To all our SMA families, volunteers, sponsors, and supporters, we want you to know that Cure SMA is here for you. Cure SMA remains vigilant in monitoring and responding to the needs of the SMA community, as your health, safety, and well-being are our top priority.
The following FAQs are designed to help address key concerns expressed by members of the SMA community about COVID-19 and provide additional information about how you can protect yourself and your family. We encourage you to refer to the Centers for Disease Control and Prevention (CDC) for the most up-to-date information.
To read all Cure SMA communications and guidance to date, visit the Cure SMA Coronavirus (COVID-19) Information Center. If you have any questions, please email [email protected].
Frequently Asked Questions
This new question was added on April 27
If I develop symptoms suggestive of COVID-19, when should I call my doctor?
For people with SMA who develop symptoms suggestive of COVID-19, please contact your healthcare team to let them know. Please seek emergency healthcare if you experience trouble breathing and/or trouble speaking, persistent chest pain or pressure in the chest, new confusion or difficulty waking, or bluish lips/face or low oxygen saturations that do not improve with secretion removal and coughing or usual home breathing support if used. If you use at home breathing support and/or feeding support, please take your home equipment with you.
These new questions were added on April 2
One person in the household goes to work outside the home, while others are at home. How do we control exposure?
It is recommended to create a “transition space” in your home, such as an entryway or mud room, that is used to take off clothes after returning from travel or work and to wash and/or shower before joining the rest of the family, as long as they are healthy. If the person who works outside the home has been exposed to someone with known COVID-19 or are a healthcare provider, they should self-quarantine, stay in a part of the home separate from others, frequently wash hands, and use separate drinking and eating utensils and dishes. Clothes should be washed and dried in the hottest temperature tolerable for the fabric. Don’t shake out clothes, as this can put the infection into the air. If this person feels ill, they should wear a face mask and self-isolate from the rest of the family.
We receive supplies, mail, and packages into our home. How do we manage?
The virus, SARS-CoV-2, has been demonstrated to survive on plastic and stainless steel for up to 72 hours. On cardboard, the virus is gone after 24 hours. For packages and supplies received in the home, we recommend wiping down with antibacterial wipes as is feasible. For produce, wash your hands and then rinse fruits and vegetables well with cool running water. Leafy greens should be rinsed in a bowl of cool water. Peel produce after rinsing. Do not use soap or disinfectants on food.
How long should we quarantine if we are exposed vs. how long should we isolate if we are sick?
If you discover you are positive for COVID-19 or exhibit symptoms of COVID-19, isolate for at least 7 days after symptoms start AND isolate for 3 days after fever is resolved and breathing symptoms (e.g., cough, difficulty breathing, etc.) are nearly resolved, whichever is longer. If you are exposed to someone with COVID-19, quarantine yourself for 14 days.
I heard that I should not use ibuprofen if I may have COVID-19?
Avoiding ibuprofen was recommended by the French Health Minister and this statement has subsequently been challenged as not having enough evidence to support. People taking ibuprofen and other non-steroidal anti-inflammatory drugs (NSAIDs) for other reasons should not stop taking for fear of increasing their COVID-19 risk. During illness, discuss use of NSAIDs and acetaminophen with your physician.
I heard that I could use hydroxychloroquine or chloroquine with a Z-Pak (azithromycin) to treat or prevent COVID-19?
Hydroxychloroquine and chloroquine are medications to prevent and treat malaria, as well as treat autoimmune disorders. These medications are only beginning to be studied for possible use against COVID-19. One study in France found that patients who took hydroxychloroquine with an antibiotic (azithromycin) cleared the virus from their bodies more quickly. Hydroxychloroquine studied in a small number of patients in a randomized, controlled study in China did not find a difference in recovery rates. Hydroxychloroquine is being studied in the U.S. in people hospitalized with COVID-19. Hydroxychloroquine side effects include headache, dizziness, nausea, diarrhea, stomach cramps, anxiety, mood changes, heart rhythm changes, and can interact with other medications. Hydroxychloroquine and chloroquine are not approved for COVID-19 treatment or prophylaxis. Due to considerations to keep everyone safe during this time of uncertainty, and a lack of testing in people with SMA, use of hydroxychloroquine and chloroquine is not recommended unless part of your participation in a clinical trial.
Should we be concerned about protocols that exclude SMA patients from critical care in hospitals? How is Cure SMA getting involved to not allow that to happen?
To date, we are not aware of exclusions to care, or hospital bed limitations. The shortages have been with personal protective equipment for healthcare providers. Because of the information you provided on the annual community survey about how SMA is changing, Cure SMA was able to share that information with the states and strongly recommended reevaluation and revision of any triage policies they have in place that may be discriminatory to people with SMA. See your state’s letter here.
