Bringing the TNBC Patient Voice to Gilead Sciences on World Patient Safety Day

On World Patient Safety Day, 17 September, Jane, The UK Charity for TNBC's Patient Advisory Panel (PAP) Support Partner, was invited to Gilead Sciences in Cambridge to share her experience of triple negative breast cancer (TNBC) with members of the Gilead team.

Jane was interviewed by Dr Keith Aizen, Physician and Senior Director of Patient Safety at Gilead, with the conversation also broadcast live to colleagues at other sites.

The aim was to bring the person behind the patient safety data to life, helping those responsible for monitoring and reporting on medicine safety better understand the real experiences of people undergoing cancer treatment.

Who Are Gilead Sciences?

Gilead Sciences is a global biopharmaceutical company that researches and develops medicines for serious diseases, including HIV, viral hepatitis and cancer.

In breast cancer, Gilead develops Trodelvy (sacituzumab govitecan), an antibody-drug conjugate (ADC) used to treat certain types of advanced breast cancer, including TNBC. The treatment uses an antibody to target a protein called Trop-2, found on many cancer cells, and deliver a chemotherapy drug.

Trodelvy has been recommended by NICE for use on the NHS for eligible patients with locally advanced or metastatic TNBC who have previously received at least two systemic treatments.

Engaging with pharmaceutical companies like Gilead is an important part of The UK Charity for TNBC's advocacy work, helping to bring the experiences and needs of people affected by TNBC directly to those involved in developing medicines and monitoring their safety.

Sharing the Patient Experience

During the discussion, Jane spoke openly about her experience, from having to work out for herself that her breast cancer diagnosis was TNBC, to navigating debilitating treatment side effects and hospitalisation.

A key theme was the importance of understanding treatment side effects from the patient's perspective, including the potential under-reporting of side effects and the limitations of clinical data in capturing their full impact.

While clinical trials and safety reports provide essential information about treatments, hearing directly from patients helps pharmaceutical teams understand what these side effects mean in everyday life, how severely they affect individuals and what additional care or information may be needed.

Why These Conversations Matter

Patient safety teams work behind the scenes to monitor and evaluate the safety of medicines. Their work helps inform how side effects are recognised, communicated and managed, ultimately influencing the information and care available to patients.

For The UK Charity for TNBC, opportunities like this are incredibly valuable. By connecting people with lived experience directly with the pharmaceutical industry, we can help raise awareness of the challenges faced by people with TNBC and encourage a greater understanding of patient needs.

These conversations also reflect our wider commitment to ensuring that patient voices are heard and considered in discussions about cancer treatments, patient safety and care.

We would like to thank Dr Keith Aizen and the wider Gilead team for creating this opportunity and listening so carefully to Jane's experience.

We are also incredibly grateful to Jane for sharing her story and helping us ensure that the experiences and concerns of people affected by TNBC continue to be heard.

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