Sick teenager laments drug lotto

Jo Farrow suffers from a rare illness

A teenager with a rare disease says she is being denied a drug that might help her condition.

Jo Farrow, 16, from Retford in Nottinghamshire, has MPS which is caused by an enzyme deficiency and results in stiff joints and swelling.

The primary care trust says the treatment is too expensive at £300,000 a year.

But another patient in Birmingham with the genetic illness has been allowed the treatment by her local trust.

"There is a treatment available which I should be having but I have not been allowed it," Jo told BBC News.

"It is drug (aldurazyme) that will gradually prevent it from getting worse.

We are distraught - in the knowledge that there is a treatment but we can't access it Simon and Debbie Farrow

"I have had it all my life and it will progress as I get older - it will get worse.

"I have stiff hands and a heart valve problem."

The enzyme deficiency results in problems with normal metabolism, and cells or chemicals that would normally be broken down and excreted, remain in the body.

The disease can result problems in various parts of the body, including swelling and pain in the arms and legs.

At Birmingham Children's Hospital, 16-year-old Joanna Wilson, who suffers from the same illness, is being treated with the drug.

"I feel I am very lucky because it has changed me for the better - I have only been on it for four months and I can see the difference."

"It is the best thing you could be given because it gives the chance of life again."

Her father Barry Wilson said: "We could have won the lottery for the next 10 years and it wouldn't have meant the same."

Simon and Debbie Farrow, who have four children, are angry and frustrated about the refusal.

"We are distraught - in the knowledge that there is a treatment but we can't access it," Simon said.

The drug costs £300,000 a year

Dr Richard Richards, acting director of Bassetlaw Primary Care Trust, said: "We have a duty of care to all the people of Bassetlaw - more than 100,000 - and we have to balance our duties across all those individuals.

"We based our decision on how much benefit this drug provides.

"This disease requires treatment every year for the whole of life - and £300,000 a year could buy an entire team of medical doctors and nurses to treat patients.

"I sympathise with them and I deeply care about Jo and what she will have to suffer for the rest of her life.

"But we are not clear that this treatment will definitely prevent deterioration - and we believe the benefits to her, such as her breathing, may be very small."