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3 Ways Rare Disease Patients Can Prepare for the Coronavirus

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Depending on where you live, how much you follow the news and your general personality type, you may or may not be concerned about the coronavirus (COVID-19), the new viral strain in the coronavirus family that the World Health Organization just declared a pandemic.

Panicking doesn’t help anyone, but being prepared may help and certainly won’t hurt. There are a lot of general recommendations out there, but here are several specific ways you can prepare as a rare disease patient.

1. Get extra prescriptions and over-the-counter meds to have on hand.

Because of the outbreak, it’s possible that we may see drug shortages soon, based on the amount of medication we import that gets produced in India with ingredients coming from China. As reported in The Wall Street Journal, China is the source of a significant percentage of basic drug ingredients. 

Most drug manufacturers keep a two to three-month supply on hand, so hopefully the Chinese factories will be back to business before it becomes a big issue. But, given that rare disease patients take quite a few medications and that they often need a specific drug or formulation, it makes sense to plan ahead.

Here are some ways to increase your access to medication:

  • Ask your doctor to refill prescriptions and/or write a prescription for 90 days.
  • Call and ask your insurance company to cover a 90 day supply (many are doing so now). This is often an option if you are getting them mail-ordered but may be approved for your regular pharmacy as well.
  • Don’t forget to stock up on over-the-counter (OTC) medications as well. It may save you having to make a trip out in public, plus it’s better to have a backup just in case.

2. Talk to your doctor now about coronavirus preparation.

As soon as you can, call or email your doctor to set up a time to talk about coronavirus preparation. It will be a lot easier to talk to your doctor now about potential issues and preparations than waiting until it is an emergency when you might not be able to get a hold of them.

Talk through whether there is anything in your medical history that would require changes in your care if you were to get COVID-19, which may include use or avoidance of specific drugs, other supportive methods necessary, things to watch out for, etc. Ask to have those added and highlighted in your medical record, along with a copy of these notes for you to keep with you.

Here are some helpful tips for talking to your doctor:

  • Email or MyChart is a good way to communicate with many doctors without having to go into the office and risk exposure to anything.
  • If you have or have had respiratory issues, ask for directions and a prescription for treatment in case you get sick.
  • Ask if it would be possible for you to have your doctor’s direct phone number so you can reach them in an emergency. You can reassure them that you will not abuse this privilege and will only use it if necessary.

3. Take the normally recommended precautions.

Lastly, it’s important to follow the prevention and treatment recommendations from the CDC. Check it out here. In addition, find out how to get your household ready for the coronavirus disease here.

It’s a good idea to become aware of your habits and normal behavior so you can start adopting and implementing the recommendations. Depending on your health risks, it may make sense to avoid going out in public or being in big crowds. This is a good thing to discuss with your doctor. Being prepared may take a bit of time and energy, but it won’t hurt and just might help if you need it.

Concerned about coronavirus? Stay safe using the tips from these articles:

GettyImages photo via UnitoneVector

A version of this post originally appeared on Healing Hugs Haven.

Originally published: March 11, 2020
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