Revised
Originally published February 28, 2020. Revision 1 on March 4, 2020. Revision 2 on March 14, 2020. Revision 3 on March 19, 2020.
The March 19, 2020, revision adds information about the Families First Coronavirus Response Act (H.R. 6201) and the Epilepsy Foundation's work to help ensure access to health care, medications and other critical support during these challenging times.
The COVID-19 (novel coronavirus) situation has entered a new phase. This viral infection is affecting many countries throughout the world. While most people who may develop this viral illness will have only mild to moderate symptoms, some people may need to see a health care provider or be hospitalized.
The focus by the Centers for Disease Control and Prevention (CDC), and all of us, is on slowing down the spread of COVID-19 and ensuring people can receive the care they need. The word “community mitigation” is used to describe the process of slowing down the spread of the virus. Each community is or will be offering guidance for their area, and the CDC has updated recommendations about what people and community leaders should know and do.
Here are the latest answers to questions you may have about COVID-19 and epilepsy. We will update this page as new data reveals more information.
Are people with epilepsy at higher risk of developing COVID-19 (coronavirus)?
Epilepsy is a “family” of many different disorders that lead to seizures. Some people will have easily controlled seizures, have no other health problems, and become seizure-free on medications. Or they may have epilepsy with occasional seizures but no other health problems. For these people, the available data suggests that just having epilepsy alone
- Does not increase the risk of getting COVID-19
AND
- Does not increase the severity of COVID-19
Some people with epilepsy regardless of seizure control have other health conditions that put them at higher risk from COVID-19.
- They may be taking medicines to control seizures that also affect their immune system (for example, ACTH, steroids, immunotherapies). Or they may have other neurological or developmental issues that affect their immunity. People in these situations are at greater risk of developing more severe symptoms with viral illnesses.
- People with epilepsy may have other medical problems that could place them at higher risk of developing more severe symptoms with COVID-19.
- For example, people who have problems swallowing or frequently inhale food or liquids into their lungs (aspiration) are at higher risk for pneumonia.
- People with diabetes or underlying heart or lung problems also appear to be at higher risk for severe COVID-19.
Regardless of your situation, it is important for anyone with epilepsy to talk to their treating health care provider about their individual risks and if any specific medical precautions are needed. Take precautions to avoid getting sick too.
Can COVID-19 increase seizures if a person gets the virus?
When a person with epilepsy gets sick with another illness, especially with a fever, they may notice a change or increase in their seizures.
- The illness is a physical and emotional stressor to the body that could make seizures more likely. The same happens if someone is sick with COVID-19.
- Other triggers may include
- Worry and anxiety about seizures and COVID-19 may affect people
Preliminary information from countries where outbreaks have occurred suggests that the risk of worsening seizures with COVID-19 appears to be low for most people with epilepsy.
What should be done if seizures change or increase?
If you or a loved one develop COVID-19 and notice changes in seizures, contact your epilepsy health care provider, as well as your primary care provider.
- Call your providers first. Don’t just go to their office without an appointment – this could put other people at risk for getting the virus.
- Don’t go to an emergency room on your own unless it is an emergency. Many times you can be treated at home.
- Treating the symptoms of the viral illness is especially important. Make sure you can eat, drink, sleep, and take medicines regularly.
- If needed, your provider may recommend an adjustment in seizure medicine or recommend a rescue medicine to use during periods of increased seizures. If you already have been prescribed a rescue medicine, talk to your pharmacist about an emergency supply.
- If you are worried about going to a hospital or health care appointment, ask your provider if they have phone or video visits. These are usually called telehealth visits.
- If this is a routine visit, ask your provider if it is safe to postpone or reschedule the appointment.
- However, just like any other time, if you or a loved one have an emergency, such as seizures lasting too long or more seizures than usual, seek emergency help.
How can I get more medicine if my health care provider prescribes it? Will it be covered by my insurance?
Some people have reported problems getting an extra or larger supply of their seizure medicine. The Centers for Medicare and Medicaid Services (CMS) has released information for people who have Medicare Part D prescription drug plans or Medicare Advantage plans.
- The plans now can be more flexible – for example remove prior authorization requirements, waive prescription refill limits, and relax home and mail delivery of prescription medicines.
- Providers are encouraged to expand access to telehealth services if possible.
These recommendations offer flexibility and options to health plans and do not require plans to make these changes.
Some private insurance companies and pharmacy benefit managers are adjusting coverage rules as well.
Learn about programs offered by some drug manufacturers that help people who cannot afford their medications.
Important
If you are having trouble getting prescription medicines dispensed or covered by your insurance, please contact the insurance company first. In some situations, your pharmacist may be able to help do this for you.
What if I have other questions about insurance coverage related to COVID-19 testing or treatment?
- CMS has recently released information for health care providers about changes affecting coverage for medical care in different settings.
- Talk to your health care provider or insurance plan if you are have questions.
- A social worker or case manager may also be very helpful.
Are there shortages in seizure medicines in the United States?
