The United States is getting hit with brutal severe winter weather this year and the country held their breath when UPS and FedEx stated that they could not fulfill their Christmas shipping deadlines. These delays affect the specialty pharmacies shipping directly to pulmonary arterial hypertension patients as well as suppliers shipping to your local pharmacies. So what can a pulmonary hypertension patient do if their Letairis, Remodulin, or Opsumit shipment is delayed? Follow the simple steps below to get through this shipping crisis and avoid anxiety over future shipments.
Order Your PH Medications Ahead Of Time
Most insurance companies will have a set number of days they demand between refills. Know when your insurance and pharmacy will allow you to refill. Mark this timeline on your calendar and refill the first day you are allowed. Always know the supply of PAH medication that you have on hand and avoid being surprised when there isn’t another package or bottle of medication to open.
Many specialty pharmacies will contact patients to process refills. Do not wait for them to contact you. This may be a luxury if the timing works out and they call you just when you were thinking about calling them but do not hang the success of your PH treatment on their outbound phone call. Pick up the phone and call. This also applies to local pharmacies that have auto refill services. It is better to plan on everyone else being delayed or unorganized and then be pleasantly surprised when they are on the ball than to go without your PAH treatment.
Make An Emergency Back Up Kit
Always have an emergency back up kit of medication and supplies that you do not count when taking inventory. Most specialty pharmacies will help set this kit up for you when they show you how to administer the complex infused or inhaled therapies. If you are not on a complex therapy with a specialty pharmacy work with your physicians office on what you would need for an emergency back up medication kit.
For most patients an extra 1-2 days of medications should suffice but if you live in a remote area you may need a larger supply.
Always remember to switch out the medications in the emergency back up kit so that they don’t expire.
Notify Your Physicians Office Right Away
Notify your nurse coordinator right away if you are aware of a delay in shipment. Many pulmonary hypertension centers have samples or ways of getting you the medications you need in a timely manner. The earlier they know about the problem the better the chances of them being able to solve it prior to it affecting your PAH. The physician’s office can also advise you on how many, if any, doses they are comfortable with you missing. Always error on the side of contacting your physician, call even if you think you will most likely squeak by.
Know The Closest Facility With PH Medications In Stock
Work with your pulmonary hypertension specialist to find out what facilities have PH medications in stock. Pulmonary arterial hypertension is a rare disease and the medications are expensive so most hospitals do not routinely stock them. If all other options fail and you are unable to obtain your therapy, particularly continuously infused therapies, you may need to present to the closest facility with the medication in stock. Often they will be able to provide a fill of your cartridge or cassette and send you on your way. This is very rarely necessary for patients taking oral therapies as samples or alternative medications in the same class can usually be found, but it is imperative to never discontinue a continuously infused therapy abruptly as this may cause rebound pulmonary arterial hypertension and be life threatening. Always contact your physician to alert them of the situation and remember to bring your dosing sheet and other supplies such as cassettes or syringes for your particular pump.