'My life-saving drug is now under threat', says Newbury woman

After 27-year-old Kelly Bazzichi (pictured) was diagnosed with the rare condition A-HUS in 2011, she spent four months in hospital, had to give up work, and was told it was likely she would die before she was 60.
Hope came however when she was given a place on a clinical trial for a drug called Eculizumab. She says that it has given her her life back.
The trainee accountant, of Victoria Grove, said: “I had four per cent kidney function. This drug has saved my life.
“It’s amazing. Now I exercise, I work, I study. I live a really busy and fulfilled life.”
Alarmingly, her bubble could burst next year.
Future provision of the drug - which costs £250,000 per patient per year - is now dependent upon a decision from the National Institute for Health and Clinical Excellence (NICE) as to whether Eculizumab will be approved for use by the the NHS.
Although the drug had initially been approved by a government advisory group - The Advisory Group for National Specialist Services (AGNSS) - as of next month NICE will take over as the Government’s agency assessing high-cost drugs.
Health minister Lord Howe has asked for a second assessment of the drug.
Miss Bazzichi’s drug treatment will continue until the end of the trial. If approval is not given, she fears that she will have to return to dialysis and plasma exchange in hospital three times a week, a routine she will have to maintain for the rest of her life.
She said of her kidney condition: “I had one of the most aggressive forms. I was having the treatment but I wasn’t getting any better.
“I was receiving plasma exchange daily and dialysis every other day.
“This course of treatment wasn’t very effective, but it was the only option to keep me alive at the time.
"My kidneys were getting progressively worse and within weeks I was in total renal failure.”
A-HUS affects fewer than 200 people in the country.
It causes abnormal blood clots to form in small blood vessels within the kidneys and has a fatality rate of up to 25 per cent.
Even though her access to Eculizumab could only last one more year, Miss Bazzichi still considers herself to be one of the lucky ones.
“Without this drug my kidneys will soon deteriorate until they completely fail,” she told the NWN this week.
“This drug will not cure my condition, but it will make it possible for me to live a normal life.”
A petition has been set up to raise awareness of what could happen – 10,000 signatures will mean an official response is received and 100,000 signatures will mean the issue will be debated in Parliament.
Miss Bazzichi said of the drug: “I want everybody to have the opportunity to do what I’m doing, especially children.”
She added that it was “frightening” to think that there could be a drug available that could save lives, but which might not be available to patients.
It is possible to sign the e-petition, by logging on to