Travel Insurance

[NannaFlo]

This is the first time I have posted on here although I read it daily.

Has anyone experienced the following or can offer any advice regarding it.

I was originally diagnosed in May 2021 with ET - CALR and at that time was covered by my partner's travel insurance. In March 2023 my diagnosis was changed to Pre Fibrotic Myelofibrosis (PFM). This was not covered by the insurance and I was forced to look elsewhere which sent the cost soaring. All of the insurance companies that I contacted would not recognise PFM and could only quote me for full blown Myelofibrosis.

My consultant has emphasised that my condition is PFM but is still closer to ET than MF.

Does anyone know of any insurance companies that will cover PRE Fibrotic Myelofibrosis.

Thanks in advance for any help or information you can give me.

[MaryandPete2]

I have exactly the same condition as you and was diagnosed in March this year. I got in touch with MPN and they gave me several companies that will insure you.

Like you I couldn’t find a specific company that would stipulate Prefibrotic Myelofibrosis except Staysure.

However it’s expensive, my annual premium almost doubled. But I do travel regularly to the USA to visit grandchildren every year.

My consultant offered to give me a letter stating my condition.

The best of luck trying.

[ChillyAsh34]

Try all clear ,payingtoomuch,I have staysure but not renewing again very expensive

[JP1952 in reply to ChillyAsh34]

I agree, Staysure very expensive, and they would not let me upgrade my annual policy for a second trip so we had to take out another single trip policy within the same year. I won't be using them again.

[NannaFlo]

Thank you for your replies. I have found a company called Avanti who has been very helpful and provided me with 12 months cover. They still didn't recognise PMF only MF but were much cheaper than the others.