‘Our lives will be shorter because NHS denied cancer drug – it could be you next,’ say brave campaigning women

[[{“value”:”

THREE women with incurable breast cancer say their lives would be otherwise longer had the NHS approved a breast cancer drug.

They have urged people to sign a petition ran by leading charity Breast Cancer Now, warning ‘this could be you, your mother, or wife’.

SuppliedKathryn Hulland, 45, from Devon, could have more time with her daughter, Grace, six, if Enhertu had been approved by Nice[/caption]

SuppliedAlison Jones, aged 60 from Worthing, says: “This disease can attack anyone. You, your Mum, your daughter, your friend, and you or they might need this drug one day.”[/caption]

Enhertu is the first licensed targeted treatment for patients with HER2-low breast cancer that cannot be removed surgically or has spread to other parts of the body — also known as metastatic breast cancer.

It is already given to women in England with HER2-positive secondary breast cancer whose treatment options have run out.

But the drug was deemed too expensive by the National Institute for Health and Care Excellence (Nice) to treat HER2-low secondary breast cancer in England – around 1,000 women per year, according to Breast Cancer Now.

The decision has shocked the charity, AstraZeneca, the manufacturer of the drug with Daiichi Sankyo, and women like Kathryn Hulland, 45.

Kathryn, from Devon, told Sun Health: “Hearing Enhertu was rejected for use on the NHS in England has left me devastated and confused, though that doesn’t really express the emotion enough. 

“I can’t comprehend how a drug available in Scotland which is extending lives there is unattainable in England and Wales.”

In December the Scottish Medicines Consortium approved Enhertu for use in Scotland. Wales and Northern Ireland are expected to follow the decision of England.

Kathryn said: “It makes me feel like my life has a price on it, that it isn’t worth saving, that it’s ok for my six-year-old daughter Grace to lose her mum earlier than might otherwise be the case.

“Enhertu could mean more time with my daughter, it might give me an extra month, year, maybe more. 

“Unless I have it, I don’t know, but it gives me hope. Even an extra month with my daughter is priceless for my family, it hurts that the powers that be think otherwise.”

Breast Cancer Now has launched the Enhertu Emergency campaign, which already has 163,000 signatures. 

Baroness Delyth Morgan, chief executive at the charity, said: “The devastating rejection of Enhertu for use on the NHS in England has created a truly heartbreaking postcode lottery of access to a life-extending treatment for women with HER2-low incurable secondary breast cancer.

“While women in Scotland have access to Enhertu, the tragic reality is that for thousands of women in the rest of the UK this lifeline remains out of reach and they’re cruelly being denied the chance of precious extra time to live and create memories with family and friends.”

She said “lives will be cut short” unless Nice, NHS and drug manufacturers strike a deal.

She added: “All women living with incurable secondary breast cancer in the UK deserve the hope of more time to live, no matter where they live. Help us make this a reality.”

‘I don’t want to envisage not being with my daughter’

Kathryn was diagnosed with HER2-low secondary breast cancer in January 2023 after noticing a lump on her clavicle.

The GP confirmed there was cancer in her left lung and possibly tummy area, after Kathryn had been diagnosed with primary breast cancer in January 2020. 

She said: “My cancer has extremely limited treatment options, it is called aggressive mainly because there aren’t many options in treating it, so any possible new treatment gives me hope, and hope is everything.

“Hope of seeing my daughter into Year 3, hope of seeing her into high school, hope of being there for her when she needs me most. 

“As I type this the tears well because I don’t want to envisage not being there for her.”

Kathryn’s current treatment is nab paclitaxel chemotherapy, and Enhertu could be a future treatment option for her. 

SuppliedKathryn was diagnosed with secondary breast cancer in January 2023[/caption]

Kathryn says the breast cancer drug rejection has brought the cancer community “sorrow”Supplied

She said: “I am ‘lucky’ as I am a year in and still on my first line of treatment. I still have hope that with the help of charities like Breast Cancer Now this decision may be overturned. 

“However, there are far too many people who are on their last line or treatment, or whose last line has just failed and Enhertu was going to be their next line. My heart is breaking for them too. 

“I can’t begin to express the sorrow and heartbreak this news has brought to the cancer community and those that need it NOW.”

Clinical trials have proven the drug can halt progression of HER2-low for an additional five months, on average, compared with chemotherapy, and give an additional six months of survival.

‘It’s difficult to put into words’

Tracy Pratt, 52, from Tydd St Mary, Lincolnshire, could also benefit from Enhertu in the future.

She was diagnosed with HER2-low secondary breast cancer in November 2022 after experiencing upper back pain.

The reality is that the decision is likely to affect you or someone you love in the future.

Tracy Pratt

Tracy, who has been a nurse for the NHS for over 30 years, said: “My first reaction was shock as I was convinced that NICE would approve this as the evidence is overwhelming. 

“I quickly went through a wide range of emotions – disbelief, sadness, anger, disappointment and I cried. 

“I felt completely let down and lost, sad for me, my family, my friends and everyone else in the secondary breast cancer community this decision affects.”

SuppliedTracy Pratt, 52, from Tydd St Mary, Lincolnshire, says Enhertu would give her hope[/caption]

Loose Women star Nadia Sawalha joins fight

“WE won’t give up until everyone who needs access to this drug has it,” vows Nadia Sawalha after taking her fight for a “life-extending” cancer drug to the heart of Westminster.

The Loose Women star, 59, has joined forces with her close friend Hannah Gardner, 37, a mum who has incurable breast cancer, after learning Enhertu has been blocked for use on the NHS in England.

Hitting out at the postcode lottery, Nadia told Sun Health: “While Nice is still thinking, cancer cells are multiplying and women are dying.

“This health inequality in England is devastating.

“I’d say to Nice, ‘If this was your daughter, how would you feel when you say this isn’t worth the money for the extra time?’.”

Hannah, a former clinical trial manager from Twickenham, South West London, who is married to firefighter Peter, 37, has been told by her oncologist that the drug is now her best remaining option.

Hannah said: “The thought of leaving my daughter [Lilah Rae, three] keeps me awake at night.

“It also keeps me going with this campaign because she is not being robbed of her mummy for a second longer than she needs to.

“It’s exhausting to have to fight like this but the utter frustration is driving me at the moment.”

On March 18, Hannah held a private meeting with Commons leader Penny Mordaunt and Tory MP Craig Tracey, Chair Of The All-Party Parliamentary Group on Breast Cancer.

Tracy’s current treatment is Everolimus and Exemestane.

She added: “I find it difficult to put into words what having access to Enhertu would mean to me. 

“It would give me more quality time to enjoy my life with my family and friends. More time to live with secondary breast cancer. It would give me more time to travel and continue to work as a nurse. 

“Ultimately it would give me hope. 

“This decision does not just affect us living with secondary breast cancer now but also those that will develop it in the future.

“The reality is that the decision is likely to affect you or someone you love in the future.”

‘I never thought this would be me’

Alison Jones, aged 60 from Worthing, West Sussex, has begged people to sign the petition for the sake of someone they love.

She says: “Just take 30 seconds of your time to sign this petition for me, my daughter, my partner, all my loved ones, and maybe you and yours.”

SuppliedAlison with her daughter and partner[/caption]

Alison was diagnosed with HER2-low secondary breast cancer on the 4th January 2022, just nine weeks after a primary diagnosis in October 2021. 

She is a mum to a teenage daughter, about to go to university. 

Alison said: “I never in a million years thought I would get cancer, certainly never stage 4 incurable cancer. 

“This disease can attack anyone. You, your Mum, your daughter, your friend, and you or they might need this drug one day.”

Alison’s current treatment is ribociclib, Letrozole and monthly denosumab injections however Enhertu could be a future treatment option for her.

She said: “When I heard that Enhertu had been rejected by Nice my first thought was disbelief – it’s used for other types of cancer so why not mine? 

“I couldn’t understand the reasoning. 

“Secondly I felt fear, fear that my life would be shorter because of this decision, I felt helpless. 

“Then I thought I must try to add my help to another campaign to reverse this decision – my life literally depends on it. 

“Enhertu is available in numerous other countries, including Scotland. I’ve heard of women being on this drug for over two years. 

“To me, that means two more years of life with my teenage daughter, my partner and my loved ones. Why am I being denied this when others have access to it?”

Breast cancer is the most common form of the disease in women in Britain, and one in seven will develop it at some stage in their life.

There are more than 56,000 new cases every year and around 12,000 deaths.

Around a third of patients are diagnosed with incurable secondary breast cancer.

Treatments such as Enhertu for secondary breast cancers aim to slow the growth of tumours, with many women living for years more.

But demand for such treatments is expected to rise as doctors help more women to survive their original breast cancer but need help again when it returns.

How to check your breasts

It is important to regularly check your breasts for any changes. Breast tissue reaches all the way up to your collarbone and across to your armpit, so it’s vital to check these areas too.

If you feel or see any changes in your breast you should always consult your GP.

Charity CoppaFeel! recommends checking your breasts monthly, so you can pick up on any changes quickly.

Breasts do change naturally as part of your monthly menstrual cycle, so you should get to know your breasts, how they feel and what changes they usually go through to know if anything is out of the ordinary.

Five-step check

There is a five-step self exam you can do at home to check for any changes.

Step one: Begin by looking in a mirror, facing it with your arms on your hips and your shoulders straight. You should be looking for any dimpling, puckering, bulging skin, redness, soreness, a rash or changes in the nipple.

Step two: Still looking in the mirror, raise both arms above your head and check for the same changes.

Step three: With your arms still above your head, check for any fluid coming from the nipples. This can include milky, yellow or watery fluid, or blood.

Step four: While lying down use your opposite hand to check each breast. Using a few fingers, keeping them flat and together, go in a small circular motion around your breasts. Make sure you feel the entire breast by going top to bottom in these small circles. It helps to develop a system or pattern to make sure every inch is covered. Use light pressure for the skin and tissue just beneath, medium pressure for the tissue in the middle of your breasts, and firm pressure to feel the tissue at the back, feeling down to your ribcage.

Step five: Feel your breasts while either standing or sitting, using the same small circular motions.

“}]]   

Advertisements