A raw deal for OM patients

Why do OM patients get a raw deal?

Like other rare cancer sufferers OM patients often find themselves in front of doctors with no specific knowledge of their condition. In itself this is not necessarily a bad thing and many doctors are prepared to research and investigate on a patient’s behalf. However, without a specific ‘care pathway’, or established treatment route, it is often the case that patients are misdirected or made to wait when what they need is urgent treatment for a particularly aggressive cancer.

Access to treatments is subject to cost considerations. Unless there is solid evidence of clinical benefit from a particular treatment then there is a reluctance to spend. In the case of OM, where there is less aggregate data from studies and less trial data available because it is so rare, this means anecdotal evidence of the performance of certain drugs and treatments is the best indicator — typically this is not sufficient to swing it with the purse string holders within the NHS. Many OM patients who’ve applied via the Individual Patient Treatment process have been turned down for promising treatments.

Clinical trials for melanoma often exclude OM sufferers. Let’s imagine there is funding for a trial for a new melanoma treatment and a decision has to be made about who will participate. Those conducting the trial want to return the best data available and would probably want, say, 100 skin melanoma patients rather than 93 skin and 7 OM patients. This isn’t because they are mean spirited, indeed many of those in the medical profession we have met have bent over backwards to accommodate Iain’s needs, but because by mixing the participants in this way introduces Type I and Type II data errors which affects confidence in the results and any claims for the efficacy of the treatment or drug.

The upshot of all this means that OM sufferers will have to pay for treatments that might otherwise have been available via a trial. Further to that there is an institutional reluctance within the NHS to pay for treatments where lack of clinical benefit can be cited even if anecdotal evidence is strong — the result, again, is that OM sufferers have to cough up.

Congratulations, you’ve won the Rare Cancer Lottery! As new treatments come along in the fast moving field of melanoma research OM sufferers can expect to pay whilst the tectonically slow machinery of NICE waits 5 years before NHS approval is given. And even then there is no guarantee the costs are covered.

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