President's Column

Read archives from AAN Past President Orly Avitzur, MD, MBA, FAAN, who served from May 2021 to April 2023.

July 2022

AAN Members Advocate for Research for Post-acute Sequelae of COVID-19, the Third Leading Neurologic Disorder Today

We will likely not fully understand the long-term consequences of COVID-19 for years to come, but American Academy of Neurology members caring for people with post-acute sequelae of COVID-19 (PASC) are worried about what they are seeing now. Their patients are called "long haulers"—a term borrowed from the trucking industry after a preschool teacher became sick and created a Facebook support group named to characterize the unpredictably long journey of suffering that many COVID survivors were beginning to report. According to a February 2022 analysis by the US General Accounting Office, there were 81 million survivors of COVID in the US, and it estimated that 30 percent have PASC or long COVID. By the end of May, the number of survivors grew to 82.5 million—meaning there were as many as 24.75 million Americans considered long haulers. This makes PASC the third leading neurologic disorder, second only to tension-type headaches and migraine. These bleak numbers are expected to continue to rise.

"There are a wide range of new, returning, or ongoing health problems after being infected with the virus that causes COVID-19," said Igor J. Koralnik, MD, FAAN, FANA, in a May 18 congressional briefing co-hosted by the AAN entitled, "The Long-Haul Neurological and Psychological Impacts from COVID-19". Dr. Koralnik, who serves as chief of the Neuro-Infectious Diseases and Global Neurology division at Northwestern Medicine, explained, "They may happen to anyone infected, and we have no specific diagnostic test for it." At the Northwestern Neuro COVID-19 center, which had evaluated 1,400 such patients as of May 2022, so-called long haulers present with myriad symptoms including brain fog, headache, numbness/tingling, dysgeusia, anosmia, myalgia, and dizziness, among other symptoms. Dr. Koralnik told me that a recent study at his center revealed persistence of most neurologic symptoms for an average of 14.8 months since disease onset in his clinic’s patients.

"There is a need for dedicated NIH research funding to find out why PASC predominantly affects the nervous system and what its root cause is," Dr. Koralnik urged lawmakers. At Neurology on the Hill, which convened on May 23, 2022, 160 AAN members representing 43 states came to advocate for neurology with their congresspeople. Priority issues included three major requests: enact reforms to step therapy and prior authorization protocols to ensure timely access to care; support a multi-year extension of Medicare telehealth flexibilities; and back policies to increase and strengthen the neurology workforce to address the growing need for neurologic patient care. While a neurology workforce shortage predated COVID, the evolving increase in neurologic manifestations of COVID and commensurate need for neurologic care makes this final issue more important than ever.

Derek C. Brandt, JD, director of congressional affairs at the AAN, updated attendees about the legislative issues related to COVID-19. "Currently, Congress is debating a $10 billion funding package focused on vaccine distribution/development, therapeutics, and testing capacity, however, new funding related to COVID has become more politically contentious over time." He added, "Several bills have been introduced to Congress that focus on research, education, and data collection of PASC. These include: the Cures 2.0 Act (H.R. 6000); the COVID-19 Long Haulers Act (H.R. 2754); the CARE for Long COVID Act (S. 3726); the TREAT Long COVID Act (H.R. 7482/S. 4015); and the Brycen Gray and Ben Price COVID–19 Cognitive Research Act (H.R. 7180/S. 4014)."

On April 5, President Biden issued a presidential memorandum directing the Secretary of Health and Human Services to coordinate a new effort across the federal government to develop and issue the first-ever interagency national research action plan on long COVID. The effort will advance progress in prevention, diagnosis, treatment, and provision of services, supports, and interventions for individuals experiencing long COVID and associated conditions.

The AAN is actively monitoring the implementation of this action plan and looking for areas for collaboration and input. The Academy launched a Neurologic Complications of COVID-19 Work Group chaired by Past President James C. Stevens, MD, FAAN, early in the pandemic and recently agreed to focus on the following federal policy priorities: data collection through the Patient-Centered Outcomes Research Institute (PCORI) and NIH studies; mitigating disparities in care and focusing on patient diversity in research; unifying definitions and language around PASC; defining outcomes; and care coordination across primary care and several specialty providers. The COVID-19 Work Group is also involved with supporting the research efforts of the COVID-19 Neuro Databank/Biobank established by NYU Langone Health with the support of the National Institute of Neurological Disorders and Stroke.

While we await the answers this research will bring, neurologists are considering the health care burden and societal implications of PASC. "I'm very concerned about the long-term consequences of this condition," said NOH 2022 attendee Glen R. Finney, MD, FAAN, chair of the AAN BrainPAC Executive Committee which raises funds to educate federal legislators about critical issues facing neurologists, our patients, and our profession. Dr. Finney, who serves as director of the Memory and Cognition Program for Geisinger in Wilkes Barre, PA, said, "Given the wide age range of the people who are experiencing these problems—struggling with going back to work and trying to reach their prior level of ability—this is impacting not only individual financial well-being but is likely to adversely affect our economy for a long time. We really need a major increase in funding to better engage and empower researchers to tackle this topic."

Orly Avitzur, MD, MBA, FAAN
President, AAN
oavitzur@aan.com
@OrlyA on Twitter