On Air Now
Heart's Feel Good Weekend with Zoe Hardman 12pm - 4pm
Rare blood disease treatment could be cut for a North Devon woman.
27 year old Elena Lilly from Barnstaple has atypical Haemolytic Uraemic Syndrome (aHUS) kidney disease.
The 20 thousand pound a-month drug needed to cure the often fatal disease, eculizumab, is too expensive for the NHS although being the only available treatment.
It has been found effective in preventing death and kidney failure in sufferers.
Whilst being on the three-year trial of the drug, which ends in October, Elena saw improvements in her quality of life.
She only had to go into hospital once a fortnight for treatment, rather than having to travel to Exeter three of four times a week.
She also felt much healthier as the previous plasma exchange treatment had made her ill, being sick and struggling to eat which resulted in having to give up her job. The only alternative treatment is dialysis.
A group of aHUS sufferers, family and carers have presented a petition to David Cameron to ask him to make the drug available through the NHS for all who need it.
The government's health ministers had previous chosen to ignore suggestions from the Advisory Group for National Specialised Service to make the drug available to the 150-300 people in the country it affects.
For more information on the condition CLICK HERE
If the drug treatment is made available through the NHS Elena would be able to stay out of hospital, work for a living and have an improved quality of life.