Monday 3 December 2012

Getting Insurance when you have MDS or similar

Getting Insurance when you have MDS or similar can be very hard. I asked Sophie via the MDS Patient Support group (http://mdspatientsupport.org.uk) , and she put me on to their Forum on 'travel topics' http://mdspatientsupport.org.uk/forum/

I have just got insurance via Freedom Insurance, Cambridge - for £236 for my wife and I for a week to Estonia - to see our son who lectures in philosophy out there. (Well someone has to 8-) )
For just the medical stuff the insurance cover would have been £197 for both of us, but the one we got also covers hotel issues, flight issues, volcanoes the lot: 8-) . This is not cheap, but there is no ambiguity of cover on either of us should there be a problem.

My wife was diagnosed with a very very mild heart problem 4 years ago - she has had no treatment, but it has to be declared. So not really a problem.

I was diagnosed with MDS RAEB II originally. My blasts got to over 10, before they put me on Azacitadine. I have been on that for 14 months, and have responded very well. My blasts now are <.5, white cells 4.4, Haemoglobin 15, Platelets 133. I have never had blood transfusions or inpatient stay. So this is a text book response best case for Azacitadine so Prof Mufti says. I am now on half dose Azacitadine, for only 5 days (it was 7), and only every 5 weeks (it was 4 weekly)

The lady in Freedom Insurance seemed very clued in, she asked intelligent questions as well as pulling up the scripted ones. She had to check with a superior about the idea of using chemo to just keep things contained for MDS, which he understood and agreed the cover

Freedom Insurance company seemed a lot more knowledgeable than Columbus, who I tried. Their script did not seem to work for what I have, and the fact that I am in remission did not figure – they declined me any insurance for the MDS aspect.
I tried to get through to World First Travel, but their computer was out of action.

I hope this helps other patients