We are running out of disinfecting wipes. Can we make our own?
To make your own disinfecting wipes, and for additional information about home ventilation and COVID-19 please see this resource on Care Recommendations for Home‑Based Ventilation Patients.
Someone called and offered me hand sanitizer and masks, and said I could use my Medicare or Medicaid benefits?
Anyone who contacts you to sell you hand sanitizer, gloves, masks, or other protective equipment during this time is highly suspicious for being a scam. If it sounds too good to be true, it probably is.
It was reported that nebulized medications should be avoided if you have COVID-19. Is this true?
Nebulized medications generate small aerosolized particles that can carry bacteria and viruses into the deep lung. The risk of infection transmission via droplet and aerosols may increase during nebulizer treatments because of the potential to generate a high volume of respiratory aerosols that may be propelled over a longer distance than a typical dispersion pattern. The nebulized mediation may also stimulate the patient’s cough, thus increasing possible spread of infection if present. If nebulized medications are used with someone who may have COVID-19, use personal protective equipment and social distancing to avoid spread.
Will getting the pneumonia shot or influenza shot lessen the effect of COVID-19?
Receiving the influenza vaccine will help prevent influenza infection. The pneumonia shot, also known as Prevnar 13 and Pneumovax, will help prevent a common bacterial pneumonia. Both of these infections can complicate having COVID-19. In addition, if fewer people develop influenza due to being vaccinated healthcare resources will continue to be focused on identifying and managing COVID-19.
How will quarantine affect Spinraza dosing?
Quarantine may result in a delay in your ability to receive Spinraza. Typically quarantine lasts for two (2) weeks. A delay of two (2) weeks is acceptable.
I heard that some people are reporting loss of smell and taste. What does this mean?
Sudden loss of smell and/or taste has been determined as symptoms of COVID-19. If you experience sudden loss of smell and/or taste, isolate yourself from others, and contact your healthcare provider. Other symptoms recently added to the list of COVID-19 symptoms include chills, repeated shaking with chills, muscle pain, headache, and sore throat.
How should the SMA community interpret the information that people under 20 appear less impacted by COVID-19?
COVID-19 seems to be impacting all ages in the U.S. However, elderly and those with underlying health conditions, such as SMA, are at higher risk. All viral illnesses cause fatigue. In SMA the fatigue caused by a viral illness translates into worse muscle weakness.
These questions were originally posted on March 18
Are people with SMA at increased risk for COVID-19 infection?
Evidence has shown that people with underlying health conditions may be at greater risk of serious illness from COVID-19. The CDC has issued guidelines for people who are at higher risk. General recommendations include:
- Stay at home as much as possible to further reduce your risk of being exposed. As possible, other members in the household should also stay at home.
- Stock up on supplies, such as antibacterial wipes, medications, hand sanitizer, equipment supplies, formula, and feeding supplies.
- Take precautions to keep space between yourself and others.
- If you go out in public, take precautions to keep 6 feet of space between yourself and avoid contact with others (i.e., shaking hands, touching, etc.). Also wear cloth face coverings over the mouth and nose for everyone over 2 years of age. The public should use non-medical cloth masks, while surgical masks and N95 masks/respirators should be reserved for healthcare providers.
- Avoid crowds or large gatherings.
- Avoid cruise, non-essential air travel, and travel to high risk locations.
- Use disinfectants to clean surfaces only. Do not ingest disinfectants or bleach, or put on food.
Contact your healthcare provider for specific questions about your health. Check the CDC website for complete guidelines and up-to-date information.
How can I protect myself and my family?
The best way to protect against respiratory illness, including COVID-19, is to continue to practice good health habits.
- Stay at home as much as possible to further reduce your risk of being exposed. As possible, others in the household should also remain at home.
- Avoid others who are sick.
- Frequently wash hands with soap and water for at least 20 seconds or use alcohol-based hand sanitizer with at least 60% alcohol base.
- Avoid touching eyes, nose, and mouth.
- Cover coughs and sneezes with tissue, throw away the tissue and wash hands.
- Disinfect frequently touched surfaces regularly.
- Avoid shaking hands, hugging, and kissing.
- If you become ill, stay home and call your doctor’s office to discuss symptoms. Try to stay out of healthcare facilities.
Should I wear a face mask?
As of April 3, the CDC recommends that when in public settings, people should continue to implement social distancing (at least 6 feet) and in addition, people should wear cloth face coverings over their mouth and nose. This recommendation is based on new information from studies that demonstrate people who are infected with COVID-19 but do not have symptoms could transmit the virus to others. The CDC recommendation is to use non-medical cloth masks. Surgical masks and N95 masks/respirators are in short supply and reserved for healthcare providers.
Is it safe for me to go to work or school?
