Travelling overseas with haemophilia

Claire is a member of the Australian bleeding disorders community

My name is Claire and I am the mother of two young boys who have severe haemophilia A.

As a couple, my husband Ben and I loved travelling. After having one boy, and then another boy, travelling was always going to be on the cards. And we would not let haemophilia stop us.

However, traveling overseas with the boys has had its challenges.

PLANNING AND PACKING

We have to be very organised from the moment we purchase our plane tickets.

We need to let our Haemophilia Treatment Centre know about our future travels and plans; they organise letters and extra factor, which we pick up from the hospital.

When we initially travelled, we had an esky that would keep our factor cold up to 12 to 14 hours. So, we had to have a stopover if we were going to travel to Europe for example. We would therefore stop at Dubai International Airport Hotel, which is located inside the airport, we would have 10 to 12 hours stopover, allowing us to put our medication into the bar fridge of our room, and refreeze the ice packs in the freezer.

When we were travelling with our oldest son, who used to have a port-a-cath and would be infused 3 times a week, it was a lot of factor to carry as we would have almost double the amount of factor if a bleed occurred overseas. We also had to carry needles, saline water, factor VIII (8) for a 3-times a week dosing and extra factor in case of a bleed.

Then, there was a change in medication, and way less factor to take with the new treatment; however, all medication had to be transported in an esky. We have now a new esky that is much more efficient than our old one and that keeps the medication at 5 degrees up to 36 hours. It has made travelling much easier and there is no need for a stopover these days.

MANAGING LUGGAGE ISSUES

In our experience, we haven’t had issues with most airlines when carrying our medication.

One time an airline made an issue regarding those extra few kilograms: wanting to charge us for that extra weight and telling us to put the medication into the checked luggage.

We were even offered an extra 10 kg of checked luggage; as much as we appreciated the gesture, it was also pretty pointless in our case as we had to take the medication on board as it had to stay in a cooler bag with us.

I raised this matter to the Victorian Equal Opportunity and Human Rights Commission under indirect discrimination: ‘Indirect discrimination is defined as when there is a rule or policy that is the same for everyone but has an unfair effect on people with a particular disability.’

I believed this was discriminating towards people who had to travel with medication.

This particular airline did not have a clear policy on their website and wanted us to pay for extra carry-on luggage.

After all, it isn’t something we choose to travel with, it is something we have to travel with.

After few months of back and forth, I was granted an extra 10 kilos of carry-on luggage for a period of 2 years from this airline.

TAKING ON ADVENTURES

These days we do not have this issue, as even with 2 boys with haemophilia, we have way less medication and airlines are fine with us when we are travelling. We have travelled to France, Bali, Spain, we have cruised around the Mediterranean Sea, we have just been back from Borneo, Malaysia. It was a bit of an adventure. We encountered some limitation in our planning though; for example, we wanted to do a jungle stay, which we couldn’t as there no refrigeration possible in the jungle – which is fine, we are already very lucky to be able to travel. We are already planning our next trip to Canada next year… The sky is the limit! We are very grateful for the new treatment that have been made available in the past few years and made travelling so much easier.

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