Living with ALS (2024) / Chapter Skim
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People living with ALS typically experience respiratory failure within 2 to 5 years of when symptoms first appear. Approximately 10 to 20 percent of ALS patients survive longer than 10 years and this is typically seen in people with youngeronset ALS.
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This included perspectives of people living with ALS, caregivers, family members, and people with a genetic risk of developing ALS. 1 See https://www.nationalacademies.org/about for a detailed overview of the National Acad emies and see https://www.nationalacademies.org/about/our-study-process for an overview of the National Academies' study process (accessed June 10, 2024)
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• Inadequate home services: There is a serious challenge in accessing high-quality, affordable home health services for the complex and evolving needs of people with ALS. • Inadequate access to respiratory care: Despite strong evidence that proactive respiratory management prolongs survival and improves quality of life, barriers remain to delivering optimal clinical respira tory care for people living with ALS.
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Multidisciplinary clinics provide coordinated, team-based management across multiple medical and allied health specialties and serve as a one-stop shop for complex multisystem diseases, such as ALS. However, there is no definitive count of the number of people living with ALS today who receive evidence-based standard of care at a multidisciplinary clinic but one estimate from the ALS Association suggests that it is at best about half of the population.3 A multidisciplinary care clinic serves as a single site for many services for people living with ALS, confirming diagnosis, initiating and monitoring therapies, providing medications and assistive technology devices, and managing multisystem symptoms.
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3. Actions to improve epidemiological data, accelerate research and therapeutic development, and advance understanding of what works best in ALS care (Recommendations 5-1 to 5-4)
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National and local ALS nonprofits should collaborate to develop a priority list of caregiver needs to inform collec tive advocacy efforts of national ALS nonprofits. This could be accompanied by a guide for ALS caregivers on what to expect through the course of disease and identify resources,
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BUILDING THE IDEAL ALS CARE DELIVERY SYSTEM Today, there is notable variation across clinics in the quality and consistency of care individuals with ALS receive, including prescribing of standard-of-care therapeutics, use of noninvasive ventilation, use of off-label supplements and medications, clinical trial participation, and access to investigational therapies via expanded access protocols. Making ALS a livable disease requires diagnosing individuals earlier and initiating
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Today, there are many non-ALS-trained neurologists providing care to people living with ALS in general neurology or general neuromuscular clinics who could be integrated into the new ALS care system under the guidance of Comprehensive ALS Care and Research Centers. This would expand the number of general neurology and neuromuscular clinics within the ALS care and research system, enhancing access to care and reducing the time to diagnosis.
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This places a financial strain on ALS multidisciplinary clinics, hindering their ability to hire, retain, and expand the clinic staff to meet the needs of people living with ALS and their families. Today, larger ALS clinics rely heavily on philanthropy and institutional resources, which is unsustainable, exacerbates the significant variations in resources that exist across ALS clinics, and limits access to state-of-the-art care.
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ALS multidisciplinary clinics should partner with community members and community-serving organizations to pursue targeted approaches to understanding and improving racial and ethnic equity in ALS care and outcomes in their geographic area. The committee believes there are several opportunities that ALS clinics, in partnership with entities that serve the local community such as Federally Qualified Health Centers, should pursue, including the following: • Create community-focused steering committees.
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VA should use these funds to resolve ALS workforce shortages, ensure access to comprehensive ALS care for veterans regardless of geographic location, increase the number of health professional training opportunities to support ALS care for veterans, and invest in clinical and informatics resources at VA to enhance existing collaboration with the Centers for Disease Control and Prevention ALS registry. ADVANCING ALS RESEARCH AND ACCELERATING THERAPEUTIC DEVELOPMENT The history of drug development for ALS is filled with many failures and too few successful drugs.
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. Integrating Clinical Research into the ALS Care Delivery Network Although a variety of mechanisms exist for conducting clinical trials a centralized, dedicated ALS clinical trials network that builds on and brings together existing ALS clinical trial consortia would provide a coherent approach to clinical trials and natural history studies that permits faster answers to multiple questions at once.
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