A SLIGOMAN whose 41-year-old wife contracted an incurable deadly brain disease while using Elan's Tysabri multiple sclerosis treatment has received assurances from the company's CEO and chairman that they'll work closely with his trust to provide detailed information on the condition.
Addressing Elan's annual general meeting yesterday, accountant Declan Walsh asked Elan management to "make all resources" available to ensure the best possible care for his wife, Natalie Murphy (right).
She's in a paraplegic state in Sligo general hospital and is unable to speak after she contracted PML in 2009 having been using Tysabri since about 2006. She's the only known Tysabri user in Ireland or the UK to have contracted the disease. PML is a known, but very rare potential risk factor associated with Tysabri. Only 124 PML cases have so far been identified among Tysabri users, while 23 of those patients have died.
Close to 60,000 people around the world are currently using Tysabri. Elan is currently rolling out a new blood test, so Tysabri patients can better weigh up the risks of taking the drug if they carry specific antibodies. Speaking to the Irish Independent following the AGM, Mr Walsh -- who established the Deferno Trust (defernotrust.org) -- said he welcomed the assurances from CEO Kelly Martin and chairman Bob Ingram that they'll follow through on his proposals.
These include the establishment of a PhD research programme into Tysabri-related PML, and the appointment of a specific patient liaison officer.
Mr Walsh's wife is a pharmacologist and at one time she worked as a product manager with drug giant GlaxoSmithKline -- the company where Mr Ingram was once vice-chairman of pharmaceuticals.
He added that Elan had failed to effectively engage with him last year when he first raised the issue of his wife's condition, which he estimates results in medical costs of about €600,000 per annum for the health service.
"There was absolutely zero interaction between Elan and ourselves. The only interaction was when she was initially diagnosed," said Mr Walsh. "I had to come here to try and make a point. My beautiful wife is dying. From the outset, I've made it quite clear I'm not interested in any legal suit."