Evicenter
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Aqneursa (levacetylleucine)

Ataxia-telangiectasia

Also known as IB1001
Manufacturer
IntraBio
Last updated
206 sources

Product information and disease descriptionPlace of product in therapyDisease descriptionBurden of Ataxia-telangiectasia

Economic impact of Ataxia-telangiectasia on families

3 evidence topics · 2 sources

Household income and parental employment

“It is important to note, however, that some parents were concerned about the household income. Instances of a drastic reduction in the overall family purse caused by changes to benefits at 18 years were reported.” (opens the source at this quote in a new tab)

“In some cases parents were reluctantly working although deeply concerned that this meant their son or daughter was spending a lot of time at home without company and unable to get out and about.” (opens the source at this quote in a new tab)

Cost of mobility equipment and other one-off purchases

“Accessing funding for wheelchairs/ mobility scooters was a significant issue for some families.” (opens the source at this quote in a new tab)

“Motorised wheelchairs or scooters were other high cost items which some reported being unable to afford.” (opens the source at this quote in a new tab)

“Whilst there was general satisfaction with the level of benefits and allowances, capacity to meet one-off, high cost items was limited.” (opens the source at this quote in a new tab)

Productivity losses and informal care in inherited ataxia: a cohort that included 4 participants with ataxia-telangiectasia

“Disability associated with inherited ataxia is incapacitating; almost half of participants reported being unable to work or retiring due to their illness.” (opens the source at this quote in a new tab)

“While various financial supports from the state subsidise the indirect costs from productivity losses, almost 75% of these societal costs still fall to patients and caregivers.” (opens the source at this quote in a new tab)