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#Spinraza

# spinraza - Wednesday 8 July, 2020

'I've can't lift my arms, brush my hair, or even go to the toilet alone': Children still waiting on Spinraza drug, Dáil told
# Dáil
# Dáil

'I've can't lift my arms, brush my hair, or even go to the toilet alone': Children still waiting on Spinraza drug, Dáil told

Jul 8th 2020, 5:44 PM 11,398 Views 1 Comment

The drug is used to treat SMA which can develop in babies and toddlers and can significantly reduce life expectancy.

# spinraza - Tuesday 11 June, 2019

Spinraza campaigners 'finally have hope' as HSE approves access to drug for rare disease
# Sma
# Sma

Spinraza campaigners 'finally have hope' as HSE approves access to drug for rare disease

Jun 11th 2019, 2:00 PM 8,607 Views 5 Comments

The drug has been approved for children with SMA Type I, II or III on “an exceptional and individualised basis”.

# spinraza - Wednesday 15 May, 2019

'We need to do right by families': Call for HSE to fund drug for rare disease after NHS approval
# Spinraza
# Spinraza

'We need to do right by families': Call for HSE to fund drug for rare disease after NHS approval

May 15th 2019, 12:29 PM 6,246 Views 4 Comments

Spinal muscular atrophy weakens muscles and causes problems with movement, breathing and swallowing.

# spinraza - Sunday 10 March, 2019

'We are failing these children spectacularly': Row over drug with 'exorbitant' cost rumbles on
# Spinraza
# Spinraza

'We are failing these children spectacularly': Row over drug with 'exorbitant' cost rumbles on

Mar 10th 2019, 8:00 AM 9,219 Views 13 Comments

Negotiations, and clashes, over the price of Spinraza are ongoing behind the scenes.

# spinraza - Thursday 28 February, 2019

'Look in my child's eyes and tell him his life is not worth saving': Parents call for access to medication
# Spinraza
# Spinraza

'Look in my child's eyes and tell him his life is not worth saving': Parents call for access to medication

Feb 28th 2019, 12:52 PM 10,372 Views 28 Comments

About 26 children with SMA, a rare muscle-wasting condition, could benefit from Spinraza.

# spinraza - Monday 25 February, 2019

'A price has been put on the value of life': HSE will not reimburse drug for children with rare condition
# Spinraza
# Spinraza

'A price has been put on the value of life': HSE will not reimburse drug for children with rare condition

Updated Feb 25th 2019, 7:54 PM 23,202 Views 62 Comments

The HSE said the current price of Spinraza – more than €20 million over five years – is not cost-effective.

# spinraza - Sunday 3 February, 2019

'You wouldn't tell a child they couldn't have chemo, but our son is being denied the medication he needs'
# Spinraza
# Spinraza

'You wouldn't tell a child they couldn't have chemo, but our son is being denied the medication he needs'

Feb 3rd 2019, 4:00 PM 19,262 Views 17 Comments

Parents of children with a rare genetic condition are fighting for access to a potentially life-changing drug.

# spinraza - Saturday 7 January, 2017

'If she gets another chest infection she probably won't make it, that’s the reality'
# SPINAL MUSCULAR ATROPHY
# SPINAL MUSCULAR ATROPHY

'If she gets another chest infection she probably won't make it, that’s the reality'

Jan 7th 2017, 7:25 AM 31,586 Views 16 Comments

Nellie and Lara are the only two children in Ireland with Spinal Muscular Atrophy Type 1 – an extremely rare genetic condition.