PNH – Travel Protocol

Travelling with PNH? New travel protocol now available!

If you have PNH, it is important to plan ahead for any upcoming travel – be it for work, holidays or personal reasons. Apart from the usual things to think about when travelling, having PNH means you also need to consider:

  • Your current health;
  • Any health needs you may have while travelling; and
  • Steps you can take to avoid becoming ill while you’re away.

Even if you’ve successfully travelled in the past, things can change over time, and you must talk to your doctor as soon as you start thinking about taking a trip.

To help you plan for any upcoming travel, the Canadian Association of PNH Patients has developed a travel protocol for PNH patients who are currently being treated with eculizumab. If you will need to be infused while travelling, this protocol should be followed to help ensure you have access to treatment during your trip.

  • The patient is required to obtain their doctor’s approval for them to travel.
  • The patient will notify the OneSource team as soon as they are aware of their official travel dates and location(s) so that infusion planning can begin.
  • The patient, with the assistance of OneSource (if required), must source a local clinic/hospital where the medical team is already trained in the administration of eculizumab and is willing to infuse the patient.
  • All infusion locations must be secured for use by the patient before travel can take place.
  • While travelling, the patient is fully responsible for the costs charged by the local clinic/hospital to infuse eculizumab.
  • The patient must have their doctor sign a letter, declaring that the medication they are travelling with (eculizumab) is medically necessary, to show to airline, customs and security personnel, as required. A form letter will be provided by OneSource for this purpose.
  • The patient will be instructed by OneSource on how to transport the medication and the safety precautions that must be followed to avoid spoilage.
  • The patient will work with OneSource to determine how the medication (eculizumab) to be infused during their trip will be paid for.
  • Upon arrival at their destination, the patient should contact the clinic/hospital to make arrangements to bring the medication to the clinic for safe keeping and to avoid spoilage.
  • In the event of loss, spoilage or damage of the medication (eculizumab), the patient will need to return to Canada for their next scheduled infusion.
  • The cost of replacing lost, spoiled or damaged medication and related travel costs will be the responsibility of the patient.

Download the travel protocol here.