Rare Cancers Bill

Sam Rushworth Excerpts

Friday 11th July 2025 Commons Chamber

[Sam Rushworth (Bishop Auckland) (Lab)]

I rise to support the Bill, which will make a real difference by improving the detection and treatment of rare cancers. We heard really moving contributions on Second Reading, particularly from my hon. Friends the Members for Mitcham and Morden (Dame Siobhain McDonagh) and for Calder Valley (Josh Fenton-Glynn).

With permission from my hon. Friend the Member for Edinburgh South West (Dr Arthur), I will take this opportunity to press the Minister on research into lobular breast cancer, echoing the comments of the hon. Member for Farnham and Bordon (Gregory Stafford). Twenty-two people a day are diagnosed with lobular breast cancer in the UK; at around 30 in 2,000, it falls outside the scope of the Bill. However, with a UK population of 70 million, 22 a day would popularly be deemed to be rare. More importantly, it has unmet clinical need, and that is what really matters.

Lobular breast cancer was first identified as a separate type of breast cancer 50 years ago, and while breast cancer survival rates have generally improved, research specifically into lobular has been rare and grossly underfunded, and the basic biology of the disease remains mostly unknown. That has led to two effects. First, it is difficult to detect as its web-like structure means that it does not have the typical lump, so it often spreads before it gets detected. Secondly, there is no bespoke treatment, so doctors will throw the kitchen sink at it—radio and chemo—and hope for the best.

Scientists say that a treatment for lobular can be developed; the only reason it has not is lack of funding for research. In May 2023, Dr Susan Michaelis, who had been diagnosed with lobular 12 years earlier, launched the lobular moonshot project. One of the moonshot campaigners is my constituent Katie Swinburne: a mother of three and a popular local school teacher. I met Katie recently in her home, along with Susan and her husband Tristan Loraine.

Susan had deteriorated since we had met on Zoom. She explained that her cancer was terminal—it was too late to save her—but she was determined to spend her last years campaigning for change. We hoped that she would have years to come. Katie, however, still has a hope for treatment and a cure in her lifetime. She hopes to see her children grow old and to carry grandchildren.

This coming Monday, as has been said, we were due to meet the Secretary of State to press the case for £20 million for the lobular moonshot project, which is just £240 for every person diagnosed. We will still press ahead with that meeting, but two days ago Dr Susan Michaelis, the founder of the moonshot project, sadly passed away 14 years after her initial diagnosis. She died peacefully at 5 pm, proudly wearing her lobular moonshot project T-shirt. She was surrounded by her husband Tristan Loraine and some close friends.

The lobular moonshot project is the most bipartisan, politically supported campaign in the nation right now, with 370 MPs from across all parties having called on the Government to fund this vital research. During her 14 years’ suffering with this cruel and brutal illness, Susan was given eight different forms of breast cancer treatment, but none of them was able to stop the disease progressing. None of the treatments she received was based on the basic biology of lobular breast cancer because, as I said, it has not yet been explored.

In the last couple of years, Susan and a team of campaigning women who have been touched by the disease have already raised £125,000 to set up the infrastructure to carry out research at the Manchester breast centre led by Professor Robert Clarke. Her remarkable campaign has touched women across the country. If I may, I will share a few comments about Susan.

As a young girl, Susan always dreamed of being a pilot, but there were few opportunities for women to become commercial pilots in Australia at the time so she completed a degree in marketing and saved up the money to become a private pilot. After teaching people to fly, she finally became an airline pilot, starting off in the challenging Northern Territory of Australia flying to remote communities.

In 1994, when she was 32, Susan started flying the British Aerospace 146 and immediately noticed a strange smell in the aircraft. The breathing air supply was being contaminated with jet engine oil decomposition products. Despite being told that there was nothing to be concerned about, she suffered increasing health effects from those exposures, and three years later in 1997 she collapsed after a flight. She felt like she was having a stroke. Three years of exposure to a complex mix of chemicals including organophosphates, carbon monoxide and endocrine disrupting chemicals had seriously affected her health, and she lost her airline pilot medical certificate. She never flew as an airline pilot again.

Two years later, Susan was partly responsible for the Australian Senate carrying out a year-long investigation into the problem, which concluded that the chemical exposures were affecting flight safety and crew and public health. She was determined that the aviation industry should resolve the problem so she undertook the first ever PhD into the subject, and later qualified as an air accident investigator. She published numerous scientific papers on the subject, and briefed airlines, oil manufacturers, Governments and countless others on the topics.

In 2007, 10 years after her first flight as an airline pilot, Australian Senator O’Brien revealed a secret agreement between British Aerospace, the aircraft engine manufacturer, and two Australian airlines, in which a large sum of money and aircraft parts were given in a settlement for problems relating to oil contaminating the breathing air supply on the aircraft model that Susan flew. After her injuries, sustained as an airline pilot, Susan completed Half Ironman triathlons and became the first Australian to receive the British citizen award for her and Tristan’s work on aviation safety. Last year, the Dr Susan Michaelis rose was launched by Harkness Roses at the Chelsea flower show. Susan has appeared or been portrayed in numerous documentaries and films. She will be greatly missed, but the campaign that she founded will live on.