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COVID-19 Resources

COVID-19 Vaccine FAQs

  • What did MDA do to ensure that the NMD community got priority access to COVID-19 vaccines?

    MDA engaged with the Centers for Disease Control and Prevention as well as state and local public health officials to ensure that decisionmakers were aware of the needs of the NMD community to be able to have the earliest possible access to FDA approved COVID vaccine(s). In October, MDA contacted the CDC asking that individuals with neuromuscular diseases should be included in the early phases of vaccination. In December, MDA joined 19 other neuromuscular disease advocacy groups in contacting every state and jurisdiction asking for phase one access to the vaccine for the neuromuscular community. In February, MDA joined partnering organizations to urge CDC to provide further guidance to jurisdictions on including individuals with rare diseases during the “high-risk condition” phase.

    For more on MDA’s efforts to advocate for the neuromuscular disease community on COVID-19, please visit: https://cqrcengage.com/mda/Covid19

  • With multiple COVID vaccines authorized by the FDA, which one should I get?

    Access to FDA-authorized vaccines will depend on many factors such as administration location (e.g. hospital setting vs. commercial pharmacy vs. primary care provider’s office vs. mass-vaccination site), local availability, and other variables. You may or may not have the choice between the three vaccine options. It’s important that you discuss these questions with your healthcare provider before you get vaccinated. However, all three authorized vaccines have been evaluated and deemed safe and effective by the FDA for all individuals 18 and older, including those with neuromuscular diseases.

  • Now that all adults with high-risk medical conditions are eligible, how should I obtain the vaccine?

    With all states and jurisdictions opening up vaccine eligibility to adults with high-risk conditions, MDA has put together key information, such as phone numbers and websites, on obtaining the COVID-19 vaccine in your area. Before making an appointment, we recommend following these four tips:

    1. Currently the vaccine is only available for adults.
    2. Talk to your healthcare provider with any questions about the vaccine.
    3. Call your healthcare provider or state/jurisdiction’s public health department to confirm that you are eligible to receive the vaccine.
    4. Notify MDA at ResourceCenter@mdausa.org if you attempted to get the vaccine but have been denied access.

    Remember, just because your jurisdiction has authorized individuals ages 16-64 with high-risk conditions to receive the vaccine does not mean you can immediately and easily access it. Limited appointments, supply challenges, other eligible individuals receiving priority, and various other reasons may still prevent access for some time.

    For any questions regarding the COVID-19 vaccine for the neuromuscular community, please contact MDA’s Resource Center at ResourceCenter@mdausa.org or 800-572-1717.

  • I’ve only been doing telehealth visits, is it safe to go out to clinics/pharmacies to get the COVID-19 vaccine?

    While all MDA Care Center sites strive to provide care in the safest manner possible, it’s understandable that NMD patients may not yet feel ready to receive care in the clinic setting. MDA encourages you to discuss this with your healthcare provider before making a vaccination appointment at any location.

  • What are the side effects? Will they affect my neuromuscular condition?

    The known sides effects of currently-authorized COVID-19 vaccines are similar to those of the annual flu vaccine. These include muscle soreness at the injection site, fever, tiredness, body aches, and headache. We do not anticipate COVID-19 vaccines will have a different or more serious set of side effects for NMD patients, but this has not been proven in clinical trials. You should talk to your doctor about the possibility of more serious side effects of a COVID-19 vaccine for you.

  • What if I want my whole family to be vaccinated, including siblings, parents, and other family caregivers? Will they be able to get it when I do?

    With every jurisdiction already, or soon, vaccinating all adults ages 16 and older, everyone in the family aside from children should (or will soon) be eligible to be vaccinated in your jurisdiction. While other access challenges may still remain, eligibility is broad enough almost everywhere that any adult who wants a vaccine should be eligible.

  • Will the COVID-19 vaccine be covered by my health insurance? What if I don’t have health insurance?

    All individuals regardless of insurance coverage should receive a COVID-19 vaccine free-of-charge. The CARES Act, enacted by Congress last Spring, mandated all Medicare beneficiaries and individuals with private insurance obtained through their employer or ACA marketplaces receive the COVID-19 vaccine entirely free of charge. The Families First Coronavirus Response Act, also passed by Congress in the Spring, similarly required state Medicaid plans to cover the vaccine free of charge. For those who are uninsured, any provider who is participating in the COVID-19 vaccination program must provide all individuals regardless of insurance status with a free vaccine. Similar free coverage requirements are in place for the VA, Department of Defense, and Federal employees. For more information, please visit: https://www.kff.org/coronavirus-covid-19/issue-brief/vaccine-coverage-pricing-and-reimbursement-in-the-u-s/

    It is possible that you will be charged for the cost of administration of the vaccine. This varies on the location of vaccine administration and your insurance. We encourage you to call ahead to ensure you know if any administration charges will apply.

