When Health Insurance Meets Reality for ALS Patients

Most people expect their health insurance to cover the high costs of amyotrophic lateral sclerosis (ALS) care. Yet even with Medicare coverage, Medicare Advantage plans, or private insurance, ALS patients face overwhelming healthcare costs. The ALS Association reports that people living with ALS often spend $80,000 to $250,000 per year out of pocket on medical care, durable medical equipment, and home support services despite insurance coverage (ALS News Today).

Medicare beneficiaries automatically qualify for Medicare benefits after an ALS diagnosis or Social Security Disability Insurance (SSDI) approval, but even then, coverage falls short. Medicare Part B pays about 80% of approved durable medical equipment costs, leaving the rest to the patient (ALS Association). Items like home modifications, advanced communication devices, or full-time caregiving often sit outside the Medicare system and private insurance company policies. .

Bills arrive faster than approvals. Coverage promises shrink when the fine print appears. Families discover that Medicare benefits and private insurance don’t stretch far enough to cover every medical expense. What remains are choices, which therapies to keep, which supports to delay, and how to stay financially steady as the disease progresses. For many people living with ALS, that balance between care and cost defines survival more than any treatment plan ever could.

When “Covered” Doesn’t Mean Secure: The Truth About Health Insurance and ALS

Health insurance providers promote broad protection, yet Medicare beneficiaries soon find that every benefit has conditions. Original Medicare pays for hospital stays and inpatient hospital care, but when an ALS diagnosis changes what “necessary” means, many medical expenses slip outside the Medicare system. Medicare Part B may handle durable medical equipment, yet families still face 20% of every charge. Even Medicare Part C and Medicare Advantage plans rely on private insurance companies that set their own coverage policies, plan formulary, and monthly premiums.

The reality deepens when prescriptions enter the picture. Medicare Part D and the Medicare drug benefit often exclude particular drugs or place them in higher cost tiers. That means ALS patients still pay steep out-of-pocket costs for necessary medications that sustain quality of life. Prescription drug coverage under a Medicare prescription drug plan varies by state and insurer, forcing people living with ALS to evaluate plans during each Medicare open enrollment period. For those depending on Social Security Disability Insurance (SSDI) to receive Medicare coverage, the lag between approval and benefits can feel endless.

Reality Check: Even with government administered plans, “covered” rarely means “paid.” Every form, every coverage gap, and every delay chips away at what ALS patients thought security would feel like.

Save time and effort and see if you qualify for a viatical settlement with American Life Fund.

Durable Medical Equipment and the Limits of Medicare Benefits

For people living with ALS, independence often depends on durable medical equipment. Power wheelchairs, lifts, and speech devices aren’t luxuries. They’re lifelines.

What Medicare Covers

Under Medicare Part B, this equipment is considered medically necessary, but coverage only reaches 80% of the approved cost. The remaining 20% becomes an out-of-pocket expense that can total thousands per item. Even Medicare beneficiaries renting before owning face added monthly healthcare costs.

“Durable medical equipment is covered under Part B at 80% of the approved amount.”
— Medicare.gov

Where Coverage Stops

Medicare Advantage and Part C plans promise “expanded” options, yet many mirror Original Medicare restrictions. Private insurance companies may add their own coverage policies and plan formulary limits. Prior authorization delays mean weeks without essential tools while the disease progresses.

The Hidden Gaps

Home health coverage helps temporarily, but ends once therapy goals are met. Custom seating, home ramps, and mobility upgrades fall outside Medicare benefits. Even financial assistance programs and benefits counselors often can’t close every coverage gap. Families end up combining financial aid, personal savings, and community help just to keep up.

Type of Support	Usually Covered	Commonly Excluded
Medicare Part B	80 % of approved durable medical equipment	Installation, home modifications
Medicare Advantage / Part C plans	Similar benefits via private insurers	Prior-authorization delays, higher monthly premiums
Financial assistance programs	Partial grants or loans	Limited scope, complex eligibility

Reality Check: A wheelchair might arrive in three weeks. The ramp to use it may never be approved.

When the Disease Progresses Faster Than the Paperwork

ALS doesn’t wait for approvals. Strength fades while claims move from desk to desk. Each new symptom triggers another round of medical documentation, each change another form for Medicare coverage or SSDI verification.

Even though ALS patients automatically qualify for disability benefits, receiving them can take months. Medicare beneficiaries must often wait for Medicare Part B enrollment to activate after SSDI approval. During that gap, healthcare services, therapy programs, and prescription drug coverage are billed in full. The Medicare system guarantees access, but not immediacy.

Once coverage begins, the strain continues. Medicare Advantage and private insurance plans use prior authorization and coverage policies that require frequent resubmissions. Meanwhile, medical expenses accumulate for inpatient hospital care, home adaptations, and skilled nursing facility care. Some families turn to financial assistance or counseling services to deal with the process, while others simply pay out of pocket and move on.

By the time the paperwork clears, the patient’s needs have already changed.

