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Old 04-23-2014, 10:04 AM   #1
sarah
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cancer drug turned down by NHS for cost

Personally I live in France but I remember the UK limited Herceptin use and here again more issues - it's shameful and last time we all wrote a lot of letters and got reporters active on the issue and Herceptin became more available. Perhaps we need to do this again.


http://www.theguardian.com/society/2...-use-high-cost

Breast cancer drug turned down for NHS use due to high cost

Decision on Herceptin-style drug which costs £90,000 but can prolong lives by nearly six months heavily criticised

Case study: 'Without it, I wouldn't be here'


A new drug for breast cancer which extends women's lives by almost six months is to be blocked from routine NHS access under draft guidance issued by a health watchdog. Photograph: Rui Vieira/PA

A Herceptin-style drug that can offer some women with advanced breast cancer nearly six months of extra life has been turned down for use in the NHS because of its high cost.
In draft guidance now open to consultation, the National Institute for Health and Care Excellence (Nice) blames the manufacturers, Roche, who are asking for more than £90,000 per patient, which is far more than any comparable treatment.
But the decision was criticised by Roche and some breast cancer charities, which say the drug is needed and that Nice has turned down too many breast cancer drugs already.
The drug, called Kadcyla (generic name trastuzumab emtansine), is already being paid for through the dedicated Cancer Drugs Fund set up by the government. A decision was made to fund it so that women with advanced breast cancer could receive it immediately it was available, without waiting for Nice's assessment.
But the Nice verdict raises questions about the future of such expensive cancer drugs once the fund ceases to exist at the end of March 2016. At that point, a new pricing scheme for the NHS is intended to be in place, but Nice will still assess whether a drug is worth the price the manufacturer wants for it.
Kadcyla is a new kind of medicine, according to Roche, combining Herceptin (trastuzumab) with a chemotherapy agent. It is designed for women with HER2+ cancer which has spread to other parts of the body and is inoperable.
It is not a cure, but in trials it extended life by a median of 5.8 months, compared with the current combination of lapatinib plus capecitabine.
Nice says the drug does not work well enough to justify the price tag and called on Roche to rethink during the consultation period.
"We had hoped that Roche would have recognised the challenge the NHS faces in managing the adoption of expensive new treatments by reducing the cost of Kadcyla to the NHS," said Nice chief executive Sir Andrew Dillon.
"This drug is already being funded through the special Cancer Drugs Fund. Our job is to recommend whether it should transfer into the NHS budget. We are very aware of the importance that people place on life-extending cancer drugs and a decision not to recommend a cancer treatment for routine NHS funding is never taken lightly.
"We apply as much flexibility as we can in approving new treatments, but the reality is that given its price and what it offers to patients, it will displace more health benefit which the NHS could achieve in other ways, than it will offer to patients with breast cancer."
The cost of Kadcyla is tens of thousands of pounds more than existing second-line treatments for this cancer, said Nice.
Professor Paul Ellis, a consultant oncologist at King's College, London, who worked on the drug trials, said in a statement issued by Roche that it "represents a significant advance in HER2-positive breast cancer, so for Nice to issue negative preliminary guidance is a huge blow.
"The drug tackles the disease in a different way to any other breast cancer medicine and provides women with valuable extra time with their families and loved ones – time that you cannot put a price on. Not only this, Kadcyla is also much better tolerated by women than current standard treatment options, causing much less in the way of traditional chemotherapy associated side effects. As such, the quality of life of women taking Kadcyla is significantly improved.The good news is that patients in England will still be able to access this treatment through the Cancer Drugs Fund, but we are keen to find a more permanent way to effectively assess the value of such drugs to ensure those who need them most can benefit from them."
Jayson Dallas, general manager of Roche Products Limited, said the company was "extremely disappointed that Nice has failed to safeguard the interests of patients with this advanced stage of aggressive disease".
Emma Pennery, clinical director at Breast Cancer Care, said: "It's extremely disappointing news for those living with advanced breast cancer and their families that yet another treatment has not been recommended by Nice."
Another patient group, Breakthrough Breast Cancer said Kadcyla was a very impressive drug but called for changes to the cost of drugs as well as the appraisal process. "We are now looking to the Department of Health and the pharmaceutical industry to find a way to work together to bring the cost of expensive drugs down and put a sustainable system in place by which new treatments can be made available on the NHS on a routine basis," said senior policy manager, Dr Caitlin Palframan.
About 1,000 women a month die of advanced breast cancer, although not all of them have the HER2+ variety which the drug targets.
A spokesperson for NHS England said: "The Cancer Drugs Fund (CDF) provides an additional £200m each year to enable patients to access drugs that are not routinely funded by the NHS. A number of the drugs available to patients through the CDF have previously been appraised by Nice and are not recommended for routine use. It was for this purpose that the CDF was established.
"A negative Nice appraisal on trastuzumab emtansine will not affect the availability of this drug via the Cancer Drugs Fund."
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Old 04-23-2014, 11:12 AM   #2
suzan w
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Re: cancer drug turned down by NHS for cost

I absolutely abhor how insurance companies can put a price on a human life. This is just so wrong on all levels.
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age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 04-23-2014, 12:23 PM   #3
Lani
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Re: cancer drug turned down by NHS for cost

NICE is not an insurance company.

It is a committee set up by the government in the UK to do cost/benefit analyses and vote/recommend for/against adoption of new and usually expensive drugs.

There is lots of blame to go around--governments (where there is government provided/funded healthcare), insurance companies, drug companies...
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Old 04-25-2014, 11:21 AM   #4
Ellie F
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Re: cancer drug turned down by NHS for cost

Hi
Checking in to just add how dismayed we are here in England that another cancer drug has been turned down by the bean counters! This happened with lapatinib and others! At present some of these 'new' drugs can be prescribed by a cancer drug fund set up by the current government. HOWEVER this is due to end in 2016 and raises lots of moral and ethical issues.
I would also like to stress how dismayed the breast oncologists are about this decision. They often spend hours writing responses about why drugs should be made available only to receive a negative reply and then have limited options to treat the patients in greatest need.
As Lani has intimated there is no easy answer to the funding issue BUT after 2016 there definitely needs to be provision in place so that the newer cancer drugs can still be made available!
Sorry for going on but time after time this same issues arises and the response is always the same
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Old 04-25-2014, 01:32 PM   #5
Lani
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Re: cancer drug turned down by NHS for cost

NO need to apologize. It is those who don't "peep up" verbally or in writing who have something to apologize for.

If noone says/writes anything, the bean counters, pharm company "pricers" government "slashers" and insurance company "deniers(sp?)" will continue to prevail.
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Old 04-26-2014, 09:49 AM   #6
sarah
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Re: cancer drug turned down by NHS for cost

you're absolutely right, Lani and luckily most of the time, Herceptin works and does the trick.
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Old 04-27-2014, 02:59 PM   #7
tricia keegan
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Re: cancer drug turned down by NHS for cost

Sarah, I remember the year I was dx this was freely available in Ireland and my own chemo nurses told me many nurses from the U.K arrived here to benefit from it. I met a lady on this site from Scotland who was stage iv, she arranged to sell her house and I set up an Onc her for her and some free medical care, the day after she arrived she had Herceptin

Glad to say she lived another two years, her story is posted here under "wishing to live to age 40", sad to see the U.K are still having an issue in paying for this drug all these years later
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 04-28-2014, 06:28 PM   #8
phil
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Re: cancer drug turned down by NHS for cost

this is not regular Herceptin - it is what I call - ' super -Herceptin ". it is sad that another Big Govt agency ( insert " FDA " here ) makes such an un-informed decision . they should talk with the top her2 researchers here - this drug will outperform Herceptin and probably Herceptin combined with old style more toxic chemos ( promising Marianne trial results coming out ). how much is alife worth ? how much does the UK spend on their military every yr. ? the US spends 500 BILLION every yr. and this cancer war will kill many,many more of our citizens. in Us mst research 4 are now from private co.'s - at farber 62 % of research $ up from 32 % 10 yrs ago, that's the reality - so you can fight for more govt, taxpayer 4 for research - while you do over the next few yrs or longer - more of us will die - all thse median stats are on acurve - approx. 20 - 30 % of the early t dm-1 pts had asuper response like my wifes . those survival stats will only go up - and once again the citizens of the UK will be left out -unless you Speak Up - there are paralleles with our fight fix gig govt first -get these trials and access fixed , then the co.'s to really give us " personalized " medicine - or else ! look at my wife 's testimony below -- 3 yrs on kadcyla , ned, , and she is not unique ! join our fight for our Sateg IV Rights at "our her2cancer struggle on fb. off my page, Philip mccartin. http://youtu.be/AkQOLGpXf98
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