Does the government listen to the oncologists? My oncologist told me last summer that he and some other oncologists had been trying to get the government to move both on herceptin and taxanes, so I do wonder whether the government has been listening to the oncologists when they prioritised one over the other. After all, the oncologists are the experts and know the inside scoop about what treatments are working really well in the trials.
Any decision should ideally discuss not only herceptin, but also the chemotherapy drugs it is known to work with synergistically (carboplatin, vinorelbine, taxotere), since it is not clear that (taxotere+herceptin)- FEC will end up being the ultimate answer. Both (herceptin+carboplatin+taxotere)- AC and vinorelbine+taxotere (with neulasta to control neutropenia) have done astoundingly well in trials.
I know what you mean about the dangers that herceptin will be treated as a cure. My sister-in-law even suggested over Christmas that I consider adopting a child (the younger brother of the four that she had adopted). She was astonished when I replied that I was too big a health risk. Basically she figured I would be o.k. because I was on herceptin and \"there are new breakthroughs coming all the time.\" And this from someone who used to work for the Scottish equivalent of NICE!
Patricia Hewett I don\'t think it is possible to look at HER2+ breast cancer (or any particular sub set of BC for that matter) and pronounce specifically on one drug in isolation when the situation is complex - excluding the SABCS data from Finland at this point (although I do think this is a way forward that whilst not necessarily cheap is a better way forward for both NHS and recipients). If , the NHS does decide that it wants to spend Ã‚Â£20,000 - Ã‚Â£30,000 on a years Herceptin - to give the recipient the best possible chance of non-recurrence / cure(?) All other factors need to be sorted - surely we don\'t want to potentially undo all the benefit gained with the herceptin by not giving the chemo likely to be the most effective. NICE doesn\'t plan to report on the Taxanes until Feb 07 - The issue of antioestogen therapy needs addressing - I know being oestrogen positive is less common if you are also HER2+ve but if you are Tamoxifen isn\'t the best idea - may actually do more harm than good, again another wait for NICE, interesting to see how my PCT deal with this one when I\'ve had my oophorectomy - they currently will not fund herceptin. The more general BC guidelines not yet have a publication date (the Scottish \"SIGN\" equivalent) having just been published.
It worries me that the media have jumped on the Herceptin \"wonder drug\" theme, such that when you have \"got\" the drug thats it. Being HER2+++ I\'m very grateful that the studies showed just what they did and that i\'ve had access to the drug, but we need a level playing field for this - If intervention was to be made it should have been as a definate set of guidelines - who should receive it - weighing up all of the risks/benefits. AND I want the whole treatment package optimised.
The future for Herceptin use, needs to be handled in two ways - we need a plan now for those of us in the system already - where the 1 year \"tail\" is the way to go. Also necessary is the management issues of those yet to be diagnosed and unfortunately the way the trends are going, this number is going to bigger rather than smaller (Back to the Finnish study here)
Keeping us as early stage patients hopefully allows us to work, pay taxes, stops us requiring further treamtent s - seems to me that everyone wins.
I have wondered that, too Hi Daphne and everyone,
Yes, I can\'t understand Patricia Hewitt\'s behaviour, either. I think that she was right to insist that everyone be tested for her2 when diagnosed. For years we\'ve been told that this wouldn\'t affect treatment, but there are some women who have been switched off CMF because of this knowledge, since CMF is widely considered less effective against HER2+++ breast cancer than CMF.
It has become a bit too much herceptin for everyone, though. There are some uncertainties about herceptin and I would have been happier if she had established the principle of intervening only in high-riskcases.
Regional Lottery Here we go again with Femara - licensed for use in Scotland for post-menopausal women who\'ve finished Tamoxifen, but not licensed in England and Wales so we\'ll have to wait until Autumn 2006 (I think) for NICE to review Aromatase inhibitors.
Why are NICE and the Scottish equivalent duplicating effort? If the Scots have evaluated Femara, why can\'t NICE piggyback on that and vice versa if NICE have evaluated drugs that the Scots haven\'t (though NICE never seem to be ahead of the game do they?)
Well it keeps lots of people in jobs.
Back to Patricia Hewitt. I think she dug herself a big hole over Herceptin and I\'m mystified as to why she did so.
Hewit and Herceptin Well expressed, Jane. The media are great misleaders and the public is generally gullible.
