Capitol Hill Report: AAN URGES CONGRESS TO FOCUS ON LONG COVID; JOINED BY 75 ORGANIZATIONS
July 25, 2022
Latest Advocacy News
- Recently, the US Senate came to an agreement on a long-awaited reconciliation package that focused on two AAN priorities: lowering prescription drug costs and extending Affordable Care Act insurance subsidies. Learn more about this agreement and urge your senators to vote in favor of this deal.
- On June 16, CMS announced the beginning of a “reconsideration process” for a National Coverage Determination made in 2015 for beta-amyloid PET scans. This NCD limited access to these scans through Coverage with Evidence Development. The AAN has engaged on this issue multiple times over the years, ramping up our engagement in the wake of the approval of aducanumab, a therapy aimed at reducing amyloid plaque in the brains of patients with Alzheimer’s disease. The AAN submitted an individual letter to CMS in support of this reconsideration as well as a joint letter to the same effect with the American Geriatric Society and the Society for Nuclear Medicine and Molecular Imagining.
- As expected, on July 15 the secretary of Health and Human Services (HHS) renewed the Covid-19 Public Health Emergency (PHE) declaration. Doing so allows critical flexibilities―including those impacting telehealth―to remain in place. The secretary of HHS must recertify the PHE declaration every 90 days and the Biden administration has committed to providing stakeholders with at least 60 days notice prior to terminating the PHE.
- On June 15, CMS released the 2023 Hospital Outpatient Prospective Payment System proposed rule. The AAN is currently reviewing the provisions of the proposed rule to ascertain the impacts on neurologists and neurology patients.
Issue in Focus
AAN President Orly Avitzur, MD, MBA, FAAN, recently outlined in her monthly column the reasons why the American Academy of Neurology is advocating for additional research into “Long COVID,” i.e., post-acute sequelae of SARS-CoV-2 infection (PASC). PASC is so rampant that it has quickly become one of the most prevalent neurologic disorders, impacting millions of people in the United States alone. The health care burden and societal implications are likely vast, and without proper information sharing, patients could suffer devastating consequences and misdiagnoses. Understanding the core causes of PASC will make it easier for providers to identify patients who are more at risk of developing its chronic symptoms, and potentially provide early interventions. While many federal efforts are ongoing to evaluate and better understand PASC, more can be done to enhance our knowledge and interventions for this condition.
On July 14, the AAN led a letter, supported by 75 other national and state organizations, to congressional leaders urging them to convene hearings to explore potential solutions to PASC. The letter suggested exploring broad themes in these hearings such as: unifying definitions and language around PASC; enhancing research, data collection, and surveillance and identifying additional opportunities; focusing on patient diversity in research and mitigating disparities in care; defining outcomes; educating medical professionals and patients about PASC; and the development of guidance for clinical treatment and care coordination across primary care and several specialty providers.
Fortunately, last week the House Select Committee on the Corona Virus Crisis started this conversation by holding a hearing—“Understanding and Addressing Long COVID and Its Health and Economic Consequences”—focused on some of these topics. The hearing featured testimony from a patient advocate, Long COVID researchers and clinicians, and a labor market expert, each of whom discussed the impacts of PASC on health care and society. Hopefully, this hearing is the first of many exploring and considering solutions to this critical issue. In the coming weeks, the AAN is scheduled to meet with several key congressional offices to discuss these topics further, so look out for additional updates on this topic in future Capitol Hill Reports!
What We're Reading
- Experts Urge Caution in Rushing to Define Long COVID (MedPage Today)
- Patients with Epilepsy Navigate Murky Unregulated CBD Industry (KHN)
- Feds Want a Policy That Advocates Say Would Let Hospitals Off the Hook for Covid-Era Lapses (KHN)