  • Is a prescription needed to get the COVID-19 vaccine?

    No, a prescription will not be necessary to obtain a COVID-19 vaccine, though the process of obtaining a COVID-19 vaccine varies by state and local jurisdictions. It is the general intention of Federal and state authorities to make a COVID-19 vaccine similarly accessible as other vaccines, such as the flu shot, that generally do not require a prescription. Should this information change or when we have updates we will revise accordingly.

  • What impacts will the vaccine have on my genetic therapies or other medication?

    Whether the vaccine will have an adverse impact on any course of treatment that you or your loved one may be taking is something that you will want to consult with your clinician about directly. Upon the FDA authorization of the Pfizer/BioNTech,Moderna, and Johnson & Johnson vaccines, the FDA did not name any contraindications pertaining to genetic therapies or other medications particularly important to the neuromuscular community. Should there be any contraindications that accompany future Agency decisions, we will update our information accordingly. However, given the many different neuromuscular disorders and courses of treatment, this question can best be addressed by your clinician. For more information on the FDA authorizations, please visit: https://www.fda.gov/emergency-preparedness-and-response/coronavirus-disease-2019-covid-19/covid-19-vaccines.

  • Is the vaccine safe for the pediatric population?

    While some individuals ages five to eighteen have participated in vaccine clinical trials, the biopharmaceutical manufacturers and FDA have only authorized of the Pfizer/BioNTech vaccine for individuals sixteen and older, and the Moderna and Johnson and Johnson vaccines for individuals eighteen and older.

    However, clinical trials of the vaccine focused on pediatric populations are ongoing so we should have more information about this soon and will provide updates as more is known. Pfizer/BioNTech recently filed for an emergency use authorization from the FDA for children ages 12 to 15., Moderna similarly recently announced a fully-enrolled clinical trial for children ages 12-18, and Johnson & Johnson recently open enrollment for children ages 12-17 for their vaccine as well. Pfizer/BioNTech and Moderna are enrolling of children ages 6-11 for the vaccine trials as well. We will update this page with additional information when public.

  • When can my child get the vaccine?

    The timeline for the clinical testing of COVID-19 vaccines in pediatrics is fluid and depends on the signals of safety and effectiveness in those therapies. So while it is impossible to target a specific date for FDA authorization and then subsequent access to the COVID-19 vaccines in children, given the fact that confirmatory trials are ongoing for all-three FDA-authorized vaccines in children ages 12-17, we’re hopeful that access can happen this summer, if not sooner. We’re hopeful access for children 5 to 11, then children 5 years and younger, will happen shortly thereafter.

    MDA will update these FAQs and the community as soon as access to a COVID-19 vaccine is opened for children in the neuromuscular community.

  • Additional Information on COVID-19 vaccines

    • Resources provided by American Society of Gene and Cell Therapy (ASGCT) on mRNA vaccines for COVID-19, which includes a short video, FAQ, and an infographic.
    • Visit CDC’s Vaccine Information page to learn more about vaccine safety for you and your family.
    • CDC is making coronavirus disease 2019 (COVID-19) vaccination recommendations for the United States based on input from the Advisory Committee on Immunization Practices (ACIP). ACIP is a federal advisory committee made up of medical and public health experts who develop recommendations on the use of vaccines in the U.S. public. ACIP holds regular meetings, which are open to the public and provide opportunity for public comment.

COVID-19 Recommendations for the Neuromuscular Community

Current guidelines for COVID-19 exposure have focused on specific communities related to risk to travelers, the elderly and those with conditions that affect respiratory health. In order to inform the neuromuscular community of specific information which is relevant to COVID-19, MDA has prepared the following information which expands on the CDC recommendations for the general population in order to keep the neuromuscular community up to date on best practices for managing the global spread of SARS-CoV-2.

A few general points will help patients and families to have a better understanding of the current situation:

  • About COVID-19

    The new virus is called SARS-CoV-2, which is part of the family of betacoronaviruses that are common in people and various animals, including camels, cattle, cats, and bats. The original spread from live animal markets in China has now continued with person to person transmission leading to global spread which is evolving rapidly. The disease caused by SARS-CoV-2 is now known as COVID-19.

    The virus is spread from 1) person-to-person exposure (principal means of transmission) and 2) surfaces exposed to the virus. Exposure is by respiratory droplets produced when an infected person coughs or sneezes leading to transmission to others in close proximity. A challenge is that some transmission can occur before an infected individual becomes ill making it hard to isolate that individual. The highest risk of spreading is from those that have symptoms of fever and respiratory illness. Late in the illness there is the potential for gastrointestinal infection and exposure from stool. Spreading from infected surfaces can be managed by careful hand washing (see below).

