Amy Hills

GP living with MBC for 5 years. Still alive thanks to miracle drugs and the Royal Marsden

[METUPUK @METUPUKorg]

Please comment on the link below as they want to hear from the public #EnhertuLowNow

https://t.co/AsYYrJrmOE

[METUPUK @METUPUKorg]

METUPUK is dismayed by the NICE decision not to recommend the drug Enhertu (trastuzumab deruxtecan), for routine use on the NHS in England for #metastaticbreastcancer in HER2-low patients... Please see our statement via this link https://t.co/1nz2HVxH2G

#EnhertuLowNow

[Amy Hills @drames78]

@METUPUKorg A fast track procedure for breakthrough therapies needs to be implemented NICE. The FDA looked at HER2 low and Enhertu well over a year ago. If NICE had done the same it's likely a deal would have been struck on the price of this drug making it 'cost effectively' for the NHS.

[Amy Hills @drames78]

@METUPUKorg This is terrible news. I hope renegotiation on price will reverse this but we are 12-18 mths behind Europe, USA & now Canada & Australia. I am fortunate and have just started this drug through private insurance. The NHS and NICE are failing UK MBC patients with their tardiness.

[Amy Hills @drames78]

@HalifaxBank your app stopped working on my phone yesterday and is asking me to set up it up again with username, password and memorable information. Is this issue specific to me? I'm a bit suspicious.

[Amy Hills @drames78]

This study into the drug Trodelvy had participants in the UK. Like Enhertu it had great results. In the US the FDA have just approved Trodelvy for use in this patient population. In the UK NICE haven'teven set a date to look at it yet. @NICEComms @METUPUKorg

[Paolo Tarantino @PTarantinoMD]

Sacituzumab Govitecan is now approved by the FDA for HR+/HER2- MBC pts after ET and ≥2 lines of chemo, based on the sign OS benefit seen in #TROPiCS02. Congrats to all the investigators! @stolaney1 @hoperugo @JavierCortesMD @dradityabardia @jhaveri_komal
https://t.co/0PR9lVVjVi

[Amy Hills @drames78]

@madmeynell Very important. I'm in several support groups and when I talk about HER2 low most of the ladies don't know what I'm talking about. I only know I'm HER2 low because I'm a doctor and a trawled back through my histology to find I was 2+ ISH negative.

[CancerNetwork® @CancerNetwrk]

The European Commission approval for trastuzumab deruxtecan in HER2-low metastatic breast cancer is based on data from the phase 3 DESTINY-Breast04 trial. #bcsm | @EU_Commission @JavierCortesMD

https://t.co/lWTkwXU0rV

[Amy Hills @drames78]

@abcdiagnosis @METUPUKorg @Make2ndsCount I've sent her a DM incase I can help.

[Amy Hills @drames78]

@lisao87 @abcdiagnosis @madmeynell @bccww There is a contact name here. https://t.co/jjg8df6Xdk

[Amy Hills @drames78]

@lisao87 @abcdiagnosis @madmeynell @bccww It looks like Christie can access it through the Target trial which is still recruiting. Your oncologist should know https://t.co/PUg0DiWscc

[Madeleine Meynell #IAmThe31 @madmeynell]

Drop any comments below or DM if you wish to be anonymous. We are looking for comments for a submission to NICE about Enhertu for HER2-low on behalf of METUPUK

@metupuk
@abcdiagnosis
@bccww

[Madeleine Meynell #IAmThe31 @madmeynell]

A small number of UK patients have received Enhertu for HER2-low as part of a trial. We would love to hear from you if you have been on a trial.

We would also like to hear from you if you haven’t been on a trial but want to know more about HER2-low and Enhertu

[Amy Hills @drames78]

@lisao87 @abcdiagnosis @madmeynell @bccww I got it through private insurance but know ladies who have got it on the NHS. Christie should definitely know how to access it. Royal Marsden are doing genomic testing through the PlasmaMATCH trial. https://t.co/fEEpuLMVmM

[Madeleine Meynell #IAmThe31 @madmeynell]

Enhertu has been approved for pre-treated HER2-low metastatic (secondary) breast cancer in the EU and the USA.

The approval is based on the phase 3 DESTINY-Breast04 trial which showed Enhertu increased the length of time before cancer progressed and overall survival.

[Madeleine Meynell #IAmThe31 @madmeynell]

Thank you for raising awareness of metastatic breast cancer at PMQs. The biggest killer of women aged 30-64. It devastates families.

Research and removal of barriers to access innovative drugs and radiotherapy needed to prevent 31 women a day from dying in the UK.
@METUPUKorg

[Amy Hills @drames78]

@lisao87 @abcdiagnosis @madmeynell @bccww Agree with Jo. Push for something like Guardant360- you may have a targetable mutation. I do and now on a trial for a HER2 mutation at the Royal Marsden. (So getting a HER2 treatment even though I'm HER2 'negative')

[Amy Hills @drames78]

@abcdiagnosis @NICEComms @METUPUKorg @Make2ndsCount NICE aren't even looking at Enhertu for HER2 low until September- aiming for a decision in November. 9 months behind the EU and over a year behind the US. We've got to pressure NICE to look at a fast track process.

[Amy Hills @drames78]

@METUPUKorg @Debbie_abrahams @AndyBurnhamGM @cajardineMP @lwhlaura @RishiSunak Definitely need to highlight the huge delay with #enhertu available in EU and Canada now, in the US since last August. NICE aren't even looking at it until September. The cancer drug fund is lagging behind most developed countries now.

[Amy Hills @drames78]

@cajardineMP Does PM not understand what #MBC is? Early detection was not what the Q was about. Good example is #enhertu - lasted drug to be approved in US, EU and Canada for #her2low MBC. NICE & Scottish drug consortium haven't even looked at it yet.