Amyotrophic Lateral Sclerosis (ALS), often called Lou Gehrig’s disease, is a progressive neurological disease that causes motor neurons in the brain and spinal cord to degenerate, leading to muscle weakness and eventual paralysis. Individuals diagnosed with ALS are granted immediate eligibility for Medicare as soon as they begin receiving Social Security Disability Insurance (SSDI) benefits. This waives the typical waiting period required for other disabilities, providing accelerated access to coverage for extensive medical management. Medicare, comprising several parts, helps cover the diverse care needs of ALS patients, including specialized outpatient services, essential equipment, facility-based care, and end-of-life services.
Outpatient Care, Therapies, and Equipment Coverage
Outpatient medical services are primarily covered under Medicare Part B. This coverage extends to necessary physician services, including regular visits with neurologists and other specialists who monitor disease progression and manage symptoms. Part B also covers diagnostic tests, such as electromyography (EMG) and nerve conduction studies, when deemed medically necessary.
Rehabilitative services are important for maintaining function, and Medicare Part B covers physical therapy (PT), occupational therapy (OT), and speech-language pathology (SLP). These therapies help patients maintain mobility, manage daily tasks, and preserve communication abilities as muscle control declines. Coverage requires a physician’s order and the skill or supervision of a licensed therapist.
Durable Medical Equipment (DME) is also covered by Medicare Part B. DME includes items necessary for use in the home that can withstand repeated use and serve a medical purpose. For ALS, this frequently involves power wheelchairs, specialized hospital beds, and respiratory equipment like BiPAP or CPAP machines.
Medicare requires a physician’s certification of medical necessity for all DME items. Medicare pays 80% of the approved amount, and the patient is responsible for the remaining 20% coinsurance after the annual Part B deductible is met. For certain expensive items, Medicare often covers the cost through a rental agreement before ownership is transferred to the patient.
Inpatient Hospital Stays and Skilled Nursing Care
Facility-based care falls under Medicare Part A, which acts as hospital insurance. This coverage is for acute episodes or periods requiring intensive medical attention. Part A covers the costs associated with inpatient hospital stays, including a semi-private room, meals, general nursing services, and necessary drugs administered during the stay.
Patients are responsible for a deductible for each “benefit period,” which begins upon hospital admission and resets after 60 consecutive days out of a facility. After the deductible is met, Medicare fully covers the first 60 days of an inpatient stay. Coinsurance payments start on day 61 and increase after day 90, utilizing a limited number of “lifetime reserve days.”
Part A also covers care in a Skilled Nursing Facility (SNF) when required for skilled rehabilitation or maintenance care. SNF coverage is contingent upon a qualifying hospital stay of at least three consecutive days. Medicare fully covers the first 20 days of a covered SNF stay within a benefit period.
A daily coinsurance payment is required for days 21 through 100 of the SNF stay, and coverage ceases after 100 days per benefit period. Medicare Part A does not cover long-term custodial care, which involves assistance with daily living activities that does not require skilled personnel.
Prescription Drug Coverage and Hospice Services
Outpatient medications used to manage ALS are covered through Medicare Part D, the prescription drug benefit, or through a Medicare Advantage Plan (Part C) that includes drug coverage. ALS-specific drugs, such as Riluzole and Edaravone, are typically covered under Part D when self-administered by the patient at home. Part D plans are provided by private insurance companies and involve monthly premiums, deductibles, and cost-sharing.
Coverage for certain ALS treatments, such as intravenous Edaravone infusions, may be covered under Part B if administered in a physician’s office or outpatient setting, with Medicare paying 80% of the cost. Patients should review the plan’s formulary to ensure their specific ALS medications are covered, as costs can change annually. Recent changes allow patients to spread their out-of-pocket prescription drug costs over the year through the Medicare Prescription Payment Plan.
When an ALS patient is certified as terminally ill with a life expectancy of six months or less, Medicare Part A provides comprehensive hospice services. Hospice care focuses on pain management and comfort care, rather than curative treatments. This benefit covers services like medical equipment, physician services, nursing care, and counseling, often provided in the patient’s home.
The hospice benefit requires the patient to choose comfort-focused care in place of standard curative coverage. While Part A covers the hospice team’s services, it generally does not cover the cost of room and board if the patient resides in a nursing home or assisted living facility. Hospice can be provided wherever the patient resides.