Jane Tomlinson refused treatment

I caught the tale end of a news item on TV this morning that Jane Tomlinson was refused a cancer drug in the last couple of months of her life. Her trust was Leeds and they refused but, apparently, the drug was offered elsewhere in the country.

Talk about killing the golden goose! Jane has done so much for raising the profile of cancer sufferers (not just breast cancer) and for showing just how much the cancer services can do for terminal patients, despite the criticism (within the medical profession not just outside it) that it is throwing good money after bad. That is without mentioning the millions that she has raised for cancer research, the morale boost for all those of us unwilling to run anywhere and the inspiration to ‘get on and life life to the full’ which she embodied.

I am so angry I am going to write to my MP but I need to know what drug she was refused - could it have been Tykerb? Does anyone know?

Blondie

Here’s what the Guardian says about it:
Tomlinson family cancer drug plea
Press Association
Friday October 5, 2007 6:38 AM
The family of charity fundraiser Jane Tomlinson - backed by the NHS trust that treated her - are, at her request, to urge the Government to review guidelines concerning the availability of advanced trial drugs.
Mrs Tomlinson’s husband Mike is due to hold a joint news conference with Leeds Teaching Hospitals NHS Trust to discuss nationwide discrepancies which saw his wife refused a drug in the last few months of her life which was available elsewhere in the UK.
They will ask the Government to change its policies in order to erase such inconsistencies and prevent others from being refused treatment.
Mr Tomlinson said: "Jane Tomlinson has asked that following her death an ongoing serious national issue in the NHS be raised publicly.
“This is an issue which directly affected her care in the last few months of her life.”
Mrs Tomlinson, 43, lost her seven-year battle with cancer in September this year.
The mother-of-three defied doctors who gave her just months to live after her diagnosis in 2000 and raised more than £1.75 million through a series of gruelling endurance events.
The news conference will be held at the Ashley Wing of St James’ University Hospital.
Leeds Teaching Hospitals NHS Trust will be represented by Dr Phil Ayres, the deputy medical director.

Was it not Herceptin?
In any event SCANDALOUS - what a wonderful woman!

Hi Blondie,

Just ran across this when I logged on, so just visiting here.

It could have been tykerb, since she had the right kind of cancer.

I am glad to see that the local NHS trust seems to be cooperating with her family to resolve this issue. They are building a big cancer hospital in Leeds, which I think will be the biggest in Europe, and my oncologist at least seems to be completely overwhelmed by the reorganisation of the service.

At the same time, I wonder what the issue really was. Has the European Union (EMEA) licenced tykerb? I looked on the EMEA website and couldn’t find it even though Glaxo submitted the application nearly a year ago and the FDA approved it early this year. As long as a drug has a licence already, the legal risks to the trust are relatively low in providing it. Britain also seems to have a drug licencing group, but I am not sure what they do. Seems like keeping a dog and barking yourself! Maybe those people could be transferred to doing NICE approvals.

NICE has received criticism over the vagueness of its schedule for many drugs, including tykerb: publications.parliament.uk/pa/cm200607/cmhansrd/cm070710/text/70710w0019.htm
but it doesn’t act until after things have been licenced.

NICE approval; however, is not entirely necessary and I have met patients in Leeds who have had drugs on a named patient basis, including at least one drug that I don’t think was licenced for anything, although I think that it might require alot of work on the part of the oncologists to get drugs under such circumstances. Other factors may be at work: due to the reorganisation the oncologists probably had their minds on other things and the finances of the Leeds Trust are pretty dire right now.

Is Tykerb available in Scotland or elsewhere in England? Are they arguing that there should be more uniform standards across the different nations of the UK?

On average, tykerb combined with xeloda provides a few months of extra life, I think about nine, which I am sure Jane would have used amazingly well. It is discouraging to think that someone who was so extraordinarily worthy (not only a NHS radiographer and mother of a young child, but also an amazing fundraiser) couldn’t in the end get something that might have bought her a bit of time. I am sure that she would have used that time extremely well.

I was told that tykerb would be licensed this July but then they had trouble collating the evidence so now it will be looked at in november. I was also told that NICE would be looking at approval issues shortly after this date as it does not want the same situation as the herceptin debacle.
It is diaboloical that people are being refused drugs and it seems so dependent on your onc and PCT as to whether they will refer you to a different hospital for trials.
Hope in the future, theses issus around trials and refusal of treatment will be sorted but I think it will be after my lifetime.
Kate

Just saw Jane’s husband interviewed on the ITV lunchtime news; he repeated that Jane was denied advanced trial drugs locally in Leeds, but that she was invited to access this (or some other) treatment in Nottingham. He pointed out that travelling to Nottingham was just too difficult for Jane in her final months, but that she didn’t want to “make a fuss” or get “treated any differently” to other people in her position, so she didn’t raise the issue while she was alive. He didn’t mention which trial, but I agree it might have been Tykerb or Tykerb + Xeloda.

ChristineMH. you’re right that some treatments are available before EMEA or NICE approval; I was a “named patient” at Christie’s for Bondronat (oral ibandronic acid - a bisphosphonate for bone mets) at least a year before it was licensed in the UK.

Altogether an indictment of the post-code lottery, and all the more startling that it happened to a woman who was internationally known and respected for her BC fund-raising initiatives.

Marilyn xx

On the bbc website, it does say it was laptinab/tykerb that Leeds refused to give Jane.
I know my hospital wanted to do the expanded access trial for this but Smith.Kline glaxo refused to pay for all the extra scans and tests they wanted in return for the trial so that it why so few hospitals are taking part.
it is so wrong - I know a drugs company needs to make a profit but this drug does seem to extend women’s lives and they are being tight fisted in not contrbuting to the extra scans/ blood tests needed to make the research accurate.
In some ways, they are almost shooting themselves in the foot - if they don’t get the numbers cos they won’t pay the participating hospitals for the extra tests required how can they prove this drug is effective?
Kate

Just found this item in todays Independent.

GSK to rush out breast cancer treatment after trials success

news.independent.co.uk/business/news/article624244.ece

If you look on Cancerbacup, tykerb trials are taking place at about 24 hospitals around the country.

Jenny
x

Sorry, details are on www.cancerhelp.org.uk.

J.

According to my husband, the problem was that she couldn’t get the drugs locally, so she had to travel to Nottingham and that was a tremendous burden when she was so poorly.