Living with a long term condition like PNH can present some challenges such as travelling overseas, however we hope that we can provide you with some information to make this as smooth as possible.
When travelling abroad, travel insurance is vital and should be considered an essential part of your trip. Travel insurance can be purchased directly through a travel insurance provider or through an insurance broker, either online or over the phone or in a travel agency or shop. If you do not advise your travel insurance company of a pre-existing medical condition, treatment for this condition will not be covered by the policy.
It is important to check the details of your policy for what is and is not included. It is advisable to check the small print of your policy and ensure that you are covered for medical and repatriation costs so that if the worst does happen your medical fees will be paid and you will be able to return home. Medical costs abroad can be very expensive with a broken leg costing from £10,000 to £25,000 to treat. The cost of getting someone home can be up to £25,000.
Examples of travel insurance companies which patients have reported good experiences with and who know about PNH are set out below:
A valid European Health Insurance Card gives you the right to access state-provided healthcare during a temporary stay in another European Economic Area country or Switzerland. The EHIC covers treatment that is medically necessary until your planned return home. Treatment should be provided on the same basis as it would to a resident of that country, either at a reduced cost or, in many cases, for free. For example, in some countries, patients are expected to directly contribute a percentage towards the cost of their state-provided treatment. This is known as a patient co-payment. If you receive treatment under this type of healthcare system, you are expected to pay the same co-payment charge as a patient from that country. The EHIC also covers the treatment of pre-existing medical conditions and routine maternity care, provided the reason for your visit is not specifically to give birth or seek treatment. For more information about what is covered in each country, see the country-by-country guide.
The EHIC is not an alternative to travel insurance. It will not cover any private medical healthcare or costs, such as mountain rescue in ski resorts, being flown back to the UK, or lost or stolen property. It is also not valid on cruises. It is therefore important to have both an EHIC and a valid private travel insurance policy in place before you travel. Some insurers now insist you hold an EHIC, and many will waive the excess if you have one.
Many people living with PNH are treated with eculizumab (Soliris). As treatment with eculizumab is required to be continuous with no infusion usually being longer than between 14 and 16 days apart. Therefore, travel either needs to be planned around infusion dates or alternative arrangements need to be made to receive infusions in the country to which you are travelling (if this is possible). Eculizumab is not available everywhere in the world and therefore you should speak to the PNH National Service about this, well in advance of planning your trip as careful planning is required to arrange this. In the past, PNH patients have been able to receive eculizumab in countries including Australia, South Korea and Ghana.
Please speak to your Clinical Nurse Specialist at the PNH National Service for you are being treated with eculizumab and plan to travel for longer than 2 weeks.