Campaign launched to raise awareness of “rare” cancer

By Martin Banks

Paralympian Erin Kennedy has given her backing to a campaign which aims to “inspire real change” for cancer patients.

The Briton was speaking to mark the launch of a new “Triple Negative Breast Cancer” (TNBC) campaign.

The campaign, called “I count: Triple Negative Breast Cancer Matters,” is designed to ensure people with TNBC feel that they count and are being counted by policymakers with the power to shape cancer services.

In TNBC, the cancer cells do not have receptors for the hormones, oestrogen, progesterone and HER2, this means that there are less treatments available.

Around 8,000 people are estimated to be diagnosed with TNBC each year in the UK alone, making up around 15% of breast cancer cases.

Despite making up a relatively small proportion of breast cancer diagnoses, TNBC accounts for 30-40% of breast cancer deaths worldwide.

Global data shows TNBC disproportionately affects women under the age of 40, black women and women with the BRCA gene mutation.

The campaign sets out a number of recommendations to improve the care and experiences of people living with TNBC.

It recommendations are:

  • NHS England should routinely collect, publish and analyse TNBC data at the national level;
  • People diagnosed with TNBC should have access to the full range of information and holistic support offered by the NHS and charity sector.
  • Every woman of reproductive age diagnosed with TNBC should have the option to access information and support around their fertility options.
  • NHS England should ensure that every person with TNBC has a designated Pathway Navigator, or equivalent role, to guide them through their treatment pathway

MSD (Musculoskeletal disorders) and the UK Charity for TNBC, recently held an event sponsored by UK MP Craig Tracey,Chair of the All-Party Parliamentary Group for Breast Cancer, to mark the launch of the campaign.

 The keynote speech was given by Kennedy, a Paralympian and TNBC patient advocate, and attendees included a number of healthcare professionals, 9 Members of Parliament and 6 patient groups.

Kennedy said, “It is a real privilege to be a part of the ‘I count’ campaign.”

“In May 2022, I was diagnosed with Triple Negative Breast Cancer at the age of 29 and underwent 15 rounds of chemotherapy and a double mastectomy. I know how impactful this campaign will be to so many in our community.”

“It was scary being diagnosed with TNBC – I knew there were a limited number of treatment lines and I was confused by the lack of available statistics.”

“This campaign has the power to inspire real change, from diagnosis to treatment and recovery, as well as tackle the data gap and I am excited to be a part of it.”

Twelves said, “People with Triple Negative Breast Cancer tell us that the diagnosis changes everything.”

“TNBC is different from other types of breast cancer, having fewer treatment options and consequently fewer people surviving long term. The physical, psychological, emotional and financial implications can be considerably greater than for those with other breast cancers.”

“This is why the UK Charity for TNBC is delighted to be partnering with MSD in the ‘I count’ campaign, to raise awareness of TNBC and ensure that patients’ voices are heard.”

“The specific ‘I count’ recommendations aim to improve the care and experiences of people diagnosed by driving change, improving each person’s experience from diagnosis, through treatment and beyond.”

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