What are the Treatment Options for Amyotrophic Lateral Sclerosis (ALS)?
This article was updated on: 10/20/2018
According to the National Institute of Neurological Disorders and Stroke (NINDS), amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive motor neuron disease that causes nerve cells to break down and die over time. These nerve cells are responsible for controlling voluntary muscles (muscle action we can control, like those in the arms, legs, and face); eventually, all muscles under voluntary control are affected and people with ALS lose the strength to move their bodies and even breathe on their own without ventilator support. Most people with amyotrophic lateral sclerosis pass away from respiratory failure within three to five years from when their symptoms began. However, about 10 percent of people with ALS live for 10 or more years.
According to NINDS, no cure for ALS has been discovered yet. There is one disease-specific prescription drug therapy, riluzole. Other treatments for people with ALS are designed primarily to help relieve their symptoms and make it easier to live with the disease.
What prescription drug treatments are there for ALS?
According to the National Institute of Neurological Disorders and Stroke (NINDS), the U.S. Food and Drug Administration (FDA) in 1995 approved the first prescription drug, riluzole (Rilutek), for ALS treatment; clinical trials showed that it prolongs life by several months for some patients and extends the time before the need for ventilation support. However, riluzole does not reverse motor neuron damage and the person must be monitored for liver damage and other side effects.
According to NINDS, if you or a loved one has amyotrophic lateral sclerosis (ALS), your doctor may prescribe prescription drugs to help relieve symptoms such as:
- Muscle spasms and cramping
- Spasticity (muscle stiffness or tightness)
- Excessive phlegm and saliva production
- Depression, sleep disturbances
What other treatments (besides prescription drugs) are involved for ALS?
NINDS recommends that the best supportive care for someone with ALS is provided by a multidisciplinary team of health-care providers like doctors; pharmacists; physical, occupational, and speech therapists; nutritionists; social workers; and home care/hospice nurses. These teams can recommend special equipment and design a medical and physical therapy plan that’s designed for you or a loved one you care for.
According to the NINDS, your health-care team may recommend one or more of the following (besides prescription drug treatments as described in the above section) as ALS treatment:
- Breathing care. As ALS progresses, the muscles that help you breathe can weaken, and ventilator assistance can help you breathe while you sleep. These devices may also be used full-time to assist your breathing. As your ability to breathe on your own declines, you may consider a form of mechanical ventilation (respirators). For long-term use, this would require an operation called a tracheostomy.
- Physical therapy. Physical therapy and special equipment can help you with pain, muscle stiffness, and mobility issues. Your physical therapist may recommend exercises that can strengthen muscles without overworking them.
- Occupational therapy. According to the Mayo Clinic, an occupational therapist can help you manage the hand and arm weakness that accompanies ALS to help you preserve your independence for as long as possible. He or she can recommend adaptive equipment to help you dress, bathe, and groom yourself independently and suggest computer technology you can use even if your hands are weak. According to NINDS, an occupational therapist can also suggest devices such as ramps, walkers, braces and wheelchairs to help you get around.
- Speech therapy. Working with a speech therapist, you can learn adaptive strategies to help you speak louder and clearer. There are also ways to communicate without producing vocal sounds, for example, with the help of speech synthesizers and computer-based systems.
- Nutrition support. A nutritionist can help you plan meals that provide enough nutrition and recommend foods that are easy to swallow. If you become unable to eat well enough to meet your nutritional needs, your doctor may recommend a feeding tube through your stomach.
- Counseling and support. According to the Mayo Clinic, you may work with a social worker or other health professional to help you manage the practical, financial, and emotional needs associated with treatment for ALS. Home care and hospice nurses can also help to provide palliative care.
Does Original Medicare cover treatment for ALS?
If you have amyotrophic lateral sclerosis (ALS), also called Lou Gehrig’s disease, you automatically qualify for Original Medicare, Part A (hospital insurance) and Part B (medical insurance), the month your disability benefits begin. If you need more information, please contact Social Security, or if you worked for a railroad, the Railroad Retirement Board. You can call Social Security at 1-800-772-1213 (TTY users 1-800-325-0778); representatives are available Monday through Friday from 7 AM to 7 PM. If you worked for a railroad, you can call the Railroad Retirement Board (RRB) at 1-877-772-5772 (TTY users 1-312-751-4701); representatives are available Monday through Friday, 9AM to 3:30PM.
If you’re enrolled in Original Medicare (Part A and B), Medicare Part B will help pay for medically necessary treatments, supplies, and equipment; typically, your costs will be 20% of the Medicare-approved amount, along with paying the Part B deductible and any applicable copayments. Once you have Original Medicare, treatment you receive as an inpatient in a hospital or nursing facility is covered under Medicare Part A after you pay a deductible. If you meet certain conditions, hospice care is also covered under Part A.
Doctor visits, medical equipment and supplies (durable medical equipment), and procedures performed on an outpatient basis may be covered under Medicare Part B. Durable medical equipment includes oxygen equipment and accessories that you rent for use in your home; please see the oxygen therapy article for more information. Medicare Part B also helps pay for limited outpatient physical and occupational therapy and speech-language pathology services.
Does Medicare cover prescription drugs?
Prescription drug coverage is limited under Original Medicare, but you may sign up for a stand-alone Medicare Part D Prescription Drug Plan to work alongside your Original Medicare benefits.
Another Medicare plan option that includes prescription drug coverage is a Medicare Advantage Prescription Drug plan. Medicare Advantage (Part C) offers an alternative way to get your Original Medicare benefits (except for hospice care, which is still covered by Part A). A Medicare Advantage Prescription Drug plan offers the same benefits as Original Medicare, alongside prescription drug coverage. Please note that you’ll need to continue paying your Medicare Part B (medical insurance) premium, along with any premium the Medicare Advantage plan requires, and any coinsurance, copayments, and deductibles.
If you have questions about Medicare plan options and ALS treatment coverage, I’m happy to talk with you. If you’d prefer, you can schedule a telephone call or request an email by clicking one of the links below. To see a list of plan options in your area you may qualify for, click the Compare Plans button. Click on the “View profile” link to learn more about me.
For more information about ALS treatment, please see:
“Amyotrophic Lateral Sclerosis (ALS) Fact Sheet,” National Institute of Neurological Disorders and Stroke (NINDS), last modified March 14, 2016, http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm