Her2+++ The Her2 Crew - this will be a thread dedicated to pestering NICE and the NHS to fund our drugs

Erik Nordkamp from Pfizer just raised the chronic v 'end of life' issue

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Me too - Her2+

Katie

6th March 2017

All Party Parliamentary Group Breast Cancer - committee room 16

roughly 15 women affected by Her+ secondary or metastatic breast cancer attended

4 MPS, head of NHS, head of CDF, GM Roche, MD Pfizer and the top man from NICE,  plus assorted extras

summary

We're hoping that NICE has a review of its criteria for approving new cancer drugs before it makes its decision on Kadcyla.

Pfizer raised the issue, that we've been suggesting for quite some time, that the new generation of cancer drugs are becoming more like treatments for chronic illnesses. Therefore cannot be cost compared to a chemotherapy that extended your life for a few months on a downward trajectory.

Roche and Pfizer do seem to be making a good case for this and we requested reassurances that these would be taken seriously and with the assembled women as testimony to the effectiveness.  Both companies are limited in their claims by common sense in that not everyone responds to the drugs in the same way and long term disease free survival with minimal side effects cannot be guaranteed for everyone.

The key point is 'end of life' care versus long term chronic illness management.

Further research is needed into who will review NICE and their current guidelines????? 

Will we be able to contribute to the pharmaceutical companies arguments and case notes??????

We know that no new breast cancer drugs have been approved in the last 7 years but what about other monoclonal antibody therapies for other cancers???

Is there any bias in which drugs are approved or declined????

Could it be said that NICE are avoiding inflicting long term cancer drug dependence on the NHS????????

Comparisons were drawn between the UK, or more specifically NHS England, and the rest of the world.

NB. For those in Wales who were astonished to find that services in Wales are considerably lacking compared to England can be reassured to know that the nice man from Roche is from Wales and knows this is an issue.

In the UK we cap a price on someones life and if the drugs are above that it's considered too expensive.  I have the business card of the member of the public affairs team and will try and get more background on the statement that was made.

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I don't think anyone left the room convinced that NICE were going to budge and it does seem now that it is NICE that needs to move.

I need to properly formulate the benefits of having private healthcare over relying on the NHS.

My  feeling so far is that if I have private care I can have access to any drug that my oncologist considers appropriate, the previously approved Tykerb which is a Novartis drug, prescribed as lapatinib and capecitabine and when that stopped working moving on to trastuzumab and pertuzumab, Herceptin and Perjeta,   and then when they stopped working moving on to Kadcyla. With 3 years on each of those you're looking at 9 years. Plus with the successful formulas maybe in five years there'll be another clever drug and another clever drug.

On the NHS currently the only option is trastuzumab which is now off patent.  Paired with Perjeta if it gets NICE approval for metastatic Her2+ breast cancer. giving you perhaps 3 to 4 years.

It has just got approval for primary neoadjuvant treatments, and adjuvant ?.

But that is with NICE using this 'end of life' or life extending formula.

I need to double check this

Weird thing about today :  all the people who felt things were wrong spoke loudly and clearly.  The guy from the NHS and the guy from NICE mumbled into their notes. My daughter spotted it too . It was really obvious .

Perhaps I'll get Sir Andrew Dillon to do a live ask the expert session on here ....

to be cont.

Carolyn

xx

Hi Carolyn28 thanks for the info. Sounds like a really interesting day. I don't know whether you're planning to do more research/work on this but I can find the formal statements from the Pharmaceutical Benefits Committee here when they were considering the various drugs. They make difficult but interesting reading and I assume the pharmaceutical companies make the same basic arguments everywhere. Unfortunately some of the info re cost and the stats is redacted but it's still helpful. I did read in one of them a statement that seems to imply they consider metastatic BC to be a chronic disease now. Let me know.

Strikes me that all this bureaucratic b/s just increases the costs of the drugs.

As for private health insurance. Well I'm a fan but do make sure that they'll cover the cost of "experimental" or off NHS drugs and do they set a cap. That's a problem here and in the US (the small print lol). 

Is Dillon the head of NICE? That would be a coup if you could get him on here.

Best

The problem with private medical insurance here is that you can't get it if you're ill.  If you are forward thinking and get it before you get ill, then you are entitled to whatever the cover is.  

But in most cases, a BC diagnosis would mean that any cover would exclude any BC related treatment/drugs.  At least that's my understanding.  

And of course we know that the side effects of BC and treatment are many and various, so could be excluded.

Carolyn, I am in awe of you, you are amazing.  Well done, and keep going!

morning Helen

thank you, I'm not worthy, but I'll happily accept  :D

I have been told that if I have an AXA policy for 2 years and haven't had to have investigations or treatments then the BC will be covered if it comes back or metastasises.

I need to double check that obviously.

My onco has now sent a letter confirming 'sign off' of treatments other than ones requested by me for reassurance.

I still think the charities have a part to play.

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Carolyn

xx

Hello,

Not part of the gang but have been having a nose here - some bits are useful to all of us bc crew. Just interested in what you mentioned about the health insurance Carolyn. If you do find out any info, please let us know. (If so, any chance you could pop it on a main thread so I don't miss it). 

Also I agree with what you have said about the charities. Why fund lots of research for new drugs, only for NICE not to approve them on account of cost. (7 years!!!) There are so many cancer charities out there with big profiles. Don't know if it has just been since I have been diagnosed, but I am noticing adverts on tv, radio, internet all the time! Isn't there anything we can do to raise this issue with the charities and the general public? I am sure the majority of people donating are not aware of this.

Oh and I agree with mistymoley.

Gay xxx

Cutting off funding for research by the charities wouldn't solve the problem that NICE faces of having to justify the cost to the NHS of expensive new treatments. It's also worth rememembering that breast cancer, as one of the most prevalent cancers, gets more attention and funding. If you have pancreatic cancer for example, there are very few good drugs available, as is still the case for lung cancer. Research on these is desperately needed, as for the cancers with small numbers of patients, where there is little profit to be made by the drug companies.

Private insurance might seem a good idea but do we want a US style system in which the cost of treatments that insurers (if your insurance is sufficient) are prepared to pay itself pushes up the cost of the drugs? Further down the road the answer may be some kind of combination of individual insurance and tax- and state-funded care as in Australia but that's a big debate to come. Also getting the drug companies to strike deals on pricing, which is what NICE is trying to negotiate.

hi Susanne

I need to get you the notes from yesterday, it was an interesting debate

The rules NICE are evaluating to need to change, it seems pretty clear they are only looking at extending life for a few months and Pfizer did take them up on this.

I don't have time to explain now but I will ... chase me if I haven't updated this

The reason I say charities could do a bit more is because the Cancer Drugs Fund is being rejigged.

if you have 10 million in donations for research some of that could go to implementing the treatment .. AND researching how it works, that loop isn't being completed

it's just about getting the clever drugs into the system

NICE isn't about long term care it's about short term fixes, or that's how it seemed yesterday

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I need to go get ready the youngest has an interview this afternoon and I have to drive him there.

Carolyn

xx

Hi Carolyn,

It would be great to get a copy of the meeting  notes - thanks. You're right of course. Some of the new therapies have the potential to turn High risk cancers into chronic conditions, even for poor prognosis ones like mine. Several IBC ladies are doing very well with these, though Stage 4. It's not just about end of life and adding a few months. But until the 5 year evidence from trials is there NICE can keep saying that that long- term survival hasn't been proved.

It was my birthday yesterday and overnight I came down with a nasty stomach bug. Life's  so unfair sometimes!

Susanne xx