce Health Subcommittee staff to submit written testimony for the Subcommittee's hearing on Long COVID. The testimony and other information about the hearing is available here. Additionally, AAPM&R was specifically recognized by Dr. John T. Brooks, Chief Medical Officer of the Centers for Disease Control and Prevention COVID-19 Response, in his Congressional testimony.
On April 30, members of the PASC Collaborative, representing AAPM&R, met with the National Council on Disability (NCD). Benjamin Abramoff, MD, FAAPMR joined to explain the multidisciplinary clinics. The NCD discussed adding language to these clinics in a draft they are working on for a potential executive order of piece of legislation and working with AAPM&R as a resource to support these efforts.
The Academy continuously works to represent PM&R through these collaborations, and it is through these partnerships that we can discuss and share a variety of resources with you that you critically need.