Jane Tomlinson widow asks for cancer drug review to end drugs postcode lottery

Fund-raiser Jane Tomlinson's husband and the NHS trust that treated her have called for a review of the availability of advanced trial drugs. Mrs Tomlinson's husband Mike said she found it "distressing" that she could not get access to Lapatinib, when it was available elsewhere in the UK.

She had to make a 150-mile round trip to Nottingham to get the drug.

Along with the Leeds Teaching Hospitals NHS Trust, he has asked the government to stop it happening to other patients.

"Potential life expectancy should not depend on the location where the person resides" Mike Tomlinson

Mrs Tomlinson died in September, aged 43, after a seven-year cancer battle.

While terminally ill, she raised more than £1.75 million for charity by running in three London Marathons, several triathlons and The Great North Run.

Mr Tomlinson said his wife's medical team in Leeds decided Lapatinib was her best option. It costs £6,700 per patient, per year.

However, Leeds Teaching Hospitals NHS Trust had taken the decision not to participate in a GlaxoSmithKline-sponsored access study of the treatment.

He said: "Clearly it was quite distressing for Jane to find that she would no longer be able to have the treatment that everyone thought would be most suitable for her. It caused a lot of distress to her and a lot of upset."

Mr Tomlinson said further approaches were made to the drug company itself and to the NHS in Nottingham, where she was eventually accepted on to the trial in April.

However, he said the delay in getting on to the trial in Nottingham severely affected her health.

"There was no doubt in our minds that delay and inability to get treatment had a long-term impact on Jane's health at that time," he said.

"This is the National Health Service. Potential life expectancy should not depend on the location where the person resides.

"She was extremely cross that there were inconsistencies across the health service which allowed some patients treatment and some patients not treatment."

'Deeply disappointed'

Mr Tomlinson said his wife had asked him to speak out after her death.

Mr Tomlinson said making his wife travel to Nottingham for treatment was "inhumane" and "caused unnecessary aggravation to Jane at a time when she was at her most vulnerable".

He said: "Jane has been fundamentally let down by an unjust system. She has received many tributes over the last month. The most fitting would be the resolving of this issue."

Dr Phil Ayres, deputy medical director of the Leeds Teaching Hospitals NHS Trust, said: "We were deeply disappointed not to be able to offer Jane the treatment she and her consultant wanted.

"We support Jane and Mike's views that we need a debate about access to drugs that have not yet been licensed or nationally approved.

"It is currently a difficult and uncertain process to make investigational drugs appropriately available."

From:
http://news.bbc.co.uk/1/hi/england/7029234.stm

Health Direct is disgusted with the way the NHS treated Mrs Tomlinson- especially as she raised so much money for cancer care. Hopefully change may eventually to be on the way:

On Sept 06, 2007 Health Direct posted: NHS Postcode lottery to be challenged in the courts
as the European Commission has been asked to investigate whether a local health authority can refuse to pay for drugs when funding is available elsewhere.

Tory MEP Chris Heaton-Harris claims the so called NHS postcode lottery breaks European anti-discrimination laws.

Mr Heaton-Harris said: "If you're being withheld treatment because of where you live, it could be as similar as being denied treatment because of your religion or colour."