COVID-19 Information for ALS Patients & Caregivers
For general information about COVID-19 and how to stay safe and healthy, please visit the main Mass General COVID-19 page and watch this Q&A video from Paul Biddinger, MD, director of the Massachusetts General Hospital Center for Disaster Medicine and Rochelle Walensky, MD, MPH, former chief of infectious diseases at Mass General.
Common Questions About COVID-19 and ALS
Here are some answers to common questions about how the COVID-19 outbreak may affect your ALS care.
Are there special concerns for people with ALS?
People with ALS often have weakened breathing muscles or difficulty controlling secretions. This can make it harder for the body to fight off lung infections, so it’s important for people with ALS and their family members to closely follow steps to protect themselves, especially when it comes to frequent handwashing. If you have specific concerns, we recommend you speak with your Mass General ALS team
Many people with ALS have additional people coming in and out of the home throughout the day to offer support. This could include home health aides, personal care assistants, visiting nurses, home occupational or physical therapists, friends and family, and even support groups like Meals on Wheels. It is very important to insist that supportive caregivers follow social distancing whenever possible and thorough hand hygiene, and, frequently wipe down high-touch surfaces (doorknobs, counters, toilet seats, etc)
What do I need to do if I am going to an appointment at the ALS Multidisciplinary Clinic in the Healey Center for ALS at Mass General?
Because people with ALS represent a vulnerable population for COVID-19, we are scheduling almost all visits by virtual video or phone visit. We are only seeing people in person if there is a medical issue we cannot understand or manage without an in-person visit. For example, we are continuing to see people with ALS for placement of feeding tubes, when indicated.
If you have cold or flu-like symptoms (fever, cough, difficulty breathing, sore throat, body aches, or chills), please call our office (617-724-3914) before coming to Mass General, even if you have an appointment or a procedure scheduled. We will ask you about your history and your symptoms. If you have been informed that you have recently been exposed to someone who later tested positive for COVID-19, please let the office know before coming in so that we can appropriately manage the situation.
If you are scheduled for an in-person appointment, our staff will make every effort to contact patients via phone the day before to pre-screen you for cold or flu-like symptoms, travel history, and COVID-19 exposure, and to use this information to provide direction about the appropriate course of action.
I am a new patient. Can I be evaluated at the ALS Multidisciplinary Clinic in the Healey Center for ALS at Mass General?
We are continuing to connect with and evaluate new patients in every case possible. Given the current circumstances, most or all of our new evaluations are occurring via video televisit, though some regulatory restrictions apply. Please call 617-724-3941 to speak with our clinic Patient Service Coordinators to help plan your first interaction with our clinic.
We are constantly re-evaluating our clinic restrictions, and we look forward to scheduling in-person New Patient visits again when the circumstances change.
Can I still have a feeding tube placed?
The decision about if and when to place a feeding tube is a complicated one. When a person with ALS and provider have come to an agreement to move forward, placement of a feeding tube is considered medically necessary. To reduce the potential for exposure as much as possible, we have made changes in our approach to these procedures. First, the required pre-procedure clinic visit will be performed via televisit. Second, many people who undergo feeding tube placement may be sent home from the hospital the same day, if they have recovered well and are stable in the hours following the feeding tube placement.
What are policies for visitors to the ALS Multidisciplinary Clinic in the Healey Center for ALS at Mass General?
As of Thursday, March 19, and until further notice, NO visitors will be allowed in the hospital due to COVID-19, with very limited exceptions.
We understand that some people with ALS may require support from a caregiver, and limited exceptions to the visitor policy will be made. People who qualify for an exception will be identified in a pre-screening call prior to their appointment, and patient and visitor names will be submitted to hospital Police and Security for access to the clinic. All visitors must be over the age of 18 and must not have any signs of respiratory illness such as fever, cough, or sore throat.
This is a difficult but necessary step to protect our patients and our staff who need to be able to deliver care. We understand that family members and friends are an important part of the healing process, and, when possible, we encourage patient use of mobile devices to stay in touch with loved ones during their stay.
What should I do if I develop symptoms that might be COVID-19?
- Always call 911 for a life-threatening emergency.
- For other situations, you must call ahead to the clinic or your primary care physician’s office for instructions about what to do to seek care and testing. Do not come directly to an urgent care clinic or emergency room to seek testing – only to seek care for life-threatening or concerning symptoms that need urgent management.
What should I do if I develop shortness of breath and/or increased secretions?
- If you have questions about your breathing, this is important. You can always reach out to our clinic team by Patient Gateway or phone (617-724-3914). If you have sudden or severe new or worsening symptoms or difficulty breathing, you should seek emergency care by calling 911.
- If you have a Cough Assist Machine: If you have an increase in secretions and you have a cough assist machine, you should use the cough assist machine regularly each day. If you do not have an increase in secretions or shortness of breath, you do not need to increase your use of the cough assist machine.
- If you have a non-invasive ventilation (NIV) machine (often referred to as “BiPAP”): If you have an increase in shortness of breath, you may use your BiPAP (NIV) machine more often than typical, including during the day. If you have questions about this, please let your providers at the clinic know.
- The vendor that delivered your NIV (BiPAP), cough assist, or suction machine can be an important resource in adjusting settings or troubleshooting machine problems. Please keep their contact information available.
- If you do not have a cough assist or NIV (BiPAP) machine and are having new or increased secretions or a troublesome change in your breathing please contact the clinic to discuss the appropriate next steps
What is happening with ALS research right now?
The COVID-19 pandemic has temporarily disrupted research. The studies that have been most disrupted are “observational studies,” meaning those that teach us about ALS, allow us to identify new targets for therapy or biomarkers, or understand how the disease progresses. Ongoing treatment trials are continuing, though we are adjusting visit schedules to keep participants and staff as safe as possible. Trials that have not yet started, including the Healey ALS Platform Trial, are continuing all activities related to study startup. While enrollment timelines may be temporarily impacted by the COVID outbreak, there is much behind the scenes work that we are doing to ensure that these studies are ready to go when we emerge from the current uncertainties of the COVID outbreak.
Webinars About COVID-19 and ALS Clinical Trials
Many of our patients are understandably concerned about delays in clinical research. We are committed to resuming trials as soon and as safely as we can, but what exactly that will look like is very much in flux these days. We hosted a webinar on April 8th to discuss the current state of the HEALEY ALS clinical trial, featuring panelist Reagan Healey, who has a message for us and for ALS patients and caregivers everywhere:
"I am really glad we could update you today and let you know of our neverending commitment you and your families.
I am in New York and every night this month at 7 pm the city erupts with cheering, drum pounding and clapping to thank our Healthcare professionals and all frontline workers during this Corona Crisis. It can be heard as a low rumble if you’re inside and then a thunderous chorus when you open a window.
But I am going to let you in on a secret: I scream and cheer for you all and for my brother Sean. And I want you to know that Sean and the Healey Center are and will continue to be the strongest voices on your behalf. We will put an end to the ALS crisis." – Regan Healey
You can also watch a recording of a March 27th webinar from NEALS on how COVID-19 is impacting ALS research here.
Patient & Family Resources
Our patient and family resources can help you understand and manage life with ALS.
A Word of Thanks
Much of our work in the ALS clinic is not covered by insurance payments. In these unpredictable times, we are more inclined than ever to thank those who support our clinic so that we can continue to provide care for people with ALS: Muscular Dystrophy Association (MDA), ALS One, EGL Foundation, and individual donations from people with ALS and their loved ones.