Susan Price, a 34-year-old town planner from Cheshire, was first diagnosed with breast cancer in November 1998. After undergoing chemotherapy, surgery and radiotherapy, she was told the cancer had spread to her lymph node. Following an unsuccessful course of the hormone drug Tamoxifen she was told in May 2001 that she had secondary liver cancer. She struggled unsuccessfully to be prescribed Herceptin, the £20,000-a-year drug that can extend life by 10 months or more. She died in November.
Sue was first diagnosed with breast cancer in November 1998 and at that point she basically went through chemotherapy, then on to surgery, then on to radiotherapy because the intial pathology from the surgery showed that the cancer had got into her lymph node slightly.
At that time she was basically told that it wasn't a wonderful outlook for her because it looked like it had spread but there was no indication that it was in the rest of her body yet. So they then put her on hormone treatment which was the normal Tamoxifen and that was what she then took for the rest of the time.
Until about May last year her diagnosis was secondary liver cancer and it was evident the hormone treatment wasn't working. We then had a long chat with the consultant and a look at the various possible treatments that Sue could go on. At the time they also did the Herceptin test but that took a while to come back.
In the meantime they put Sue on a different hormone treatment because we had discussed it between the two of us and she was told it was terminal and there was nothing they could do about it. It was merely a matter of prolonging her life. We were told of Herceptin as one of the possible treatments and at the time Sue decided that she didn't want to go through chemotherapy - she didn't see the point of going through six months of really horrible treatment just to get another six months of life. She'd rather just have the quality of life rather than spend it all in a hospital.
So she tried a different hormone treatment and that then went on for a couple of months while the doctors were trying different things to see if they could slow down the growth of the cancer.
It was around mid August of last year that we found out that Sue was a likely candidate for Herceptin. There were potential side-effects such as heart problems, but we decided that Herceptin was the best route to go. However, we were then told that Sue couldn't get it on a trial basis as she had already had too many combinations of other drugs and that our consultants couldn't supply it anyway because the National Institute for Clinical Excellence (Nice) had not yet issued its guidelines.
Nice's decision on Herceptin was due to be made that month, but it was delayed and delayed. So we started fighting to get the policy changed so that GPs could prescribe it. We contacted cancer charities and the press to try and start a campaign. It soon became clear that Sue was not alone in this situation. Just at her hospital [Christie's in Manchester] there were another 10 patients in the same situation.
Ultimately, we decided that we weren't going to wait for Nice's decision and we were going to pay for it ourselves. It was no problem getting it as the drug was licenced: it was just a matter of having to wait for Nice's guidelines to come through if you wanted it on the NHS.
Then on the day Sue was meant to start her private treatment, the board at the hospital decided it was now going to authorise the drug. At the time, Christies, which is funded by multiple health authorities and is a big cancer centre, followed Nice's recommendations, but it changed its mind.
It was incredibly frustrating before this point because there were other places 30 miles up the road that were prescribing Herceptin. It all felt so arbitrary and annoying. We even later found out that it hadn't even been a budget issue for Christie's. It was just a policy issue.
If Nice are going to take 18 months to decide about a drug that was licenced in this country four years ago, how long are they going to take with the next drugs?
