The Cost of Cystic Fibrosis

At 4pm in London, you’ll find me sat at my desk on the fifth floor of an old biscuit factory-turned-photography studio, hunched over a radiator on wheels while the sun is setting outside. A month ago I was sitting on a boat under a clear blue sky touring an immense Floridian lake surrounded by mansions that are owned by professional golfers and heiresses to kitchenware companies. Neither of these settings might be the place you’d expect to find me if I told you I had Cystic Fibrosis. Normally those words might bring to mind thoughts of hospitals, lung transplants and oxygen tanks (and not just because that’s the message you got from the Five Feet Apart film) – but as always, I’m here to tell you that having CF is so much more than that.

When my parents brought me home from the hospital, newly diagnosed with a list of permanent medications and a full treatment regime, I’m sure they were worried; will she be able to play and run just like other kids? Will she be able to grow up doing everything everyone else can? The answer to these questions is yes. It wasn’t always easy and I did spend time in hospital along the way but I’m here now to say I did my exams, went to university, graduated and even moved to London for my first job. In between all of this, I even went travelling for 3 months – something I was lucky enough and healthy enough to do. While working out how I’d manage without quick access to my clinic team and if I’d be able to carry that many medications through Asia, one thing that hadn’t crossed my mind was the cost of travel insurance.

The cost of having Cystic Fibrosis is something they don’t warn you about when you receive your diagnosis. Not only does it cost to miss work when you have hospital appointments or when you need to be admitted for a course of IVs, it also costs to collect prescriptions as they aren’t free for adults with CF, even if we are on over 10 different drugs. Then there’s the insurance… there’s an added price tag on car insurance if you’ve got CF-related diabetes and there’s only a very limited (and very expensive) list of travel insurance plans left once you declare a long-term health condition.

Have you ever tried finding cover for a 3 month trip to Asia, Australia and America when you have an incurable lung condition? Out of three options available, the cheapest was over £2000.

Luckily, the CF community is one that is very prominent on social media (mostly because we can’t meet up in person) and thanks to one of the Twitter accounts I follow, I found InsuranceWith. As specialists in travel insurance for those with medical conditions, they understand that it’s different for everyone, which is why they have adapted lists of questions that will find the best policy for you. For a fraction of the price offered by other providers, I was able to find insurance that covered me while I completed a bungee jump in Queenstown, New Zealand, flew in a helicopter over the Grand Canyon and snorkelled in the Great Barrier Reef (no deep diving for these lungs).

I’ve never been someone to let my condition stop me from doing anything, so with affordable insurance, I can keep travelling and seeing the world just like everyone else.

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// Beth