AL Amyloidosis and ongoing private health insurance

This topic contains 1 reply, has 2 voices, and was last updated by  mulberry 3 years, 6 months ago.

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  • #141925

    victlitchick
    Participant

    I was diagnosed with AL Amyloidosis in 2015, mostly affecting my feet and legs. I am very fortunate insofar as there have been no negative effects on other organs and although my mobility is compromised, my condition is currently stable thanks to effective regular treatment.

    A very long-standing private health insurance policy, which I used to speed up my original diagnosis, is coming up for renewal. I’m ashamed to admit that I have only now read the policy details in full! It seems the policy will not cover me for any future treatment for AL Amyloidosis, which is defined as a chronic condition – and the NHS is in any case exemplary in every way in the treatment I receive.

    However, it seems it also does not cover me for any conditions I may develop in the future that are connected to AL Amyloidosis. I suspect, given the many, many different ways that amyloidosis presents, this clause could be applied to almost any new illness. Also, I have signed various consent forms over the past 6 years to receive different drug treatments, including chemotherapy. These forms state clearly that in some circumstances the treatment(s) could cause other conditions and cancers.

    I am strongly considering cancelling the policy on the basis that going forward any new claim I may make is highly likely to be rejected, and that the policy is in effect worthless in my situation. Has anyone on this forum had any experience of a situation like this?

    Many thanks for any and all responses to my question.

    #142129

    mulberry
    Participant

    Sorry that you have had replies to your query. You may need either legal advice about this, or at least professional opinion from your doctor.

    As you say NHS treatments are in general very good, and most people in UK rely on them completely without private health cover, as I do. However with expensive to treat conditions such as myeloma, there are advantages to the patient if they have private health cover. All NHS treatments have to go through the NICE cost benefit assessment before being approved, which precludes newer and more effective drugs being prescribed. I believe it takes on average 12-14 years for a myeloma drug to go from FDA approval to use on NHS. A patient with the best private health cover scheme potentially has access to it 12 years earlier. With the number of new drugs FDA approved over very recent years that potentially gives you an armoury only available to most of us by entering Uk clinical trials.

    I wouldn’t give up your private health cover without discussing whether it still has a value for you with someone able to give expert advice.

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