It is a genetic condition that is incurable, life-shortening and causes a suffocating build-up of mucus on the lungs. But people with cystic fibrosis fear they will fail to qualify for funding under the national disability insurance scheme - now called DisabilityCare Australia - if their condition is not considered ''severe'' enough. Complications of the disease usually increase with age and patients gradually need more care. Until that point, Cystic Fibrosis NSW chief executive Michelle Adair fears those with the disease will be unable to claim the scheme's benefits. ''Cystic Fibrosis is acknowledged as a disability, however there is a major problem with access to ongoing support services for people who have it,'' she said. ''That's because of the episodic and intermittent nature of the illness. At times someone can live manageably and work, at which point they lose access to their healthcare card and social support services, so their costs skyrocket.'' The needs of those with cystic fibrosis vary but even when the condition is less severe, daily physiotherapy and medication, and access to ventilators and nebulisers, is needed. Patients may not reach the age of 40. A spokesman for Minister For Disability Reform Jenny Macklin said people with a permanent disability who needed assistance - to get around or communicate, for example - would ''likely'' get support from the new scheme. ''However, there isn't a list of who is in and who is out because the scheme is designed to be about what an individual can do and what they need to function. ''Consideration will be given as to what supports other systems, such as the health system, might more appropriately provide to the person.'' Cody Sheehan, 24, has cystic fibrosis and is independent. However, the health system has not always been there for him. He fears being left unsupported once he leaves university and loses access to a healthcare card. The cost of medication, equipment, nutritional supplements and oxygen with a healthcare card is at least $3000 a year. Without the card, he and his parents pay $3000 a month. ''When I turned 16, the card was taken away and I didn't have one for six years until I went back to university,'' he said. ''Just because I can get around and do things, it doesn't mean there isn't an enormous burden. ''When I finish uni and lose my healthcare care, my only lifeline will be taken away and it doesn't seem like the NDIS will take its place.''