A new report from the National Academies of Sciences, Engineering, and Medicine discusses how the health-care field and its professionals could most effectively support people living with amyotrophic lateral sclerosis (ALS).
The consensus study report was introduced during a June 18 webinar.
“At any one time, at least 30,000 people in the U.S. are living with ALS, a rapidly progressive, fatal neurological disease affecting individuals, caregivers, at-risk genetic carriers, and others,” the National Academies said in a June 18 announcement. “In 2022, Congress directed the National Institutes of Health to commission a National Academies committee of experts to recommend key actions public, private and nonprofit sectors should take to make ALS a livable disease within the next 10 years. The resulting report, Living with ALS, focuses on an integrated ALS multidisciplinary care and research system to help facilitate earlier diagnosis and connections to specialty care.”
Emphasizing quality of life, access to technology
The webinar presentation emphasized the importance of making ALS “livable,” which the National Academies defined as “an individual diagnosed with ALS or at genetic risk of developing ALS could survive, thrive and live a long, meaningful life while navigating medical, psychosocial, and economic challenges of the disease.
“What is meaningful to a person with ALS will vary, and priorities and values may change over time. Making ALS livable has two important dimensions: (1) increasing effectiveness of treatments and ultimately finding a cure, and (2) increasing quality of life.”
The report includes discussions of the problems in public, private and nonprofit sectors that need to be solved to make ALS a livable disease, as well as the types and ranges of care and services needed by people with ALS as well as their families.
The more specific topics covered in the webinar included respiratory care, including the use of non-invasive ventilation, and the challenges that ALS patients face when trying to obtain proper care and equipment. “Private [insurance] plans often deny coverage for respiratory devices,” the report noted.
In response, the National Academies recommended enabling “access to respiratory devices and services for people with ALS. CMS [Centers for Medicare & Medicaid Services] and private insurers should immediately align coverage of respiratory devices and services for persons with ALS with the current standard of care.”
The report’s authors further called for “Early initiation of non-invasive ventilation without ‘fail first’ or a requirement to show clinical improvement” and “coverage for respiratory therapists to provide in-home care.”
Recommendations for VA ALS care
Other recommendations included greater access to ALS clinical care within the Department of Veterans Affairs (VA), which could involve expanding the VA’s ALS workforce and allowing “access to research, such as clinical trials.”
The VA should also be able “to integrate data with the national ALS registry,” the report said. “Congress should allocate specific funding to create a VA network for ALS clinical care, research, education, and innovation to align with the new system of care outlined in this report.”
Research wise, the report recommended funding for studies “that would yield near-term gains in quality of life for people with ALS.” Potential topics of research could include “non-pharmalogic interventions (physical therapy, speech and language therapy, etc.); social and behavioral research; risk and protective factors; development of ALS after trauma; clinical outcome measures for function, survival and quality of life; emerging technologies; and diagnostic AI.”
The nonprofit National Academies of Sciences, Engineering, and Medicine “provide independent, objective advice to inform policy with evidence, spark progress and innovation, and confront challenging issues for the benefit of society,” according to its website. The National Academies said that annually, about 6,000 professionals from the sciences, engineering and medicine fields “volunteer their time and extensive knowledge” to policy studies, workshops, symposia and other projects.
