Family forced to fund life-saving treatment

THE family of a teenager forced to pay tens of thousands for a cancer drug denied to him by the NHS in Scotland has criticised the "postcode lottery" faced by patients trying to access life-prolonging treatments.

Jamie Marshall Macdonald was diagnosed with osteosarcoma, a rare type of bone cancer, last September. After surgery to remove the cancer, the 18-year-old had the regular course of chemotherapy for patients with this disease.

But when the family's own research suggested another drug - Mepact - could improve his chances of survival, their attempts to have it prescribed by the NHS were denied.

The same drug - which costs 114,000 for a 36-week course - has been given to patients in England through a special fund set up last year to pay for expensive cancer treatments.

Jamie's parents, Simon Marshall and Ann Macdonald, have now attacked a system in which patients in some parts of the UK are given drugs denied to others.

The family's case has reignited debate about how to fund expensive drugs from increasingly tight NHS budgets, with some politicians saying there should be no differences within the UK in terms of access to NHS resources.

Jamie's family, from Glasgow, discovered he had cancer after he suffered symptoms that included a painful lump on one of his legs.

The cancer was caught at an early stage and he had chemotherapy followed by surgery to remove a tumour. Since then he has had standard chemotherapy treatment.

Then, while researching the disease, the family found out about Mepact, which can be used alongside chemotherapy to reduce the chances of cancer returning. Studies have found that 68 per cent of patients on Mepact survive without the disease coming back, compared with 61 per cent of patients who did not receive it. Crucially, it also reduces the risk of dying from the disease by 28 per cent.

"Our reading and research on various websites drew our attention to Mepact as an additional drug treatment. So we opened discussions (with doctors] about that," Marshall said. "We thought that, in addition to the other treatment, this might be beneficial."

The family were told that the drug had not been recommended for NHS use by the Scottish Medicines Consortium (SMC), which assesses drugs, and they would have to make an application for exceptional funding through their health board. Although their doctor supported their application, NHS funding was refused.

The family has now used savings and donations from relatives to pay for the drug but are concerned other patients may not be able to afford it. "Very few people would be in the fortunate circumstances we have found ourselves in," Macdonald said.

The couple praised the care given to Jamie, who hopes to study sociology at university, by the Beatson Cancer Centre in Glasgow. But they said they had concerns about the process of assessing drugs for rare diseases and also the systems in place for exceptional funding. Marshall said that given the rarity of osteosarcoma - which affects just 150 people in the UK each year - Mepact should never have been rejected by the SMC in Scotland or its English equivalent, the National Institute for Health and Clinical Excellence.

The 250 million Cancer Drug Fund was introduced by the coalition last October to fund drugs rejected by the assessment bodies but recommended by clinicians.

Campaigners are concerned that inequalities of care will persist unless money is put aside for cases where general funding is not available.

The Scottish Conservatives are proposing the introduction of a Scottish Cancer Drugs Fund, of up to 10m a year.Health spokesman Murdo Fraser said: "Sadly, Jamie's plight is not unique in Scotland. We believe that it is unacceptable there are expensive cancer drugs, recommended by doctors, available to patients in England and Wales, but not available in Scotland."

Scottish Labour's health spokeswoman Jackie Baillie said: "It is vital that those suffering from rare conditions get access to the medicines they require and we must ensure that patients in one part of Scotland are not disadvantaged compared with patients living in England and Wales."

An SNP spokesperson said: "Everyone recognises the importance of decisions on medication and treatment being made by health professionals and not politicians. When consultants recommend access to medicines we expect health boards to respond flexibly and favourably to requests."