Amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s Disease, is a neurodegenerative disease characterized by a loss of muscle control that starts in the cells of the body. The results are devastating, with the patient eventually losing the ability to speak, eat, move, and breathe for themselves. While scientists have yet to find a cure for the debilitating disease, patients and their families are provided some financial relief through Original Medicare (Parts A and B) and any supplemental Medicare plans for which they’re eligible.
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Can Medicare Help With Amyotrophic Lateral Sclerosis (ALS)?
According to the ALS Association, legislation passed in late 2020 made those diagnosed with ALS eligible to receive Medicare benefits as soon as their diagnosis has been made. Once the patient is enrolled in Medicare, they have access to all of the benefits and resources that are usually reserved for those over 65 years of age. This includes home health services, durable medical equipment, plus support staff like skilled nurses and therapists.
When are ALS Patients Eligible for Medicare?
As of late 2020, patients can apply for Medicare immediately after diagnosis and receive coverage as long as they’re over 18 or meet the work history required to be eligible for Medicare.
Before 2020, those diagnosed with ALS had to wait 24 months before enrolling in Medicare and had to receive social security income benefits for an additional five months before being eligible for full Original Medicare coverage.
How Do You Enroll in Medicare When You Have ALS Under 65?
Signing up for Medicare after an ALS or end-stage renal disease diagnosis is advisable as the costs associated with the disease can be high. The first step to signing up for Medicare with ALS is to apply for Social Security Disability Insurance.
Social Security Disability Insurance, or SSDI, is a monthly benefit that people with disabilities collect when they can no longer work. Former railroad employees can submit their application to the Railroad Retirement Board instead. All applicants should state their ALS diagnosis on the application so it can be processed correctly.
Typically, Americans with disabilities must wait five months after they’ve applied to receive their first check for SSDI, then continue receiving the disability benefit for a further 24 months before they’re eligible for Medicare.
However, neither waiting period applies to those with ALS. ALS patients receive their payments for SSDI as soon as their applications are processed and are automatically enrolled for Medicare after their first railroad disability annuity check or SSDI check deposits.
Treatment Options for People With ALS
Home Health Care Coverage with Part A
Medicare Part A covers medically necessary home health care, hospital stays, and other skilled nursing care. This service includes help with a ventilator or intravenous infusions and injections.
Keep in mind that medically necessary home health care is different from custodial care. Whereas custodial care may be completed by an aide, like bathing and dressing patients, medically necessary care must be performed by a medical professional. This includes drug administration and assistance in recovering from a medical procedure such as surgery. For Medicare to pay for home health care services, the person providing the care has to be a medical professional. They also must be sent from a Medicare-approved agency or facility.
Therapy Support Coverage with Part B
Medicare Part B covers outpatient health care services and doctor’s appointments. These appointments include speech therapy, physical therapy, occupational therapy, mental health counseling, and any other types of support that an ALS patient may need.
Physical Therapy
Physical therapy is a movement therapy that seeks to restore a patient’s range of motion and keep muscles from deteriorating at an accelerated rate. Therapy sessions can include walking, biking, or swimming, as well as manually manipulating a patient’s limbs to lengthen and strengthen the muscles for increased flexibility. Physical therapists may also work with patients to develop training regimens to further their recovery, such as lifting weights or using exercise bands to improve strength.
While eventual muscle deterioration is unavoidable with ALS, physical therapy can help keep a person mobile for longer.
Mental Health Counseling and Therapy
An ALS diagnosis is life-altering, and the change from having a healthy body to one in decline can be difficult. Mental health counseling can help ALS patients process their feelings and thoughts so they may better cope. In addition, Medicare Part B may also cover mental health support for an ALS patient’s family members.
Speech Therapy
As ALS progresses from the brain and down the spine, a person’s speech and swallowing patterns will likely be the first bodily functions affected. ALS causes a person’s voice to sound more strained and breathy, while words come out slower and become harder to produce. A speech pathologist, which is covered by Part B, can develop a treatment plan to maintain patients’ ability to speak and express themselves for as long as possible.
Occupational Therapy
Occupational therapy is a movement therapy designed to help people keep the ability to do everyday tasks for as long as possible. The therapist provides either equipment, positions, or techniques to keep a patient’s space accessible. Adaptations can include a special spoon for feeding or a hook-type pole to help dress. It can also include special lifts or chairs to assist with standing and sitting.
Medicare will cover wheelchairs and ankle foot orthosis braces, or AFO braces, for patients when medically necessary. Because this equipment falls under the durable medical equipment (DME) category, any supplier the patient chooses must also be enrolled in Medicare for the equipment to be covered.
Medication Coverage with Part D
Those with ALS are eligible for Medicare Part D and can enroll when they enroll in Original Medicare. Medicare Part C or Medicare Advantage. Three medications are currently FDA-approved for ALS treatment. While none of them will cure ALS, they can increase a person’s life expectancy and ease the symptoms associated with the disease. Because the FDA has approved all of these medications, all Medicare Part D drug plans must help cover at least one of these options:
- Riluzole, also known as Rilutek, Exservan, or Tigutik kit, is an oral medication that can increase an ALS patient’s life expectancy by three to six months.
- Edaravone, also known as Radicava, is an intravenous or pill medication that can slow the decline of a patient’s daily function.
- Sodium phenylbutyrate and taurursodiol, also known as Relyvrio, is the newest addition to the FDA-approved medications. This medication also slows a patient’s decline and can improve a person’s ability to do daily tasks.
Without Part D, these medications can be prohibitively expensive. For example, Relyviro can cost $158,000 annually for those with ALS. With Part D, the out-of-pocket payment can vary based on the plan’s copay and coinsurance but would be significantly less than the cost without insurance.
Look Into Medicare Extra Help Eligibility
Medicare Extra Help is a program that helps those with limited resources pay for prescription costs. The program can help with Part D coinsurance, deductibles, premiums, and other expenses. Certain Part D recipients, like those with full Medicaid coverage, are enrolled automatically. Medicare recipients that need help with payments can apply for the program online.
Additional ALS Resources
Watching and experiencing the regression caused by ALS is difficult for everyone involved. One of the most vital parts of managing the disease is leaning on community support whenever you can.
- Answer ALS: Answer ALS is an online database that seeks to find as many answers about ALS as possible.
- ALS Association: ALS Association is another online database that provides resources to those affected by the disease. They also have regional branches where those with ALS can meet with their community.