What to Know About ALS and COVID-19

Amyotrophic lateral sclerosis (ALS) care has been substantially impacted by the COVID-19 pandemic. Patients, families, and healthcare professionals have made major adjustments to continue adequate ALS care, given the safety precautions needed to prevent virus transmission, coupled with the high level of medical attention required to manage ALS.

If you or your loved one is living with ALS, it is important that you maintain optimal management of your health, despite not seeing your healthcare team in person as often as you usually do.

If you develop symptoms of COVID-19, you should contact your medical team so you can be evaluated and treated before the illness causes serious complications.

ALS and COVID-19 Risk 

At the current time, there is no specific evidence to suggest that ALS increases the risk of contracting COVID-19. However, if you have ALS, several factors in your day-to-day life could lead to COVID-19 exposure. And respiratory muscle weakness due to ALS can make any respiratory infection, including COVID-19, very dangerous for you. 

Risk factors associated with COVID-19 in ALS include: 

• Health caregivers: The medical and caregiving assistance needed due to ALS disability often involves various therapists and medical professionals for adjustment of medication, feeding tubes, wheelchairs, and more. These interactions can increase your risk of exposure to the virus. 
• Diminished muscle tone: With ALS, you can have difficulty coughing and controlling your throat muscles. This may make it harder to clear the virus from your upper respiratory tract, potentially allowing the virus to enter the lungs and cause an infection. 
• Respiratory muscle weakness: ALS affects muscles throughout the body, including the muscles that control breathing. If you develop even a mild respiratory infection, it can have a substantial impact on your breathing—and it can be life-threatening. 
• Respiratory equipment: CO2 exhalation ports, vented masks, and full-face masks that aren’t well fitted can promote the virus’s spread during respiratory treatment, nebulization, suctioning, or cough assist. They are not a route for you to be infected, but if you are infected, you may exhale the virus and endanger your caregivers.

There is some evidence that people with ALS have worse outcomes with COVID-19. One large Veterans Administration registry found that people with ALS were three times more likely to die within 30 days of a COVID diagnosis compared to those without ALS.

Complications of ALS and COVID-19

If you have ALS, becoming infected with the virus that causes COVID-19 can lead to some specific complications:

• Pneumonia: The virus can lead to pneumonia, a lung infection that can make you feel run down and impair your breathing ability.
• Respiratory failure: If you develop a lung infection due to COVID-19 when your breathing muscles are already weak due to ALS, you can experience sudden respiratory arrest, which is an inability to breathe.
• Depression and anxiety: These symptoms have been increasing among people living with ALS during the pandemic. This has been attributed to social isolation.

The highly contagious nature of the virus and its potential for causing severe illness creates a difficult predicament. It is vital that you contact your healthcare provider if you or someone you live with develops any symptoms of COVID-19 illness.

ALS Treatments and COVID-19

There is no evidence suggesting that the medications used to treat ALS, Rilutek (riluzole), Radicava (edaravone), and Relyvrio (sodium phenylbutyrate/taurursodiol) could increase the risk of becoming very ill from COVID-19. 

Any monitoring that you might be getting regularly, including measures of your respiratory muscle strength and non-invasive testing of your oxygen level, is still necessary during the pandemic.

Some of your surveillance can continue with the use of technology that sends readings to your healthcare provider, and this can also potentially help identify early effects of infection with COVID-19.

Adjusting Ventilator Settings 

The American College of Chest Physicians (ACCP) has recommended adjustments to non-invasive ventilator equipment to reduce the risk of virus transmission to your caregivers. A respiratory therapist can set this up using a new ventilator or with the ventilator you already use with the direction of your neurologist or pulmonologist.

According to the ACCP recommendations, the tubing and mask circuitry should be converted to a closed system by using a double-lumen tube with a viral/bacterial filter and a non-vented full-face mask to restrict viral spread. Once the equipment settings are adjusted, you and your family can learn to use the modified equipment.

How to Stay Safe 

It is important that you do everything you can to avoid getting infected by the virus. This means receiving all recommended vaccines and boosters and avoiding contact with people who may be carriers. If you must go to a place where there will be other people who could be carriers, you should wear a mask, maintain at least 6 feet distance, and wash your hands.

Because ALS is a neurodegenerative disease that progresses quickly, you might have already experienced a decline in your muscle strength since the start of the COVID-19 pandemic.

If your muscle strength and tone have diminished during the pandemic, it is important that you get advanced medical support for your needs—rather than trying to get by with the support you have had prior to the pandemic. This can include splints, a wheelchair, respiratory devices, a feeding tube, and more.

Some of these interventions require in-person care for proper fittings or for a surgical procedure. All of these treatments would be done with infection precautions to prevent you from getting sick.

A Word From Verywell

Living with ALS is challenging, and some research suggests that widespread stress due to the pandemic might not have had a drastic effect on people living with ALS and their families because of the resilience that had already been built by coping with the condition. However, increased depression and anxiety have been reported.

It’s important that you remain vigilant in seeking attention for your health, emotional, and social concerns and that you reach out to your healthcare team to discuss any medical or psychological symptoms you are experiencing so you can get the care and services you deserve.

The information in this article is current as of the date listed. As new research becomes available, we’ll update this article. For the latest on COVID-19, visit our coronavirus news page.