Jenny Riddell-Carpenter

I start by thanking my hon. Friend the Member for Edinburgh South West (Dr Arthur) for bringing forward this important Bill. I thank the many other Members from across the House who have contributed so movingly today, and my constituents who reached out to me to share their views. I will try to keep my contribution brief, because I know others will want to speak. In particular, I would like to thank Maria and her daughter Lauren, who told me about Maria’s journey and her fight against leiomyosarcoma—I am the second person today to struggle to pronounce that word—and how that diagnosis, during the covid lockdowns, turned her life upside down. Navigating the pandemic was hard enough; navigating it while one of the people you love most in the world is suffering with cancer must have been nearly impossible. Maria is still living with leiomyosarcoma and has chemotherapy once a month. As she and her daughter told me, living with cancer is tough enough; when it is a rare cancer, patients live with the fear that the disease will act quicker than the research makes progress. That is why this Bill is so important. We need to close the gap in the treatment so that more people diagnosed with rare cancers have the same chance of survival as those with other cancers. Another constituent of mine knows the cost of that all too well. He has asked me not to share his or his wife’s name, but instead to tell her story. She passed away last year after being diagnosed with leiomyosarcoma. Despite the best efforts of the oncology unit, the rarity of the cancer meant that it took too long to identify her condition. A year of chemotherapy followed, sadly to no avail. Although I have two examples of leiomyosarcoma in my constituency, it is incredibly rare. One challenge of that cancer is its genetic variability and the fact that it has many different subtypes. Personalised medicine is particularly important for rare cancers with different subtypes, but because of the small number of patients with leiomyosarcoma, it is extremely difficult, if not impossible, to run robust clinical trials. Research is possible, however, and great strides are being made in the US, showing that better treatment and outcomes are possible. It is vital that we incentivise research of and investment into the treatment of rare cancers and begin to close that gap. I thank my hon. Friend again for introducing this important debate and the Bill.