Two boys dying of the same rare disease need access to experimental drug – but only one can get it - HabariCloud
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Two boys dying of the same rare disease need access to experimental drug – but only one can get it

Australia

Two boys dying of the same rare disease need access to experimental drug – but only one can get it

Although two boys are being treated for a rare and deadly disease in the same hospital, only one has access to a potentially life-saving experimental drug.

The children, both patients at the Royal Children’s Hospital in Melbourne, are suffering from a devastating genetic illness.

One boy has been provided with medication thanks to a private deal, but the other is due to lose access within days when a temporary arrangement expires.

Two boys are being treated for a rare and deadly disease in the same hospital, but only one has access to a potentially life-saving experimental drug (pictured is Health Minister Greg Hunt)

Two boys are being treated for a rare and deadly disease in the same hospital, but only one has access to a potentially life-saving experimental drug (pictured is Health Minister Greg Hunt)

Two boys are being treated for a rare and deadly disease in the same hospital, but only one has access to a potentially life-saving experimental drug (pictured is Health Minister Greg Hunt)

The boys are believed to be the only two children in the country who require the medication, and one moved overseas last year to benefit from a clinical trial. 

The drug, which is yet to be be granted full approval in Australia, costs $900,000 a year, The Herald Sun reported.

The hospital said it was concerned with the unequal treatment and had written to federal Health Minister Greg Hunt.

In a statement to The Herald Sun, the RCH said it was ‘strongly committed to equity for all children.’

The children, both patients at the Royal Children's Hospital in Melbourne (pictured, stock image), are suffering from a devastating genetic illness

The children, both patients at the Royal Children's Hospital in Melbourne (pictured, stock image), are suffering from a devastating genetic illness

The children, both patients at the Royal Children’s Hospital in Melbourne (pictured, stock image), are suffering from a devastating genetic illness

‘The RCH position is that all children are entitled to equal access to treatment, under the same conditions and for the same time frame,’ the statement said. 

A spokesman for the minister told Daily Mail Australia the medication is being considered by the Pharmaceutical Benefits Advisory Committee at their July 2018 meeting. 

‘The Minister has spoken with both the RCH and the pharmaceutical company,’ the spokesman said.

‘[The Minister] is confident the patient will continue to have access until such time as the medicine is listed under either the PBS or Life Saving Drug Program.

‘We are advised by the company that an order for further medicine has been placed and that the company has already fulfilled that order.’ 

The name of the illness has been kept confidential to protect the privacy of the children. 

Daily Mail Australia contacted Royal Children’s Hospital for comment.

http://www.dailymail.co.uk/news/article-5949037/Two-boys-dying-rare-disease-need-access-experimental-drug-one-it.html?ITO=1490&ns_mchannel=rss&ns_campaign=1490 Source: MailOnline | Copyright © MailOnline, All Rights Reserved

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