Having an Emergency Preparedness Plan

Having a plan in case of an emergency or natural disaster is important and a good idea for anyone, but especially those with chronic health conditions, including CF. If you depend on power sources for treatments or need to have access to certain supplies, it’s always smart to have a plan in place. This way, you can make sure all of your health needs are met in the instance of any kind of emergency, whether it be a natural disaster, emergency situation, or even simply bad or dangerous weather.

You might never need to use the plan, but on the off chance that you do, it’s better to have it and be safe, than to not have a plan and find yourself (or a loved one) at risk. Once you develop an emergency preparedness plan, it’s best to review it every year – or if any medical needs change, review it sooner and make any necessary adjustments.

General things you can do

When you develop your plan and then review it every year, there are some general things to keep in mind and consider, including:¹

• Look at your home insurance policy

  Not every policy includes flood coverage, even though flooding is the most common and costly natural disaster. Find out what is and isn’t covered, and how you can add precautions to your policy. This could end up saving you a considerable amount of money in the future.

• Develop an evacuation plan

  Go over, with your family, a route you’d use if you need to evacuate. Designate a meeting place, and you might want to even put it up so people can see it as a reminder.

• Think about acquiring a backup generator

  In case of an emergency or disaster, you might be without electricity for prolonged periods of time. This can cause serious issues if a patient needs nebulizing treatments or oxygen, or any other kind of therapy that uses electricity. Prior to getting a generator, you should talk with the healthcare team, as many generators run on gas, which can cause issues with an individual’s use of oxygen.

Preparing for a disaster

It may sound alarmist, but the best thing to do is to be prepared well in advance of a disaster. If disaster strikes, you’ll have everything in place; if it doesn’t, you’re prepared for the next one. Here are some things to do when preparing, especially if a disaster is imminent:¹

• First, make a list: make a list of everything you’ll need in an emergency for CF, including a complete list of medications (prescription and non-prescription) and insurance information, medical equipment (including whether you need a power source), and storage requirements like coolers and ice packs.
• If a disaster is imminent or looming, make sure you have enough medication on hand.
• Put all important documents in one safe place: this includes birth certificates and certified copies of certificates, health insurance cards, and government-issued IDs. Get a waterproof and fireproof storage solution for these documents, since these are often necessary once the emergency is over to apply for relief services.
• Put together emergency kits for your home and your car. Include basics like typical first-aid items, but also drinking water, nonperishable food, and things that might come in handy for individuals with CF like face masks, hand sanitizer, and any spare equipment they might need.
• Make sure you have enough gas in your car and enough cash. In a disaster or emergency, banks will be closed and you might not be able to access an ATM.
• Charge your phone and any other electronic device you might need, and make sure you have a back-up battery or cordless charger, if possible. Keep a list of emergency contacts with you, including insurance agents, CF specialists, family doctors, and medical personnel.
• Know where the local shelters are and write their numbers down.

During an emergency

During an emergency or natural disaster, you’ll be following the plan you’ve made, but here are some other things to keep in mind:¹

• Make sure you have enough medication

  If you are running low or run out of your prescriptions during the emergency, call your pharmacy and insurance company to see if you can get an override; many provide this if you have to travel to another state, or extend time between refills or get refills sooner because of an emergency.

• Find a shelter

  Use your plan to find a shelter that has space for you and your family. Some shelters also offer special areas for those with various conditions like CF, and some states even have registries for individuals with specific health needs, so that these individuals can get the necessary care in the event of an emergency. Call your local city officials for more information.

• Contact your doctor or health care team

  Let them know where you will be going and if you’re traveling, for how long. Ask them if they have emergency numbers set up during the emergency or where to go if you need them.

When the emergency is over

Once the immediate danger has subsided, you can start to get back to assessing the damage and repairing things, as well as ensuring you have all of the medications and supplies necessary for CF treatment and maintenance. Here are some things to consider doing:

• If any supplies or medication were lost or damaged, start the road to recovering them. Ask the pharmacy for an emergency refill, get an emergency prescription for supplies or devices, and call your insurance company. If you can’t have medication, devices, or supplies shipped to your regular address, find a physical location like a local pharmacy, shelter, hotel, or hospital that is willing to accept the delivery for you.
• Contact aid organizations. Don’t be shy or too proud to do so; they are here to help you.

For those impacted by disaster

If you’ve survived a natural disaster or emergency, there are resources that can help you:²

• CF Foundation Compass is an organization that can help those with CF and their families navigate any insurance, legal, financial, or other issue that arises, including an emergency. Contact 844-266-7277 (844-COMPASS), email them at compass@cff.org or cdt@cff.org, or fill out the online self-service form.
• Federal Emergency Management Agency (FEMA) can help with relief aid, housing, rental assistance, and also refer you to Other Needs Assistance, which can help with expenses related to CF or medical expenses. Call 800-621-3362 or apply online.

What does your cystic fibrosis emergency plan look like?

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