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Exciting developments in Huntington's disease research, but funding disparity remains

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With a new clinical trial starting worldwide and globally more money than ever before being committed to research, the fight to find a cure for the devastating neurological condition Huntington’s disease (HD) is more positive than ever, explains John Eden

The first drug that can potentially correct the underlying defect that causes HD is now underway at University College London.

It is the first time that we will be making real progress in developing a medication that will actually slow or prevent the progressive damage to the brain.

Despite this exciting development, funding for research should not deflect from the responsibilities we have for caring for people already living with the condition. Those of us working in the sector have been aware of under-investment in the care of people with rare neurological conditions for some time.

Now there is research to back up the anecdotal evidence. Scottish Huntington’s Association (SHA) has found that health and social care spending on incurable neurological conditions attracts far less funding per person than diseases such as cancer.

“Health and social care spending on incurable neurological conditions attracts far less funding per person than diseases such as cancer”

Our figures show that each HD patient has on average £7,500 spent on their medical treatment each year. This covers medication, psychiatrist and neurological treatments and also wider social care. Support from speech and language therapists, dieticians, occupational health specialists, physiotherapists and social workers is all necessary to ensure people living with HD have the best quality of life possible.

This £7,500 is only a small percentage of what is dedicated to diseases we might call “mainstream conditions”.

In their report entitled, Cancer Diagnosis and Treatment: A 2021 Projection, healthcare provider BUPA estimates that the cost of cancer diagnosis and treatment will rise from £9.4billion in 2010 to £15.3billion by 2021 – an increase of £5.9billion.

This will mean that while in 2010, the average cost of treating someone diagnosed with cancer was approximately £30,000 a year; by 2021 this will rise to almost £40,000.

It is never an either/or situation, but there is a clear deficiency in spending when it comes to what resources go towards treating what condition.

With conditions such as HD it has often been a case of out of sight, out of mind. With only around 1,100 people diagnosed with the disease and a further 5,000 or so at risk it is off most people’s radar.

What it lacks in commonality though it more than makes up for in impact.

”With conditions such as HD it has often been a case of out of sight, out of mind”

HD is caused by the brain producing a mutant protein called huntingtin which damages and ultimately kills off brain cells. People diagnosed with HD can expect changes to muscle control, thinking processes and long-term mental health issues.

The average age of onset is between 33 and 45 and those living with the condition will require 24 hour care as it progresses into its later stages. Each child of someone diagnosed with HD is at 50% risk of developing the condition themselves.

The impact on families is hard to imagine, and when seen first hand it is hard not to conclude that there needs to be a more realistic realignment on medical and social care spending priorities.

“There needs to be a more realistic realignment on medical and social care spending priorities”

The number of referrals we have dealt with has increased by 55% since 2012, an increase in prevalence in HD the Scottish Government is thankfully becoming more aware of.

As the only charity working with HD families in Scotland they have provided funding to us to develop a new national care strategy to ensure constant care standards across the country. They are also funding a new research fellowship at the University of Aberdeen to look into what HD families think should be care priorities.

With the record levels of research into HD there is definitely hope for a future effective treatment.

But this cannot be at the expense of the quality of life of those currently living with the condition who will continue to need our help and support for many years to come.

John Eden is Chief Executive of Scottish Huntington’s Association

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