Healthcare costs increase as ALS progresses, Biogen study finds
Medical costs found to climb to over $120K annually in late disease stage
Due to substantial increases in the use of healthcare resources, medical costs in the U.S. for people with amyotrophic lateral sclerosis (ALS) rise significantly as the disease progresses, going from about $31,000 per year in the early disease stage to $122,000 per year in the late stage, a study by Biogen researchers found.
The team called for early ALS diagnosis and treatment as a way to help ease the disease’s economic burden.
“The use of health care resources and costs increases with how bad ALS gets,” the researchers wrote. “Finding out early if someone has ALS and treating them as soon as possible may reduce these costs by keeping them at a stage that uses fewer resources.”
The study, “Health care resource utilization and costs across stages of amyotrophic lateral sclerosis in the United States,” was published in the Journal of Managed Care & Specialty Pharmacy. It was funded by Biogen, which markets Qalsody (tofersen), an approved ALS therapy for adults with the disease who have mutations in the SOD1 gene.
Looking at US healthcare claims to assess costs for ALS patients
People living with ALS experience a range of symptoms, such as muscle weakness, twitching, and difficulty swallowing and breathing, which worsen as the disease progresses. The healthcare costs for ALS are high, topping more than$1 billion each year in the U.S. alone.
As ALS advances from early to late stages and patients gradually lose their ability to perform daily functions, it is expected that the disease’s economic burden on them will grow. A delayed diagnosis or inadequate treatment can lead to a significant increase in the use of healthcare resources and related costs, according to the team.
“Improvements to reduce the time to diagnosis and the time to genetic testing would facilitate people with ALS receiving therapies earlier in the disease course and could potentially delay progression into a more resource-intensive stage,” the researchers wrote.
To better understand how healthcare costs change as the disease progresses, the researchers drew on healthcare claims from U.S. databases, spanning the years from 2013 to 2019. The team identified 2,273 patients, with an average age of 60.1, who were followed for one year before their diagnosis and at least six months after.
The study aimed to break down the early, mid, and late stages of ALS using a severity-based staging algorithm developed with input from neurologists. Among the patients, 1,215 were deemed to have early-stage disease at the time they were diagnosed, with 864 at a middle stage, and 194 at a late stage.
In the early-stage patients, 9 of every 10 had shown symptoms of ALS before being diagnosed, suggesting a diagnostic delay. These symptoms included low energy or muscular signs such as twitching, difficulty speaking or walking, stiffness, poor balance, slow movements, poor coordination, and cramps.
Similar observations were made for patients in more advanced stages of the disease.
“These results … indicated that diagnosis tends to happen only after a lengthy period with ALS symptoms, as shown by the presence of early-, mid-, and, in some cases, late-stage symptoms occurring before a formal diagnosis was made,” the researchers wrote.
Researchers cite need for earlier diagnoses to reduce unnecessary costs
Among those with the disease in its early stage, 29% didn’t progress, whereas the remaining 71% progressed to the mid or late stage, or both. More than half of patients (56%) with mid-stage disease moved to the late stage. The 194 patients with late-stage disease stayed in that stage throughout.
The use of healthcare resources, including hospital admissions, outpatient visits, emergency department visits, and treatment prescriptions, significantly increased as ALS progressed. For example, the number of hospital admissions per patient in a year increased from 0.15 in the early stage to 0.23 in the middle stage and 0.74 in the late stage.
Annual healthcare costs increased accordingly, from $31,411 for early-stage disease to $51,481 for mid-stage and $121,903 for late-stage disease. This increase in the late stage was mainly driven by more frequent hospital admissions and their higher costs, according to the researchers.
Improvements to facilitate earlier diagnosis may enable more effective symptom management and intervention strategies to help improve outcomes, thereby reducing unnecessary [healthcare resource use] and costs.
The team noted that these costs do not include direct nonmedical costs, such as those related to home and transport modifications, supportive devices, testing, and assisted living. Nor do they include indirect disease costs, such as those related to lost productivity both for the individuals with ALS and any unpaid caregivers.
“Improvements to facilitate earlier diagnosis may enable more effective symptom management and intervention strategies to help improve outcomes, thereby reducing unnecessary [healthcare resource use] and costs,” the team wrote.
The researchers noted that a limitation of this study was assessing costs within the “relatively complicated U.S. payer system.” However, they noted among its advantages that the study’s framework allowed “for direct costs to be assessed across the disease” and included information “frequently missing in claims databases and other real-world data sources.”
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