ALS, amyotrophic lateral sclerosis, is a progressive and fatal disease that affects nerve cells of the brain and spinal cord, and it eventually leads to the loss of muscle control.
In the United States, there are about 20,000 people living with ALS, and 5000 new diagnoses every year. ALS typically occurs when a person is between 40 and 70 years old, but the average age when symptoms begin is 55.
Not all people with ALS experience the same symptoms because the disease affects different nerve cells, but some of the most common symptoms include the following:
- Muscle twitching and weakness
- Difficulty chewing or swallowing
- Difficulty breathing
- Slurred speech
- Muscle cramps
- Unwarranted laughing, yawning, or crying
- Changes in behavior
- Difficulty performing daily activities
Because ALS is a progressive disease that leads to loss of muscle control, patients need various forms of health care services to help them manage their symptoms while improving their quality of life.
Fortunately, Medicare insurance provides coverage for many of these vital services for those who have been diagnosed with ALS, no matter what age they are.
Does Medicare cover people living with ALS?
If you’re already enrolled in Medicare due to meeting the age requirements, you have access to coverage for all health care services that are available for all enrollees.
If you are younger than 65 and have been diagnosed with ALS, you can enroll in Medicare and receive all the benefits that you are eligible for. In order to get these Medicare benefits you first need to qualify for Social Security Disability Insurance (SSDI) and begin receiving SSDI benefits.
Although most people who qualify for Medicare through SSDI need to wait for 24 months before Medicare enrollment, this is not true for those with ALS. As soon as you get a diagnosis of ALS, you can submit your application form for SSDI benefits with the Social Security Administration or the Railroad Retirement Board if you are employed by the railroad.
After the SSA accepts your application, you’ll have to wait for five months before your SSDI benefits begin. On the same month that your SSDI benefits begin, your Medicare coverage begins. You can enroll in Original Medicare Parts A (hospital insurance) and B (medical insurance) or a Medicare Advantage (Part C) plan. You can also enroll in a stand-alone Medicare prescription drug (Part D) plan if you have Original Medicare, or if your Part C plan doesn’t include prescription drug coverage.
What services will Medicare provide for people with ALS?
Whether you have Original Medicare Parts A and B, or you have a Part C plan, you have coverage for all regular benefits plus access to the following health care benefits specifically for ALS:
- Prescription medications that slow the progression of muscle deterioration
- Prescription medications that help manage physical symptoms of ALS
- Physical and occupational therapy sessions to help you remain mobile with or without assistance
- Skilled nursing care
- A medical care team led by your neurologist
- Help with custodial care including bathing, eating, dressing, using the bathroom, etc.
- Mobility assistance equipment
- Feeding devices
- A CPAP machine
- A ventilator
Original Medicare Part A pays for health care services that you receive while you’re an inpatient in a hospital that accepts Medicare assignment after you cover your Part A deductible for the current benefit period.
Original Medicare Part B covers its share (typically 80 percent) of outpatient health care services and durable medical equipment that you’re eligible for. You pay the remaining 20 percent after covering your annual Part B deductible.
Medicare Advantage (Part C) plans are offered by private insurance companies that work with Medicare. Each Part C plan has the right to set its own premiums, deductibles, copayment amounts, and coinsurance charges. Also, your plan may require that you use physicians, health care providers, medical facilities, hospitals, and medical suppliers that are in a specific network of providers. Many MA plans offer additional benefits above those included in Part A and Part B.