Patricia Hewitt\'s intervention was extraordinary and wrong I think it is quite inappropriate for a govenrment minister to intervene in decisions affecting the allocation of drugs. Her decision raised hopes and expectaions which could not possibly be met without a clear strategy for implemetation both of her2 testing and use of herceptin.
Breakthrough are right to call for a review of processes and procedures to introduce new guidelines for dealing with new drugs as they come on board. This is an issue not only for breast cancer, but for all cancers and for all other diseaeses. I know that many consultants in other fields of medicine feel alarmed by this unthought out political intervention which could even have the unintended impact of prejudicing the lives of more patients than it helps (if PCTs, strapped for cash switch prioirties to breast cancer.)
I think the case of herceptin and breast cancer is fascinating as a case study in media pressure, populist campaigning, and attitudes towards illness in the west. Images of young mothers fighting for a \'cure\' for a cancer perceived as particularly devastating to \'femininity\' makes good copy in the press. Breast cancer has been elevated to the status of women\'s biggest fear. No doubt Patricia Hewitt has friends, aunties, a granny or two with breast cancer; maybe she\'s worrying about her next mammogram.
I\'d have been in there screaming for herceptin if it was drug which would help me and I have the greatest respect for those of you who have done this. Self interest is just right for the self interested but I expect more of government.
Today the press has picked up the news from San Antonio of the success of femara compared with tamoxifen. In smaller print in conference reports there\'s a bit of news that dense dose chemo might help some triple negative cancers. The issues raised by the allocation of herceptin are not unique to that drug.
Allocation of scarce drugs, and access to the best treatments should not be market driven but we live in a market economy and a consumer economy where even in medical care the \'consumer is king\'. In terms of equity and fairness I think it is tragic if those who can shout loudest (of look most worthy?) can get treatments and attention denied to those more vulerable, less media savvy.
Letter I\'ve written to Patricia Hewitt (copying the Chief Execs of my local PCTs) as they seem to think she only requires them to consider it for \"exceptional cases\" (whatever they are - I found this on one of their websites) That\'s certainly not the impression I got at the Westminster Fly-In when she announced that PCTs should fund Herceptin for patients with primary breast cancer who have a clear clinical need and that they should not refuse solely on grounds of cost.
Hi Patricia Hewitt\'s intervention was a nice but hollow gesture. Unless she is going to introduce some kind of legislation to ensure that PCTs fund new, more expensive treatments, patients are still going to have to fight.
Nice bit of publicity for your caring image, Patricia - now let\'s see some action!
The solution to all the problems? The big problem is that the industry funded a series of trials that NO country can actually afford to implement (according to a Belgian health economist) despite their demonstrated benefits. As such, the drugs industry has put the government in a very difficult position.
There is probably a more efficient and safer use of herceptin. Even though herceptin-based combinations given neoadjuvantly have produced some remarkable levels of complete and partial response in her2+++ patients, the Genentech-funded trials have all had that long one-year tail of herceptin. Interestingly, a Finnish study that did not receive Genentech/Roche funding recently found that when herceptin was given just with three rounds of taxotere for nine weeks and then followed with three rounds of FEC, the rate of recurrence was halved over 3*taxotere- 3*FEC alone, not that much different from the finding in a large Genentech-funded trial that 4*AC- 4*(taxotere+herceptin)- rest of one year herceptin halved the recurrence rate over the same regime without herceptin. The three year disease-free survival rate was nearly 90% on the Finnish trial , even though all of the women had to have at least a 25% risk of recurrence within five years to participate. There was no cardiotoxicity problem in the Finnish trial (FinHer) versus an unacceptably high 17% of the women on the other trial having greater than a 10% decline in heart function for at least 18 months. I figure that the cost of the Finnish treatment is probably about 1/3 that of the Genentech-funded study and would be more convenient for patients. I think that herceptin only combined with chemo is probably the only viable method of an extremely effective treatment to all patients who would benefit. Unfortunately, the FinHer presentation from the San Antonio Breast Cancer Symposium has not received much attention and won\'t be available as a webcast until February.
