Ex-priest who volunteered for blood drug trial sues pharmaceutical firm for more than £1million after suffering ‘catastrophic’ brain damage


  • Adrian Hailer took part in an early trial for Jakavi to treat rare blood disease
  • 77-year-old left severely disabled, partially blind, unable to care for himself
  • Was enjoying healthy retirement before taking pill in 2012, his lawyers say
  • Two months into the trial, he became confused and suffered memory loss
  • He now needs 24-hour care and neurological therapy not available on NHS
  • His wife, Maggie, says all of their savings are being spent on Adrian’s care

A former priest is suing a pharmaceutical company for more than £1million for ‘catastrophic’ brain injuries he developed after taking an experimental new drug.

Adrian Hailer was left severely disabled, partially blind and unable to care for himself after he took part in an early trial for Jakavi to treat a rare blood disorder, documents to be filed at the High Court will claim.

Lawyers say Mr Hailer, 77, who was a Catholic priest for 25 years, suffered from a mild form of the condition but was otherwise enjoying an active and healthy retirement before taking the pill in 2012.

But within two months of the trial starting, Mr Hailer began to develop confusion and memory loss and within weeks could not walk or talk.

Severely disabled: At one point, doctors gave Adrian Hailer (right) - pictured with his wife Maggie - six weeks to live

Severely disabled: At one point, doctors gave Adrian Hailer (right) – pictured with his wife Maggie – six weeks to live

Warning: Jakavi's manufacturer, Novartis, has now updated its packaging to include the risk that it could affect the immune system

Warning: Jakavi’s manufacturer, Novartis, has now updated its packaging to include the risk that it could affect the immune system

By the end of 2012, he had suffered brain damage as a result of an infection of the nervous system called Progressive Multifocal Leukoencephalopathy (PML). At one point doctors gave him six weeks to live.

Lawyers will argue that the drug, also known as ruxolitinib, affected his immune system, making him more susceptible to the infection. Manufacturer Novartis has updated its packaging to include this risk and it is understood other cases of different infections in people testing the drug are being investigated.

Lawyers say they are aware of unconfirmed reports of one UK patient who died while taking it.

However, Novartis has claimed there is no proven link between its product and Mr Hailer’s injuries. It is refusing to help pay for his care, despite being signed up to the Association of British Pharmaceutical Industry’s compensation guidelines.

Mr Hailer, from Slough, has since made a partial recovery but needs 24-hour care and expensive neurological therapy not available on the NHS. He is being cared for by his wife Maggie, whom he married after his time as a priest. She told The Mail on Sunday: ‘All our savings are being spent on his care.’

Mr Hailer was diagnosed with myelofibrosis, a rare bone marrow disorder, in 2000. After he was diagnosed with an enlarged spleen – a common side effect – in 2012, he volunteered for the trial for Jakavi, which is licensed for myelofibrosis in the US but not in the UK.

Mr Hailer’s lawyer Gene Matthews said: ‘Mr Hailer suffered catastrophic brain injuries and it seems clear from the expert evidence available that they were caused by the trial drug.’

Mr Matthews, of specialist law firm, Leigh Day, also represented victims of the ‘elephant man’ clinical trial at Northwick Park hospital in 2006.

Novartis initially offered a payment as a ‘goodwill gesture’ but the Hailers turned it down because it came with a strict gagging clause.

Last night a company spokesman said: ‘Based on the medical evidence received from independent medical experts, Novartis is unable to establish on the balance of probabilities that Mr Hailer’s development of PML was caused by his participation in the trial.’

Read more: http://www.dailymail.co.uk/news/article-2915009/Ex-priest-volunteered-blood-drug-trial-sues-pharmaceutical-firm-1million-suffering-catastrophic-brain-damage.html#ixzz3PBK595KQ
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