travel insurance question

[Avamia94]

attempting to get some travel insurance due to having ET and a facial dystonia does anyone know if they are classed as a terminal prognosis?

[Paul_1971]

Hi,

Well i don't know much about facial dystonia, but with regards to to ET and other MPN's absolutely not when it comes to terminal diagnosis.

I would class a terminal diagnosis as a matter of months, patients with ET can usually expect to live a normal life span. Of course we are all different but unless a doctor has said there is nothing else that can be done and given an estimate on lifespan in the VERY short term then absolutely its not a terminal diagnosis.

Paul

[Avamia94 in reply to Paul_1971]

Thank you I thought I wasn't but wanted to double check.

[MKS60 in reply to Paul_1971]

I’ve just purchased travel insurance in this pandemic era (hoping to get to Hawaii) I normally get my insurance free from my credit card provider but since I now have JAK2+ PMF I had to call the company they are affiliated with and answer specific questions related to blood transfusions, infections etc and I had to pay extra $500 AUD. Well worth the money if something goes wrong while we’re in the states. Happy travels!

[Jennytheb]

Hi, I recently had to re-evaluate my travel insurance which was free with a bank account. I have JAK2 ET. When I first started with the bank I phoned the insurance company and was told I would be covered and wouldn't need to pay excess. Now the free insurance has stopped and I once again contacted them (same company) and am now told I have to pay nearly £60 excess yearly. I can honestly say I lead an absolutely normal life on Hydroxy so was very shocked to hear this. Anyone else been charged extra for this on their insurance?

I was, when diagnosed 6 years ago given a virtual prognosis of 15 years lifespan but now I am not sure this will stay, others seem to be diagnosed many years ago and still going strong, I cannot see it is a terminal diagnosis. Hope this helps.

Jenny

[ChillyAsh34 in reply to Jennytheb]

It's termed as chronic not terminal ,I got covered for ET JAK 2 with staysure cost me about £20 on my annual policy hope this helps don't know about facial dystonia

[Avamia94 in reply to Jennytheb]

Thank you I have managed to get a annual one for £66 thank you both ChillyAsh34

[Paul_1971 in reply to Jennytheb]

I was the same with Natwest, was free but they now charge to add, its still reasonable though

[NCB1983]

I have Travel Insurance through my bank (HSBC) and I called them in November to check I was still covered despite having ET and they confirmed I was still covered and then sent me a letter so that I had it in writing that it was an accepted condition and covered by the insurance. This was quite a relief as I was travelling to the US the next day! I cannot comment on the facial dystonia part of your question.

[HazeBlue]

Lots of companies won’t insure you. I managed to get travel insurance with staysure though .

[Avamia94 in reply to HazeBlue]

Staysure declined managed with all clear

[Jane-r]

I used to be insured with Staysure and covered ET but there is a paragraph in the policy which asks if you are on chemo and as I am on hydroxy told them I was on oral chemo and they said they would not cover me for ET.

[Avamia94 in reply to Jane-r]

Was on Oral chemo wow I hope as you used the word "was" things look better. Due to having two rare health conditions I got it with all clean the didn't ask about medication so hopefully you get some.

[Jane-r in reply to Avamia94]

My Heamatology consultant said that Hydroxycarbamide is classed as oral chemo. I’m with All Clear now as they don’t ask that question.

[Avamia94 in reply to Jane-r]

Wow that's bad they call it that as I wouldn't know better, they dont help us at all and yes I'm happy all clear don't ask much 😀

[Quercus53]

Hi I had no trouble getting travel insurance with Staysure, the only question they asked about ET was - have you ever had a stroke? I got an annual insurance for £135 ish - I'm 68 and also have RA.

[DJK12]

Regarding an MPN I know where you're coming from as I have Post ET MF level 2 and was asked in what was obviously a routine question by a travel insurance agent whether I had been given a terminal diagnosis. I was sure I didn't despite having been given the DIPPS scoring at clinic. However as insurers like to wriggle out from claims I asked my consultant. She appeared very shocked by the question and said no it was chronic.

[Oscarsboy]

We have M & S cover and when I phoned them to have ET (JAK2) added to my travel insurance it was no problem. They added it without any extra charge. I even asked them if they wanted to know what medication I was on. They said no the information supplied was all they needed, and obviously to inform them if any radical changes. Hope this helps. They have confirmed in writing also.

[Jennytheb in reply to Oscarsboy]

Many thanks, will try them.

[Oscarsboy in reply to Jennytheb]

Hi Jennytheb I am not sure whether they do this individually, we have Preium Club membership with them and our cover comes through that, but hope they may be able to help.

[Janis12]

Hi, I have ET and got holiday insurance no problem at the normal price the only thing they asked was had I experienced any blood clots which I guess may have raised the premium. I have two friends with dystonia and it's definitely not terminal and neither is ET by the way so happy holidays!!