  • Symptoms

    Symptoms may appear 2-14 days after exposure. People with the following symptoms or combination of symptoms might have contracted COVID-19:

    • Coughing
    • Shortness of breath or difficulty breathing

    Or at least two of the following symptoms:

    • Fever, Chills, Repeated shaking with chills, Muscle pain, Headaches, Sore Throat, and New Loss of Taste/Smell
  • What to do if you are sick?

    For neuromuscular disease (NMD) patients, it is important that you seek prompt medical attention if you or anyone in your household is identified with symptoms consistent with COVID-19 or for documented exposure to an individual who has tested positive. Before seeking care, you should contact your healthcare provider and tell them that you have symptoms consistent with COVID-19 or have been exposed to someone who has or is being evaluated for COVID-19. It is important to notify your healthcare provider of your symptoms and potential exposure prior to entering a healthcare provider’s office to ensure proper precautions can be taken to help keep other people in the office or waiting room from getting infected or exposed. Contact your healthcare provider or health department to see if you should be tested. Your healthcare provider will provide guidance for having your symptoms evaluated and monitored.

    If you have a medical emergency and need to call 911, notify the dispatch personnel that you or a member of your household has, or is being evaluated for SARS-CoV-2. You should immediately get emergency medical care if you are having an emergency warning sign (including trouble breathing. It is important that you call ahead to the facility and notify them if you or a member of your household has or is being evaluated for SARS-CoV-2.

    The CDC has developed guidelines to slow down the spread of COVID-19 if you are sick. The World Muscle Society also has some guidelines for the NMD community surrounding COVID-19.

  • Prevention and Management

    There is currently no preventative vaccine or specific treatment for COVID-19. The best way to prevent illness is to avoid being exposed to the virus. However, as a reminder, CDC always recommends everyday preventive actions to help prevent the spread of respiratory diseases, including:

    • Avoid close contact with people who are sick.
    • Avoid touching your eyes, nose, and mouth.
    • Stay home when you are sick and separate yourself from others until it is safe.
    • Ask your healthcare provider for advice and testing.
    • Cover your cough or sneeze with a tissue, then throw the tissue in the trash, and immediately wash or sanitize your hands
    • Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe
    • Follow CDC’s recommendations for using a cloth face covering.
      • Choose masks that have two or more layers
      • Make sure mask covers nose and mouth
      • Wash mask regularly
    • CDC does recommend wearing a cloth face covering to reduce the spread of infection in case you are infected and not showing symptoms.
    • Cloth face covering should be used to help prevent the spread of the disease to others. The use of medical grade face masks are reserved for healthcare workers and some first responders.
    • Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing, or sneezing.
    • If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol. For information about hand washing, see CDC’s Handwashing website.
    • Clean hands if you have been in contact with items and surfaces in a public setting that may be touched frequently by other people.
    • For information specific to healthcare, see CDC’s Hand Hygiene in Healthcare Settings.
    • Practice Social Distancing to reduce the spread of COVID-19. CDC recommends to stay at least 6 feet apart.

    These are everyday habits that can help prevent the spread of several viruses. CDC does have specific guidance for travelers.

  • Caregivers and Household Members

    It is important that caregivers and household members take all necessary precautions to avoid the risk of contracting COVID-19 and spreading the illness to someone with a neuromuscular disease. We recommend that neuromuscular patients and caregivers work together to identify a backup caregiver who will be able to provide care for the neuromuscular patient in the event that the caregiver gets sick. In addition to the preventative measures listed above, caregivers should also wash their hands or use hand sanitizer before and after providing care (such as feeding, bathing, and dressing), wear a cloth

    face covering, clean and disinfect frequently touched objects and surfaces to help decrease the risk of exposure for the patient. Use EPA approved disinfectants that are effective against COVID-19.

    The CDC website lists additional precautions for People at Risk for Serious Illness from COVID-19 and Guidelines for Caregivers at Home. The World Muscle Society on COVID-19 has additional guidelines for the the NMD community.

  • Guidelines for Healthcare Professionals

  • Reopening Guidelines

  • COVID-19 Clinical Trial

    The Department of Health & Human Services (HHS), in coordination with NIH and Operation Warp Speed, has launched a central web portal called Combat COVID (https://combatcovid.hhs.gov/).

    Visit combatCOVID.hhs.gov to learn more and please consider linking to this important public resource from your organization website.

  • Additional Resources

COVID-19 and Myasthenia Gravis/Lambert-Eaton Myasthenic Syndrome

An international working group of MG experts has just released recommendations regarding treatment practices for MG and Lambert-Eaton Myasthenic Syndrome (LEMS) during this pandemic of Covid-19. Read the article here, or Download the PDF.

General Information

How to stay prepared from Ready.gov
Resources from the World Health Organization

Resources from the CDC

References:

  1. Centers for Disease Control and Prevention