PNH National Services

Travelling and Insurance

Travelling abroad with PNH

It is advisable to discuss potential travel plans with your PNH Centre prior to making any arrangements. It is also advised to speak to the PNH Centre about any immunisations that may be needed to make sure that it is advisable for them to be given in your case.

Patients receiving Ravulizumab

It is much easier for patients who are having treatment with Ravulizumab to only be abroad in between infusions, which are every 8 weeks. In exceptional circumstances, if this is not possible, please contact the PNH centre to discuss options of treatment dates.

Patients receiving Eculizumab

It is much easier for patients who are having treatment with Eculizumab to only be abroad in between infusions.

The National PNH Service is able to cover the cost of the Eculizumab whilst you are abroad, but not for any costs of administration. However, sometimes these can be recovered from the NHS through an alternative system, but this usually requires at least 2 months to arrange.

Prior to treatment in Europe, it is advisable to get an S2 health form, which will cover the potential cost of having an infusion.

If NHS Funding cannot be established before you travel, then any charges for Eculizumab administration would have to be met by the patient. Such charges can vary hugely depending on the hospital and the country concerned.

Holiday less than 2 weeks

If your holiday is of 2 weeks or less we can usually move the dates of your infusions so that you have one immediately before you travel and the next one on your return. It can take two or three doses to move the dates, so advanced warning is desirable (see below).

For most patients, it is safe to extend the interval between doses to 16 days, but this should only be done after consultation with the PNH Centre.

Holiday more than 2 weeks

If your trip abroad is going to last more than 2 weeks, then it may be possible to arrange for you to receive your Eculizumab infusion whilst you are away.

Whether it can be arranged for Eculizumab infusions to be given by local healthcare professionals in other countries depends on the country involved and on whether we can find a suitable facility for you to be treated in. This is possible for most countries in our experience.

It is best to plan travel as far ahead as possible and inform the PNH Centre as soon as you can.

This should be ideally at least 2 months before so that we can help with any arrangements if necessary.

Patients receiving Pegcetacoplan

Pegcetacoplan is a subcutaneous infusion administered by patients at home twice a week. You will need a cool bag to transport the treatment and equipment with you, as well as a letter if flying.

Please contact your PNH centre for advice regarding this, ideally 2 months in advance.