It is ages since I posted. For those of you who remember me and/or my wife, Val, I can tell you that she is still stable on Imatinib 14 years after diagnosis. Now she is on a 200mg daily dose (half the standard dose) as recommended for her by the Hammersmith. All is good on that dose and the side effects of Imatinib are very much reduced. Good news for us, and I hope her long experience of CML can be an encouragement for those who are recently diagnosed for the first time.
Every year, I dread the travel insurance renewal medical screening. We insure with AXA (excluding cover for CML). They are using out of date and largely irrelevant questions about CML: Has bone marrow (or stem cell) transplantation been performed? Have any relapses following treatment occurred? How long ago was the diagnosis made? Are you taking strong painkillers every day for this condition?
Yet again, my blood pressure went up as I tried to explain that the questions had little or nothing to do with CML and how treatment is now carried out. It is bad enough having CML without having to endure such ignorant questions. I suspect all of the wonderful doctors at the Hammersmith would be horrified by these questions and that honest answers lead insurers to refuse cover for CML.
So I have written today to AXA's head of Medical Screening explaining my views and asking them to review these questions and consequential cover. In the event that they use third party medical screening software, I have requested the name of the company so I can write to them directly.
I will post again when I get their response.
I do think a bit of militancy from us as group of affected individuals about this is well overdue!
David