Financial Safety Nets That Aren’t What They Seem

On paper, the system looks complete. Medicare, Social Security Disability Insurance, Medicare Advantage, and private insurance companies appear to create a network strong enough to catch anyone facing ALS. In practice, that net is full of holes.

The Myth of Disability Income

Social Security recipients who receive SSDI benefits average roughly $1,500 to $1,700 per month, according to the Social Security Administration. Even when combined with Medicare coverage, that income rarely meets monthly premiums, home health coverage needs, or prescription drug plan options that demand co-pays on crucial medications. A single powered wheelchair can exceed $30,000, and skilled nursing facility care can run $8,000 to $12,000 per month.

When “Comprehensive” Isn’t Enough

Medicare Part D, Medicare Part B, and Medicare Advantage plans all contribute portions toward medical care, therapy services, and prescription medications, yet coverage rarely extends to long-term skilled nursing facilities or full-time caregivers. Government administered plans were built for stability, not progression. As the disease progresses, out-of-pocket costs climb while financial assistance programs demand more bureaucracy than relief.

`Reality Check: A network designed for the average retiree cannot sustain the pace or cost of ALS.

Even private insurance markets mirror the same limitations. Their coverage policies restrict additional benefits once a patient enters hospice care or long-term skilled nursing care. That leaves people living with ALS managing confusing lists of approved medications and denied claims, while benefits counselors only advise them to review their coverage options when Medicare open enrollment comes around again.

For many families, these systems don’t fail out of cruelty; they fail by design. They were built to manage chronic illness, not an accelerating one.

When Insurance Can’t Carry It All

The paperwork may eventually slow but the invoices don’t. Families realize that even with Medicare coverage and private insurance, the numbers stop making sense long before the care does.

The Biogen U.S. cost study showed average annual spending climbing from about $31,000 in early ALS to over $122,000 in late stages. Those figures include medical care, therapy services, and prescription medications, but not the full cost of home health coverage, skilled nursing facility care, or out-of-pocket medical equipment replacements. Even Medicare beneficiaries with Medicare Advantage plans and Medicare Part B still face uncovered medical expenses that strain household budgets. Every ramp, lift, and full-time caregiver adds more to what insurance doesn’t reach.

It’s not just money that drains. It’s time, focus, and a sense of control. Bills need signatures, policies need appeals, and benefits need proof, all while the disease progresses.

Even those who manage to access financial assistance programs or limited Medicare benefits find that national health insurance programs were never designed for a condition this demanding. The system covers pieces, not the whole. And in those missing pieces, people make impossible choices: what to keep, what to delay, what to let go.

For families balancing medicine and money, every day costs more than it should.

The Financial Option That Buys Back Control

When health insurance and Medicare coverage can’t keep pace with the costs of living with ALS, some families look for stability outside the system. A viatical settlement converts an existing life insurance policy into immediate cash. For ALS patients, it’s one of the few financial options that doesn’t add stress, paperwork, or delay.

Unlike financial assistance programs or government administered plans, a viatical isn’t a loan or charity, it’s an asset exchange. The policyholder sells their life insurance to a licensed provider for a lump-sum payment that can reach a significant percentage of the death benefit’s value. That money is then theirs to use freely for medical care, therapy services, hospice care, or simply maintaining dignity and comfort.

Typical eligibility and structure

• Must hold an existing life insurance policy with at least $200,000 in face value.
• Almost all policy types qualify: term, universal, whole life, or group coverage.
• The insured must have an ALS diagnosis or another qualifying condition
• Settlement values can be up to 70% of the policy’s face value, depending on diagnosis, policy size, and premium structure.
• Funds from a viatical settlement are typically tax-free when the seller is chronically or terminally ill under IRS guidelines.

Read our full eligibility criteria

How it helps where insurance stops

Families often use viatical proceeds to cover out-of-pocket medical expenses, home modifications, or unpaid durable medical equipment costs left by Medicare Part B or private insurance. It also frees caregivers from chasing financial aid forms and lets them focus on time, not paperwork.

For many ALS families, a viatical settlement doesn’t just pay bills, it restores breathing room, control, and choice.

The Power of Knowing Before the Bills Arrive

Insurance was never meant to be the enemy. Medicare, private insurance companies, and national health insurance programs exist to help, but help often comes slowly, wrapped in forms, conditions, and time limits. For people living with ALS, that process can feel like another full-time job. Every claim demands proof, every upgrade an appeal, and every new stage of care another letter in the mail.

The system isn’t broken; it’s just not built for lives that move this fast. Medicare beneficiaries can still find value in Medicare Advantage or Medicare Part B, and financial assistance programs can bridge smaller gaps. Yet the truth remains: paperwork takes time, and time is what most ALS patients can’t afford to lose.

That’s where American Life Fund steps in. For families who want stability without delay, a viatical settlement turns a life insurance policy into direct support, quickly, confidentially, and without penalty. 

Contact American Life Fund

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