Disaster and Emergency Preparedness Plan

Having a disaster and emergency preparedness plan during a natural disaster or emergency is especially critical when someone has a chronic illness. The Cystic Fibrosis Foundation made the following guide to help you or someone you know with cystic fibrosis prepare for a disaster or emergency.

On an Annual Basis: Be Proactive

It is important to have an emergency preparedness plan, because an emergency or natural disaster can occur at any time. The plan should be reviewed on an annual basis to ensure all supplies and information are up to date.

  • Review your home insurance policy. Flooding caused by storms is the most common and costly natural disaster. It can happen anywhere -- one-fifth of home insurance claims are filed for flood damage that occurred outside high-risk flood zones. Most home insurance policies do not include flood coverage. A separate flood insurance plan may be purchased, but there is usually a 30-day waiting period for coverage to begin. It is important to review your policy, assess your needs, and plan ahead in case you need to make changes to your policy.
  • Map out an evacuation or escape plan. Make a plan and meet routinely as a family to review an evacuation or escape route from your home, including a designated place to meet in the event you get separated. It might be helpful to document the plan on paper and have it readily available or displayed in your home for all family members to reference if needed.
  • Consider purchasing a backup generator. During emergencies or natural disasters, people may experience power outages that can last for days or weeks. Having a backup generator can help extend access to power through the emergency period. The best time to buy a generator is well before an emergency or natural disaster occurs since they can be difficult to find on short notice. Remember to have an extra tank of gasoline readily available, as most generators run on gasoline. Please take caution when using a generator. Find out more about backup generators from energy.gov.

When you are considering using a generator, it is important to discuss the power source with your physician or CF care team, as many generators rely on gas and may interfere with a person's use of oxygen.

Before the Natural Disaster: Be Prepared

When a natural disaster is anticipated in your area, it is vital to plan ahead, prepare, and collect items you might need in case you need to evacuate your home.

  • Make a list. Make a complete list of medical essentials and insurance information, including prescription medications, medical supplies, and equipment (such as your nebulizer and vest). Include special storage requirements needed for medications, such as refrigeration. Be prepared to have coolers with ice packs available for transportation of medication needing refrigeration or in case you lose electricity. This list will also help you when filing a claim with your insurance company for replacement of lost or damaged medications, supplies, and equipment.
  • Gather medications. It is important to have enough medications and supplies to last you through the disaster. If possible, have extra medications on hand. Access to pharmacies or durable medical equipment companies during a disaster may be limited. Make sure your pharmacy has up-to-date, correct insurance ID information and prescription copay cards on file.
  • Gather important documents. Keep extra certified copies of birth certificates, health insurance cards, and government-issued IDs in a secure, watertight location. These documents may be needed to apply for services after the disaster.
  • Assemble emergency kits. Have two emergency kits prepared -- one for your home and one for your car. These kits normally include first-aid items, such as bandages and wound gauze pads, antiseptic swabs, and ointment. It is also important to include survival items, such as enough drinking water and nonperishable foods to last at least three days per person, a flashlight, a battery-operated or hand-cranked radio, a fully charged portable cell phone battery charger, and a blanket. It will be important to check the status of the charger monthly to ensure it has not lost its charge due to infrequent use. Finally, consider including other items important to cystic fibrosis care and infection prevention, such as face masks and hand sanitizers. Visit ready.gov for more information.
  • Get gas and cash. Prior to an anticipated natural disaster, fill your car's gas tank with gasoline and have cash on hand, as you may need to travel long distances in the event of an evacuation. Cash is essential for food and gasoline when a bank or ATM are not readily available on your evacuation route. If possible, check road conditions before evacuating.
  • Charge your phone. Charge your phone and have a back-up phone charger or battery, when possible. When a natural disaster occurs, your cell phone may be the only way to contact emergency organizations and rescue assistance. Prepare a list of emergency contact phone numbers and keep it with you. Include your family members, CF care center, car insurance agent, and home insurance agent. This list will be invaluable if you lose your cell phone or need to borrow another person's phone to make calls. Make sure to include the CF Foundation Compass phone number, as case managers will be available to assist you as needed.
  • Familiarize yourself with nearby shelters and other places with access to electricity. Ahead of an anticipated natural disaster, make a list of the nearby shelters and their addresses and phone numbers. Mark these shelters on a paper map in the event of electricity loss. Much of this information is available through local news outlets and the American Red Cross.

    Some pharmacies and grocery stores allow individuals to access electricity at their facilities. Compass can help you identify nearby locations that allow you to use their electricity for treatments or storing medications.
  • Don't forget about your pets. If you haven't already done so, take a selfie with your pet. Should you and your pet become separated during the emergency or natural disaster and your pet is found by an animal rescue group, you will likely need to show proof of ownership before the group releases the pet back into your care. Most shelters will allow pets to accompany their families during a disaster; however, you must have documentation to show that all vaccinations are current and up to date. Include the list of vaccinations with your important documents and remember to include enough food and water for your pet with your supplies.

During the Natural Disaster: Be Alert

Having a plan before the emergency or natural disaster can help ease the stress incurred by potential evacuations.

