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'I am denied wonder bone drug because I'm a man'
Last updated at 23:22pm on 19.11.06
John Verrier Jones: The 75-year old was refused £5,000 treatment for his osteoporosis because of his gender
A retired doctor crippled by the brittle bone disease osteoporosis has been denied a life-changing drug on the NHS - because he's a man.
John Verrier Jones, 75, was refused the 18-month course of injections costing £5,000 even though his consultant recommended him for the treatment.
The father of three has appealed against the decision by health bosses.
He said: 'It's shameful discrimination that this drug is available on the NHS to women with the same criteria I have but it's not available to me just because I'm a man.'
The drug, called Forsteo, is a synthetic version of a bone-stimulating hormone which can increase bone density and improve resistance to fractures.
The UK's drug regulation body, the National Institute for Clinical Excellence, has recommended it for use on post-menopausal women but not on men.
However, NHS trusts are free to give the drug to patients if they believe it's the best treatment.
For many years, osteoporosis was considered to be a disease suffered exclusively by older women. Men are less vulnerable to the condition because they tend to build stronger bones, but even so one in 12 are affected.
Ten years ago, Dr Jones was treated for prostate cancer. He recovered but the treatment left him with the side-effect of thinning bones. He began to suffer agonising pain and sustained a number of broken bones caused by the slightest knock.
Seven of his vertebrae fractured and collapsed before he shrank five inches in height and his spine began to twist. The twist constricted his lungs, which forced him to fight for breath and gave him a hunchback.
He begged for funding for daily injections of Forsteo on the NHS but was refused, so he began paying for the treatment himself.
The injections quickly improved his condition. He stopped suffering fractures and his pain was greatly eased - but then he ran out of cash.
Dr Jones's consultant at the Bristol Royal Infirmary recommended him for the treatment but Bristol Primary Care Trust refused because Forsteo is licensed only for women.
Dr Jones, who lives with his wife Edith in Bristol, said: 'Since this has got its teeth into me I have only been able to walk several metres and have great difficulty getting upstairs.
'For some reason, NICE seems to have forgotten about men. This is clearly the best treatment and men are being denied.'
A National Osteoporosis Society spokesman said: 'If a clinician thinks it's the right treatment, patients should expect that treatment.'
The Bristol Primary Care Trust said drugs that had not been licensed and evaluated by NICE were not normally made available because an assessment of side-effects and benefits had not been carried out.
A spokesman added: 'We understand this can cause disappointment but there have been cases where drugs that have been made available in the past have had to be withdrawn because they were found to be more harmful than beneficial.'
NICE said NHS trusts were free to make their own decision on whether to use Forsteo, based on the judgment of their medical staff.
Reader views (3)
To deny DR Jones atreatment which he has shown to be effective does not seem rational. It is particularly unfair to deny him the treatment just becaus of his gender.
CFMcCarthy
- Ciaran Mccarthy, Ireland, 18/02/2009 15:48
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What do they suggest differs between the genders which causes this drug to be known safe for women but not for men?
- Dan, Liverpool, 30/06/2008 07:09
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Clearly this is sexual discrimination and should be challenged on that basis.
They are not saying it has been investigated and been found unsafe for men but just that they have not considered it for men.
Men are suffering bone loss and proper treatment in order to avoid future physical disability or death is unlikely to be readily available.
It is disgraceful and shortsighted as the cost to the NHS of such disability is likely to be high as well as the personal cost of pain and suffering to the individual and the loss of that person's abilities and normal way of life will be to their families.
Can such prima facie evidence of sex discrimination be challenged by the legal profession?
- Mrs Searls, UK, 25/11/2006 13:51
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