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Travel Insurance

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 who patients have reported good experiences with and who know about PNH are set out below:

Medical Insurance Anywhere
Tel: 01268 782745

Asda Insurance
Tel: 0845 300 5773

All Clear Travel Insurance
Tel: 0845 250 5200
Email: info@allcleartravel.co.uk

Get My .com Travel Insurance
Tel: 0845 026 2441
Web:- getmy.com

Marks & Spencer Travel Insurance
Tel: 0800 068 3918
Web:- marksandspencer.com/insurance/travel-insurance/overview/

AXA Insurance
Tel: 0844 874 0360
Web – axa.co.uk

European Health Insurance Card (EHIC)

This was formerly known as the E111 form. The EHIC is valid within the European Economic Area (EEA) which includes all the European Union (EU) countries together with Iceland, Liechtenstein and Norway. Switzerland also has an agreement in place with the EU to accept the EHIC. The card allows access to healthcare, free of charge or at a reduced cost. It enables someone to access the same care that residents of the country you are visiting receive. It is customary in many countries to charge for certain services or products such as medication or personal care which the EHIC does not cover.

In some countries, you may have to pay a patient contribution, also known as a co-payment. You may be able to get a refund for these payments when you are back in the UK if you could not do so in the country where you were treated.

However, you will no longer be able to claim refunds for these patient contributions (co-payments) in the UK for treatment received after 1 July 2014. See 
http://www.nhs.uk/NHSEngland/Healthcareabroad/EHIC/Pages/EHICchanges.aspx for more information.


The EHIC will cover any medical treatment that becomes necessary during your trip, for example because of either illness or an accident. (In an emergency you can dial the European emergency number 112 from any telephone or mobile phone).
The card gives access to reduced-cost or free medical treatment from state healthcare providers.
It includes treatment of a chronic or pre-existing medical condition that becomes necessary during your visit.
It includes routine maternity care (not only because of illness or accident), as long as you are not going abroad to give birth. However, where the birth happens unexpectedly, the card will cover the cost of all medical treatment for mother and baby that is linked to the birth.
The card covers the provision of oxygen and kidney dialysis. You will have to arrange and pre-book these treatments before you go on holiday. You can ask your GP or hospital for advice, but make sure you are not booked with a private healthcare provider as these are not covered by the EHIC.

The card also covers routine medical care for people with pre-existing conditions that need monitoring.

Repatriation back home if you become unwell or have an accident is not covered by the EHIC. Many commercial airline operators will refuse to let sick or injured travellers on board. It is therefore important that you also have travel insurance as well.

EHIC’s are only valid for a certain period of time and can be renewed online.


When being treated with Eculizumab

As treatment with eculizumab is required to be continuous with no infusion usually being longer than between 14 and 16 days apart, travel either needs to be planned around infusion dates or alternatively arrangements need to be made to receive infusions in the country to which you are travelling. Eculizumab is not available everywhere in the world and therefore careful planning has to be undertaken between Healthcare at Home and your doctors to arrange this. In the past, PNH patients have been able to receive eculizumab in countries including Australia,  South Korea and Ghana. In order to arrange to receive eculizumab overseas you need to do the following: 

Give your doctors notice of travel plans as early as possible. Your fitness to travel needs to be assessed as well as practical arrangements made.
Your PNH National Service Centre will endeavour to organise a doctor abroad who can give you the infusion.  The medical team at your destination may not be familiar with the drug and will need all relevant information. Your UK medical team and/or Healthcare at Home can provide them with details of how to administer the infusions. At least four weeks notice of travel plans is necessary in order to ensure all arrangements can be made although as much notice as possible is preferable.
If eculizumab is available in the country to which you are travelling, you may not need to make arrangements to take it with you. If eculizumab is not available, you will need to decide how you wish to transport your eculizumab to your travel destination.  It is packaged in small glass bottles which can be transported for up to 96 hours in temperature controlled cool boxes which keep the drug safe to use. If Healthcare at Home is given enough notice it can package and deliver the correctly stored and packaged eculizumab to either you at home or an airport/ferry port or straight to the hospital abroad where you will have your infusions. Once your travel plans have been discussed with your UK medical team, a decision can be made as to which method is best. If you decide to travel with the drug you are advised to do the following:

Carry a letter explaining the contents of the cool box which you can give to security and/or customs officials at your departure and arrival points. Ask Healthcare at Home for this letter.

Contact the airline or other carrier you are travelling with to check their rules on carrying a cool box containing medication. Do not assume that the rules are the same for every carrier – they are often different and very specific and you may find you cannot make you trip if you do not follow them.

The size and weight of the cool box will depend on the number of infusions that need to be transported. For one infusion and to keep the medication safe for up to 24 hours, the box will measure 351 x 266 x 241mm and weigh 1.9kg. For up to two infusions and to keep the medication safe for up to 96 hours the box will measure 460 x 460 x 440mm and weigh 17kg. The box will be packaged by Healthcare at Home to ensure the eculizumab stays at the correct temperature during the journey. It is important that the packaging is not disturbed as this can affect how long the eculizumab stays at the correct temperature. The cool box is not intended to store the drug at your destination, merely for transportation. You must discuss your proposed plan for storage with your UK medical team prior to travel. Failure to store the medication properly may result in it not being suitable for infusion. Replacement of wasted vials will not be funded by the NHS and patients will be charged for these.

The NHS does not fund the cost of transporting eculizumab and therefore payment must be made to Healthcare at Home for all packaging and delivery costs before you leave. Healthcare at Home will be able to tell you the cost once they know the details of your travel plans and the amount of medication you need.

It is advisable to have your infusion cards completed and signed by the doctor who gives you eculizumab while you are abroad. If you have any blood tests while you are away, please ask for a copy of the results to give to your UK medical team when your return.

You should carry your meningitis alert card at all times when you are travelling outside the UK. If you become unwell while you are abroad you should seek urgent medical advice from the nearest hospital or the hospital where you are having your eculizumab infusions. If you are admitted to a hospital you should ask a friend or relative to contact your UK medical team to ensure you are given the correct treatment as quickly as possible.

The majority of the information concerning "When being treated with Eculizumab" is courtesy of Kings College Hospital NHS Foundation Trust.



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