High healthcare costs for myasthenia gravis patients, carers
People with the chronic illness face mean annual expense of nearly $16K
People with myasthenia gravis (MG) face a mean annual healthcare cost of nearly $16,000, according to a survey of MG patients and their caregivers.
Medications and treatments accounted for most out-of-pocket expenses (27%), followed by insurance premiums (20%), diagnosis (15%), and caregiving assistance (14%).
“Disseminating the findings of this survey to clinicians, insurers, advocacy organizations, and policy-makers will help to improve awareness of MG-associated burden and encourage policies to address this burden, with the ultimate goal of improving the lives of people with MG and their families,” the researchers wrote.
The study, “The Economic Burden of Myasthenia Gravis (MG): A Survey of Affected People and Their Families,” was published in Muscle & Nerve.
Managing a chronic illness like MG places a significant financial strain on patients, caregivers, and families, as shown by health insurance claims. Patient-reported surveys let researchers grasp “the economic burden of MG from the perspective of affected people and their families,” wrote the researchers.
This survey, by the Muscular Dystrophy Association, was conducted online between October and December 2021 with the support of Argenx MG Advocacy Leadership Council. It examined both the direct and indirect costs associated with MG care, as well as the disease’s impacts on daily life. Other themes addressed included financial decisions, quality of life, employment, the direct and indirect costs of diagnosis, healthcare insurance, medical visits, medications and treatments, medical equipment and devices, and caregiving.
Adding up the costs of MG
In total, 1,038 respondents (mean age, 55.7; 57% women) completed the survey, of whom 800 (77%) were patients and 238 (23%) were caregivers.
The respondents most commonly reported dissatisfaction with their physical health (54% were “not satisfied”), leisure time (42% were “not satisfied”), and financial health (38% were “not satisfied”). Their most prominent economic worries were the costs of medication and medical care.
They were most satisfied with education (54% were “very satisfied,” 32% were “somewhat satisfied”), family life (44% were “very satisfied,” 42% were “somewhat satisfied”), receiving support from others through their MG journey (33% were “very satisfied,” 49% were “somewhat satisfied”), and the ability to live independently (32% were “very satisfied,” 41% were “somewhat satisfied”).
The mean annual cost of care for MG patients was nearly of $16,000, with the highest out-of-pocket expenses related to medications and treatments (mean, $4,730.76), insurance premiums (mean, $3,502.46), diagnosis (mean, $2,511.04), and caregiving assistance (mean, $2,359.91).
Most respondents reported they or the person they cared for were taking one or more medications, with pyridostigmine (sold as Mestinon and available as generics) and corticosteroids being the most common. A total of 47% of the patients received regular drug infusions or plasma exchange therapy, a type of blood-filtering treatment that’s intended to remove the self-reactive antibodies that drive MG.
While insurance often covered medical visits and diagnostic testing, coverage was less consistent for infusions and assistive devices. Coverage for medications and infusions faced the most resistance from insurers.
Patients went to four different clinicians before receiving a diagnosis, on average. MG patients had an average of 10 medical visits per year, with an out-of-pocket cost of about $1,500. Additional non-medical expenses included home modifications and assistive devices like canes, ventilator machines, and shower seats. An analysis of patients diagnosed within the last five years confirmed that reported costs remained consistent.
Higher out-of-pocket diagnostic expenses were reported among people of color (mean annual costs, $3,228.31 for non-white vs. $2,403.05 for white), as well as for people on disability leave (mean annual costs, 3,540.53 vs. $2,255.37), and women (mean annual costs, $2,934.26 vs. $1,975.63). Patients receiving infusions also faced significantly greater overall costs than those not receiving infusions.
Most MG patients had to forgo financial opportunities or seek financial assistance to manage MG-related expenses. Their disease also impacted employment, with more than a third of patients or caregivers reporting missed work, reduced hours, lower work quality, and lost wages due to MG.
The findings provide a “snapshot of the out-of-pocket costs and financial sacrifices associated with MG care and disparities in these expenses,” the researchers wrote.
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