We recognize that every individual’s circumstances are unique. Questions about your personal risk factors should be directed to your healthcare team, who can help you determine if you should take additional precautions.
- School: We strongly recommend that children with SMA stay home from school. Virtual learning or other remote options should be considered in all cases, and most schools across the country are accommodating this need.
- Work: We strongly recommend that adults with SMA work remotely whenever possible.
Is it safe for me to continue going to clinic visits?
People with SMA should continue their usual care routine, unless otherwise guided by your healthcare provider. The American Academy of Pediatrics recommends prioritization of in-person visits for newborn care, newborn well visits, and immunization of infants and young children through 24 months of age whenever possible. Other routine well-visits should be conducted by telehealth approaches or postponed whenever possible. Healthcare teams have been asked to think creatively—such as avoiding time in waiting rooms—to avoid unnecessary risk of exposure and pressure on their staff and healthcare facilities.
My next dose of Spinraza has been postponed. What should I do?
Receiving Spinraza on time is a high priority. But there may be other complicating priorities that result in delays. We would generally recommend that getting doses as close to schedule is important. A few weeks delay should not have a huge impact, as there may be specific personal health status issues or local COVID-19 issues that could influence your timing options. If your scheduled Spinraza dose has been delayed, please work closely with your healthcare provider team to reschedule the Spinraza dose for as soon as reasonably possible and resume the previous schedule. We do not recommend viewing Spinraza doses as elective or non-urgent and dosing should not be delayed for a significant period of time.
My child is scheduled to receive treatment with Zolgensma. Should I proceed?
Receiving Zolgensma is a high priority. Every precaution should be taken to avoid exposure to COVID-19. Some communities have very high rates of COVID-19, resulting in strain on the healthcare system and interfering with being able to receive Zolgensma as planned. Planning to receive Zolgensma should include strategies to avoid possible exposures to COVID-19, such as avoiding waiting rooms and being placed in a procedure room shortly after arrival. Please work with your healthcare provider to schedule administration as soon as possible and ensure safety to receive Zolgensma. We do not recommend viewing Zolgensma treatment as elective or non-urgent and dosing should not be delayed for a significant period of time.
Am I at increased risk for COVID-19 because I had Zolgensma?
While taking prednisone/prednisolone, which can temporarily suppress the immune system, people should be considered at higher risk for serious illness from COVID-19 and should take all recommended precautions very seriously. We are not aware of any specific information regarding COVID-19 among people who have received gene therapy, including Zolgensma.
I am not currently on a treatment, but I am working with my healthcare provider to obtain approval to start treatment. What should I do?
Receiving an FDA-approved treatment for SMA as quickly as possible is a high priority. Continue to work with your healthcare provider to obtain approval and schedule dosing for as soon as reasonably possible. Planning to receive an SMA treatment should include strategies to avoid possible exposures to COVID-19, such as avoiding waiting rooms and being placed in a procedure room shortly after arrival.
Should I continue to have in-home health nursing and other medical professionals in my home?
Safety and avoidance of exposure to infections is paramount. Healthcare professionals in the home are often providing critical services to maintain health, safety, and function. Each person and their family will need to decide whether to continue having these in-home services. We realize adults with SMA who rely solely on caregivers cannot opt to cancel; therefore, whenever healthcare providers are in the home, ensure they wash hands frequently and have ready access to hand sanitizer and face masks. In-home healthcare providers should be free of symptoms.
How much should I stock up on supplies and medications?
We recommend having at least an additional two (2) weeks of medications and supplies on hand. This includes supplies for equipment, such as cough machines and other respiratory equipment, formula and feeding supplies, and any other regularly ordered supplies from durable medical equipment companies and suppliers.
What should I do if I am currently participating in a clinical trial?
If you are participating in clinical research, please be in communication with the research team about your study visits. Many studies are making changes that allow you to stay in the study while also making your safety a top priority.
This situation has caused a lot of anxiety in me and my family. What can I do?
Many people with SMA are experiencing anxiety because of all the uncertainty around COVID-19, particularly because of the higher risk among the community. In addition to guidelines for people who are at higher risk, the CDC provides information on coping with the fear and anxiety caused by the COVID-19 outbreak.
How do I get tested for COVID-19?
The CDC recommends that people who have symptoms of COVID-19 be tested. If you have symptoms of COVID-19 (e.g., fever, cough, shortness of breath), contact your doctor. Because the supply of testing kits is currently limited, many areas are only testing people who need to be hospitalized or healthcare workers who become sick. People who have not experienced symptoms, but are worried about getting COVID-19, are unlikely to be tested right away. Your doctor may recommend you be tested, and the CDC recommends doctors work with local and state health departments to coordinate testing through public health laboratories.