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?
travel insurance question: attempting to get some... - MPN Voice
travel insurance question
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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
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!
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
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
Thank you I have managed to get a annual one for £66 thank you both ChillyAsh34
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.
Lots of companies won’t insure you. I managed to get travel insurance with staysure though .
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.
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.
My Heamatology consultant said that Hydroxycarbamide is classed as oral chemo. I’m with All Clear now as they don’t ask that question.
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.
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.
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.
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!!