So, the problems with herceptin may soon be surmountable. The cheaper herceptin-based chemo is so effective it would probably save the NHS money on palliative care within a few years (but not sooner, which will cause problems). I know that Genentech has said that the Finnish trial is too small, but the results on recurrence are statistically significant and the results on overall survival close to statistical significance (much closer than the trial that gave one year of herceptin following treatment). Ideally, the treatment with a tail and without would be tested against each other, but the risks on both sides are large: Genentech can\'t afford to fund a trial it might lose on and the EU can\'t afford to demonstrate the benefits of a treatment it can\'t afford to implement (and has just put in place legislation that makes multi-country trials excessively difficult anyway).
I do worry though that the NHS process is so bureaucratic that it can\'t adjust to rapid changes in treatment. When the NHS writes its guidelines next November, will they still be best practice after the San Antonio Breast Cancer Symposium convenes next December?
Of course, Daphne, you are right about the government not doing enough. One area of urgent need is the role of vitamin D deficiency, which is widespread in Britain, in cancer (or maybe these dark days are just getting to me).
Merry Christmas everyone. See you in the new year.
Ciao for 2005.
some thoughts.. Hi Daphne, tricky subject but just some rambling thoughts I have although being Her2- I can\'t say I\'m really up to speed on Herceptin. I do remember there was an article in The Lancet which mentioned some doctor\'s reluctance to prescribe Herceptin freely, I don\'t think the reluctance was down to costs, seem to remember they thought more investigation was needed in the early and perhaps prolonged use of the drug.
I do think the media gloss over so much and not many articles have really touched on the risks to the heart.
It\'s also a sad state of affairs that contrary to popular belief so many women with secondaries are either never tested or only offered Herceptin after further progression or in the case of a friend and fellow forum user, shortly before her death.
I accept the NHS doesn\'t have unlimited funds, but understand the frustration and heartache this can cause. I\'m currently in remission and have very few bone mets yet won\'t get a superior bisphosphonate infusion (keeps bones strong and reduces risk of fracture) until if or when I have further progression.
Best Wishes. xx
Lets Discuss Herceptin & Patricia Hewitt\'s intervention In the let\'s discuss thread, JaneRA posed the question:
\"Great as Herceptin is, was Patricia\'s Hewitt\'s intervention really the right one?\"
I thought I\'d start a new thread on this topic only as it makes things a bit easier to follow.
If PH had not intervened, many women with primary breast cancer who are now getting Herceptin would not be getting it. So her intervention is probably improving breast cancer survival for many women which is a good thing.
However, we are back to postcode lottery and, despite PH stating that no PCT should refuse to fund Herceptin for Primary Breast Cancer on grounds of cost alone, many PCTs are still refusing to fund. Since it is unlikely that doctors are recommending people for Herceptin without the clinical benefits being clear cut (why would they stick their necks out to recommend an unlicensed drug unless they were sure a patient would benefit?), I presume that some PCTs are ignoring PH\'s guidelines.
I think it was wrong of her to make this statement without giving a commitment to ensure that she would take action against PCTs who ignore it. When questioned about this at Breakthrough\'s Westminster Fly-In, she reminded us of the extra money the Government has allocated to the NHS and stated that finance should not be an issue for PCTs.
So why are so many of them bleating that they have no money and would have to take money away from essential services to pay for Herceptin? It\'s like a dam waiting to burst because when it does get licensed, what excuses will they make then?
Herceptin is only the start. In future, new cancer drugs will be developed and patients will have the same sort of struggle to get the drugs. The Government doesn\'t seem to give a stuff about preventing cancer (or other diseases for that matter), so they\'d better get used to a lot of ill people campaigning hard for drugs to keep them alive.
Breakthrough Breast Cancer has stated that the recent example of Herceptin has demonstrated that future breakthrough treatments need to be handled through a proper process rather than intervention from MPs and they will be sending out a survey about NICE to Campaign and Advocacy Network Members.
A decent, speedy, process to get new drugs licensed is good, but it doesn\'t deal with the problem of where the money is going to come from to pay for them.
I think that Herceptin should be available to every woman with primary breast cancer who will definitely benefit from it, but that doesn\'t stop me from resenting having my taxes poured into the ever-widening maw of a Government which thinks that a good health service is one that focuses entirely on treatment and does nothing about prevention. Remember, this is the Government that ignores the role of alcohol and smoking in cancer and other diseases and presides over a culture of binge drinking and hasn\'t got the guts to go for an outright ban on smoking in public places.