May 29, 2024

Welsh Woman’s fight for life saving cancer treatment drug

Hopes have been shattered for hundreds of women with incurable triple negative secondary breast cancer, as the National Institute for Health and Care Excellence (NICE) has provisionally rejected Trodelvy* for routine use on the NHS in England and Wales, leaving patients with profound anxiety and uncertainty about their future treatment options.

Women living with this life-limiting disease already face the devastating reality of short prognoses and limited treatment options, but Trodelvy could offer certain patients hope of precious extra months spent with loved ones and doing what matters most to them.

With Trodelvy recommended for use on the NHS in Scotland* just last month, the news could see women in England and Wales left behind as they face the prospect of being denied access to the drug in the future unless this decision is reversed.

Louise, North Wales, needs access to Trodelvy. Diagnosed when pregnant, six weeks before her cancer diagnosis she was told by a radiologist at the breast care clinic that the large lump in her breast that had literally appeared over night was nothing to worry about and was just hormones relating to pregnancy:

 “I am 34 years old and live with my fiancé and beautiful 5 month old baby. I was diagnosed with triple negative breast cancer in August 2021 when I was 6 months pregnant.

 “I had a CT scan in late January/early February 2022 and unfortunately this scan showed spread to multiple bones which looked like they had been there all along as they’d been ‘treated’ by the chemotherapy. I had another CT scan at the end of March 2022 which then showed progression to my liver.

 “I am waiting to see what treatment I should start on. I’m still in absolute shock that I am living with secondary breast cancer  All I know right now is that I need to do absolutely everything I possibly can to fight to be here for as long as possible for my little baby boy. I am certain that at some point I am going to need access to Trodelvy to give me extra time with my baby which is why it’s so important NICE approves this treatment for use on the NHS”.

Breast Cancer Now’s tireless efforts to ensure all women had access to the treatment as soon as it was licensed, and ahead of the decision being reached around its routine use on the NHS, saw the charity launch its #TimeForTrodelvy campaign, and work closely with its patient advocates to successfully secure increased supply of Trodelvy through a pre-reimbursement access scheme run by pharmaceutical company, Gilead. In light of today’s news, the charity is now calling on Gilead to guarantee their pre-reimbursement access scheme will remain open to all new eligible patients until a final decision around routine access to Trodelvy on the NHS is made by NICE, at the second committee meeting next month.

With a public consultation closing at 5pm on Friday 29th April 2022, Breast Cancer Now is calling for the public to sign our Open Letter and respond to the NICE Consultation directly. urging Gilead, NICE and NHS England to do everything in their power to ensure Trodelvy becomes routinely available on the NHS, with a key part of this being Gilead ensuring it is affordable, so that all eligible patients across the UK can potentially benefit from this drug.

Baroness Delyth Morgan, Chief Executive at Breast Cancer Now said:

“Today’s decision is a devastating blow to women with triple negative incurable secondary breast cancer in England. Evidence shows Trodelvy can increase time before a patient’s disease progresses and, crucially, how long they live compared to being treated with chemotherapy. These women, who already face devastatingly poorer prognoses and limited treatment options, deserve the chance to benefit from this new treatment option.

“We campaigned tirelessly to see eligible patients access Trodelvy and earlier this year, secured a commitment from drug company, Gilead, to expand its pre-reimbursement access scheme to ensure more women could access the drug while we waited on NICE’s decision around its routine use on the NHS. But now, with a matter of weeks until NICE makes its final decision, action is needed more urgently than ever. Together, Gilead, NICE and NHS England must find a solution that sees this potentially life-extending drug made routinely available on the NHS, including Gilead ensuring the drug is affordable for the NHS.

“In the meantime, Gilead must guarantee that its pre-reimbursement scheme remains open to all new eligible patients as we make every effort to ensure that NICE reverses its decision.”

Sign Breast Cancer Now’s ‘It’s Time for Trodelvy’ open letter to Gilead, NHS England and NICE now: