With new research showing that there may be twice as many sufferers of Huntingdons disease in the UK than previously believed, health insurers are being pressured to reconsider how they handle the disease, which affects muscle co-ordination, leading on to cognitive decline and dementia, and is incurable.
A government group is currently beginning a new study that will examine health databases for patients and track down how many people are being treated by for the disease, in order to know how many cases there are in the UK and improve treatment.
Professor Sir Michael Rawlins, chairman of the National Institute for Health and Clinical Excellence, has written in the medical journal, Lancet, that there should be an end to the practice of penalising those who have a family history of the neurodegenerative disease . He said greater resources should be invested into finding new treatments, which could also help research into diseases such as Parkinsons and Alzheimers .
With children of those who sufferer from Huntingdon’s having a 50 per cent chance of developing it themselves, making it comparatively easy to predict through genetic testing, it is often hard for those who have the disease to find affordable health insurance cover.
Professor Rawlins believes that a new approach would also assist in removing some of the stigma surrounding Huntington's, "Stigma has had a deleterious effect on studies that have sought to investigate its epidemiology."