There are no reported shortages of seizure medicines in the U.S. that we know of now. The Food and Drug Administration (FDA) is monitoring this closely.
If COVID-19 is in my community, what should I do?
Please follow the CDC guidelines about precautions that are important for everyone.
- You may need to stay home for a period of time. Follow your local public health recommendations.
- Avoid crowds and being too close to other people. This is called social distancing.
- Update your seizure action plan for what to do if there is a change in seizures and who to call.
- Talk to your healthcare provider about an extra supply of prescription medicines. If you can’t get the seizure medicine from your local pharmacy, look into a mail-order pharmacy. They often allow people to get a 2 or 3 month supply of medicine at once if prescribed by your provider. Review CDC's prescription preparedness information.
- Keep supplies of any over-the-counter (OTC) medicines you normally take. Do NOT take any new OTC medicines without talking to your provider.
- Look into ways to have food and other things you need delivered to you.
- Stay in touch with family, friends or someone who can check on you if needed.
If I or my loved one is at risk for developing a serious form of COVID-19, should I take extra precautions?
- Follow the precautions described by CDC.
- Review the information above about what to do if seizures change.
- Talk to your health care team for specific recommendations.
- Look into options to stay at home if feasible.
- If another member of your direct family who lives with you becomes ill
- Can they stay with someone else? If not possible, each person should have their own room, use separate bathrooms, and wash their hands frequently.
- Visit the CDC recommendations.
- If you or a loved one with epilepsy attends a work or day program in your community, talk to the agency about alternatives. Do they offer small group activities or can they participate in some form of home activity?
- If you or your loved one live in a group setting (group home, assisted living, or other long-term care facility), talk to the administrator and medical staff of the facility. Find out what precautions are being taken. If you have concerns about these, talk to your own health care team to see if any adjustments are needed.
- If you have help come into your home, follow common sense and make sure people helping you are following good health practices. Talk to the agency responsible for the people coming into your home so you know what to expect and can share your concerns.
- Have a back-up plan for help in the home too.
How do I protect myself from getting sick?
It is flu season and respiratory illnesses are common. Follow these common-sense tips from CDC to protect yourself from getting sick.
- Make sure you’ve had a flu vaccine.
- Wash your hands regularly to prevent the spread of germs.
- Avoid close contact with people who are sick.
- Avoid touching your eyes, nose and mouth.
- Stay home if you are sick and call your health care provider first if you need an appointment.
- Cover your cough or sneeze with a tissue, then throw the tissue in the trash.
- Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.
Preparing for Any Emergency
Preparing for potential emergencies is part of life for all of us – whether that's for natural disasters, extreme weather conditions, or medical emergencies. This is no different. Here are a few tips to follow now and every day.
- Remember – Talk to your pharmacist first about creating an emergency supply of prescription medicines.
- If you will need a new prescription in a few weeks, get it early so you don’t run out.
- If you have been prescribed a rescue medicine (for example, lorazepam (Ativan), clonazepam (Klonopin), rectal diazepam (Diastat), nasal midazolam (Nayzilam), or nasal diazepam (Valtoco)) to take if you have a change in seizures, talk to your pharmacist about an emergency supply of this medicine too.
- If you are having trouble with your supply of medicine, contact your pharmacy or call 211 for help. If they are unable to help, let your doctor know as they may need to substitute another medication for a short period.
- Remember – Keep your seizure action or response plan up-to-date. Keep this in one place along with a list of your medications, important documents, and, if possible, a supply of medication in a watertight bag or container.
- Keep a phone and any electronic devices charged that you may need for medication reminders and contact with family and emergency response.
- Keep a pen and paper calendar with you in case there is an extended period without electricity, so you can write down medication reminders or track any seizures.
- Remember – Check in with family or friends on a regular basis.
- Talk about any questions or worries – added stress can affect seizures and your emotional well-being.
We are Here for You
The Epilepsy Foundation and our nationwide network of local organizations are here to help before and after an emergency. Information specialists working our 24/7 Helpline keep in touch with local Epilepsy Foundations and update our database as new resources are identified and created. Call 1-800-332-1000 (en Español 1-866-748-8008) for up-to-date information on services available near you.
Epilepsy Foundation Seeks Support for People with Epilepsy in COVID-19 Relief Packages
Congress is working on an economic stimulus package — the Families First Coronavirus Response Act (H.R. 6201) — given the COVID-19 pandemic. The Epilepsy Foundation has been advocating in coordination with the patient and disability communities for provisions to be included that help ensure access to health care and medications and other critical support like meaningful paid leave during these challenging times.
On March 14, the Foundation joined the Consortium for Citizens with Disabilities in a letter that was sent to Senate leadership outlining critical support needed for people with disabilities and the programs they rely on. On March 16, 29 national patient and consumer organizations, including the Foundation, released a statement urging the U.S. Senate to immediately pass H.R. 6201 and sent an accompanying letter to Senate leadership.
Get the details on H.R 6201 and how we are working for you.
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