  • Refill your prescriptions. If you run out of your medication during the emergency or natural disaster, contact your pharmacy and work with your insurance company to find out if you can obtain a medication override (usually granted for extended travel). Some states have laws that providers must waive time restrictions of prescription refills during certain natural events or emergencies.
  • Look for shelters. Use your identified shelters to find a safe, temporary living space in the event of an evacuation. Some shelters make special accommodations by offering isolated spaces for people with medical conditions like CF. City officials may be able to provide additional information about these accommodations. Some states also have a way to register someone with special health needs. Being on this list may help you access medical help more quickly. Compass can help you locate nearby shelters by calling and inquiring about space, accommodations, and access to electricity and water.
  • Call your care center. Contact your CF care center coordinator to inform them that you will be evacuating and the approximate time frame you intend to be gone. Ask how you should contact the care center during business hours and after hours during and immediately after the emergency or natural disaster. If you have difficulty contacting your CF care center, call Compass for assistance.
  • Evaluate road conditions. Before you evacuate, evaluate road conditions that may have been impacted by the natural disaster. Identify alternative evacuation routes outlined by the city or region.

After the Natural Disaster: Begin Recovery

  • Recover lost or damaged medications, medical equipment, and supplies. Start with your pharmacy first to obtain an emergency refill. If your prescriber cannot be reached, some states allow pharmacists to provide emergency refills without a prescription. Replacing medical supplies or devices will still require a prescription. Make sure to get the correct fax number for the pharmacy to send the prescription.
The mother of a child with CF contacted Compass for assistance with replacing Pulmozyme®, Tobi®, and an airway clearance device after the medications and the device were destroyed by Hurricane Florence. A case manager was able to assist with replacing medications and getting a new vest at no cost to the family. 
  • Properly ship replacement medications. If your medications are being shipped and the U.S. Postal Service is unavailable at your residence, arrange an alternate physical location where the shipment can be delivered or picked up. Often local pharmacies, hospitals, medical clinics, shelters, or hotels will accept the delivery if you discuss those arrangements prior to delivery. When the prescription is verified, your pharmacy will contact you to arrange shipment. Remember to ask for shipping and tracking confirmation numbers. In most cases, the package can be sent overnight. If you have not heard back from your pharmacy within 3-4 hours, place a follow-up call to obtain shipment tracking information.
  • Contact your CF care center when the prescription is needed. Provide your full name, date of birth, name of medications, fax number to send the prescription, and shipping address. Call the pharmacy in 1-2 hours to confirm they received the fax, as the pharmacy may not see incoming faxes immediately.
  • Contact supportive organizations. Contact organizations that help with disaster recovery of your home, belongings, and medical supplies. Contact your homeowner's insurance agent first. Then, if you have unmet needs, apply to the Federal Emergency Management Agency (FEMA) -- a government agency designed to provide relief aid during times of emergency and assistance such as grants for temporary housing, rental assistance, and home repairs. Even if you have insurance, registering for FEMA is important. FEMA cannot duplicate insurance payments, but if your home is impacted by a natural disaster, FEMA recommends you apply for assistance. There are three ways to apply:
  • Apply for low-interest disaster loans. Low-interest disaster loans from the U.S. Small Business Administration (SBA) may be available to cover losses not fully compensated by insurance. To be eligible for SBA disaster loans, you must be in a government-declared disaster area. Those eligible for disaster assistance funds may also receive a low-interest disaster loan application from SBA. You do not have to accept the loan, but you must complete the application and return it to the SBA to remain eligible for other types of federal assistance. To apply for loans, you can:

If you have other needs, contact FEMA at 800‐621‐3362 for referrals for Other Needs Assistance, which can help with:

  • Medical and dental expenses
  • Repair, cleaning, or replacement of:
    • Clothing
    • Household items
    • Specialized tools or protective clothing and equipment required for your job
    • Necessary education materials (school supplies, school books, and computers)
  • Clean-up items such as a wet/dry vacuum, air purifier, or dehumidifier
  • Fuel for primary heat source (heating oil or gas)
  • Repairing or replacing vehicles damaged by the disaster or providing public transportation or other transportation costs
  • Funeral and burial costs
  • Moving and storage expenses
  • Other necessary expenses or serious needs
A person with CF contacted Compass for assistance with refilling a prescription during an emergency. The family had already evacuated without one medication that was out of stock at their local pharmacy. A case manager was able to facilitate sending a new prescription to the closest pharmacy to where they had evacuated.

You are not alone. If you would like additional assistance finding and accessing resources, please contact Compass at 844‐COMPASS (844-266‐7277) Monday through Friday, 9 a.m. until 7 p.m. ET. All calls related to natural disasters will be handled urgently. You can also email cdt@cff.org. You can also check our website to learn if Compass has extended its hours during national disasters or emergencies.

Los Administradores de Casos de la Fundación Fibrosis Quística de Compass -- quienes hablan Inglés y Español -- están disponibles para trabajar con los afectados, uno a uno. Por favor póngase en contacto con la Fundación Fibrosis Quística Compass al 844-COMPASS o (844-266-7277).

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