AHDS is a devastating condition affecting children and results in significant healthcare needs and lifelong dependency
Besides the overwhelming nature of the disorder and the toll that it takes on the patient and the family, the costs of MCT-8 deficiency (Allan-Herndon-Dudley syndrome) are significant economically and socially. This is primarily due to its impact on patients, families, and healthcare systems.
Direct Medical Costs
Hospitalizations & Emergency Care
Patients may require multiple hospital visits per year for issues like respiratory distress or infections. An average hospitalization can cost from $2,000 to $10,000 per stay, depending on severity.
Specialist
Visits
Ongoing care from neurologists, endocrinologists, and other specialists can cost $200-$500 per visit. With frequent visits, these costs can add up to several thousand dollars annually.
Medications &
Therapies
While there is no cure for MCT-8 deficiency, medications for managing symptoms and physical therapy sessions may cost $5,000-$15,000 per year.
Long-Term Care &
Assistive Devices
Patients may require mobility aids (e.g., wheelchairs, braces) and modifications to their home, adding thousands of dollars in one-time and recurring costs.
Indirect Medical Costs
Caregiver Costs
Families often become primary caregivers, which can result in significant lost wages. A full-time caregiver can spend upwards of 40 hours a week on care, which translates to about $30,000-$50,000 in lost wages annually.
Educational Support
Specialized education services, including tutors, special education classes, and therapy, may cost $10,000-$50,000 per year depending on the child’s needs.
Transportation & Travel
Due to the need for frequent appointments with specialists, travel costs can range from $1,000 to $5,000 per year.
Societal Costs
Caregiver & Family Burden
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The strain on caregivers and families often leads to increased rates of anxiety, depression, and burnout, with potential treatment costs for mental health services.
Many families of rare disease patients report feelings of isolation due to the lack of local support groups. This can lead to further emotional costs and diminished social well-being.
Reduced Quality of Life for Patients
Children with MCT-8 deficiency may experience significant delays in speech, motor skills, and cognitive development. This can result in lifelong dependence on caregivers, limiting the patient’s ability to contribute to the workforce or live independently.
The severe motor deficits can result in decreased mobility, requiring the use of wheelchairs or other assistive devices.
The condition can lead to early death due to complications such as respiratory failure, reducing the patient’s quality of life and placing additional emotional and economic strain on the family.
Healthcare System
The chronic nature of MCT-8 deficiency creates ongoing, high-cost demands on the healthcare system. If untreated, the costs of care will be higher due to worsening symptoms, hospitalizations, and emergency interventions.
Public health systems may bear much of the cost for rare diseases, especially in cases where individuals do not have adequate private insurance coverage.
Opportunities for
Societal & Economic Impact
Investing in treatments for MCT-8 deficiency can lead to significant reductions in these costs by improving patient outcomes, reducing hospitalizations, and decreasing the long-term care burden. With an effective treatment, patients may experience greater independence and improved health, leading to lower medical and societal costs overall.
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Developing effective treatments can dramatically reduce these costs. Early diagnosis and treatment may improve mobility, speech, and cognitive outcomes, enabling a more independent life and reducing the burden on families and healthcare systems.
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At Alera Bio, we are committed to helping patients live full and productive lives, to helping families and caregivers in their journey to support and care for their loved ones, and to helping the overall costs to the healthcare system. To learn more about our treatment in development, click the button below.