National Academies report aims to make ALS ‘livable’ in 10 years

Road map brings 'much needed support' to community, ALS Association says

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by Mary Chapman |

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The ALS Association is commending the National Academies of Sciences, Engineering, and Medicine for its “groundbreaking” and comprehensive report that maps a way toward making amyotrophic lateral sclerosis (ALS) a livable disease within a decade.

The organization and ALS advocates played a key role in pushing for the 18-month study and securing $1 million from the U.S. Congress to fund it. These efforts resulted in the newly released, nearly 200-page report that recommends key actions for public, private, and nonprofit sectors. The guidelines will inform policy decisions in the U.S. and drive strategic priorities.

Titled “Living with ALS,” the report is a “significant milestone” that will bring “much-needed hope and support to the ALS community,” the association said a press release.

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“This new report is hugely important for the future of the fight against ALS,” said Calaneet Balas, president and CEO of the ALS Association. “We still need to review and discuss each of the individual recommendations in the report, but taken as a whole, it’s clear that there needs to be a significant investment in ALS research and an overhaul of how ALS care is delivered and paid for.”

The ALS community, Balas added, “needs to unite around the best recommendations found in the report and push policymakers and payers to take immediate action on them.”

Two years ago, the Congress directed the National Institutes of Health to commission a National Academies committee to recommend actions that stakeholders should take to make ALS a livable disease within the next decade.

In its role in the initiative, the ALS Association contributed recommendations, participated in interviews and presentations, and provided expert insights. The organization’s involvement ensured that patients’ needs and voices were at the heart of the report’s findings and recommendations, the association said.

“Our goal is to make ALS a livable disease until we can cure it, and this report will serve as a vital road map to achieving that,” Balas said. “We are committed to driving the most critical recommendations forward and ensuring that people with ALS and their loved ones receive the care and support they need.”

The consensus report was produced by a committee of scientific and clinical experts from varied fields, patients, and those at risk of developing ALS. It focuses on using an integrated ALS multidisciplinary care and research system to help facilitate earlier diagnoses and specialized care.

“Amyotrophic lateral sclerosis (ALS) is a terrible, inevitably fatal disease,” the report’s preface states. “Receiving a diagnosis … is devastating for people living with ALS … . Dealing with this illness requires a complex array of medical and support service interventions, and the intensity of care required increases exponentially over time.”

This work “lays out an agenda that, if implemented, would provide greater and more equitable access to state-of-the-art multidisciplinary care, accelerate the development of more effective treatments, improve the quality of life and health of those individuals suffering from the illness … and provide better support for their families and caregivers,” the report adds.

“Implementing this agenda would go far toward the goal set in the committee’s charge of making ALS a livable disease in a decade.”

‘Living with ALS’ includes range of short- and longer-term recommendations

Making the disease “livable,” the report’s summary states, means that patients or those at risk for ALS could live a long and meaningful life “while meeting the medical, psychosocial, and economic challenges of the disease.” Better treatments until a cure is found will be required, as will improvements in life quality, according to the report.

Recommendations focus on short-term steps to remove barriers to care and services, and longer-term steps to build a sustainable, integrated, and coordinated system of disease care and research. They also emphasize actions to improve epidemiological data, accelerate research and therapy development, and advance what works best in ALS care.

Among short-term steps are recommendations for tax credits for unpaid caregivers and greater public and private insurance support for care needs. Longer-term efforts focus on setting up a “hub-and-spoke” care system similar to that used for cancer and stroke, and establishing a centralized clinical trials network, a National Academies release states.

The report also recommends steps to advance research into ALS prevention, with a goal of stopping the disease from developing in at-risk populations.

The report is scheduled to be presented in detail July 17 at the ALS Association’s inaugural ALS Nexus conference for patients and family members, researchers, healthcare professionals, and advocates, which opens July 14 in Dallas.