Rare Cancers Bill

Lauren Sullivan Excerpts

Friday 14th March 2025 Commons Chamber

[Dr Lauren Sullivan (Gravesham) (Lab)]

I am here today to support the Rare Cancers Bill, a vital piece of legislation introduced by our hon. Friend the Member for Edinburgh South West (Dr Arthur). I begin by paying tribute to his father-in-law and all those who have shared their stories here today.

My hon. Friend’s story, like so many, is a stark reminder of how aggressive and under-researched cancers can be, leaving patients with little or no hope. It is assumed that rare cancers, as has been mentioned today, affect a low number of people, but that is not the case. Cancer Research UK says that rare and less common cancers account for 47% of all UK cancer diagnoses and 55% of all cancer-related deaths. Some 82% of rare cancer patients are never even consulted about joining a clinical trial. That means that while each individual rare cancer may affect relatively few people, together they make up almost half of cancer cases, yet the funding and research remain disproportionately low.

I will briefly mention Charlie Shrager, one of my constituents in Gravesham. Like so many, she is fighting cholangiocarcinoma, or bile duct cancer. It is a supposedly rare but devastating form of liver cancer, and there is rising incidence. In 2001, 2.9 out of 100,000 people were diagnosed with it. In 2018, it was 4.6. Some 79% of these patients are diagnosed at stage 3 or stage 4, meaning that their likelihood of survival is limited. Histotripsy is a non-invasive treatment that uses sonic beam therapy. It is incredible. The problem is that we do not have a machine in the UK. They cost £10 million, and let us get one here, because for people facing this disease or pancreatic cancer, it is a lifesaver, and they desperately need it. As Charlie put it:

“I was lucky enough to afford treatment abroad, but I know many who aren’t. They don’t have that option. Why should their chances depend on their bank balance?”

We must recognise that “rare” does not mean “insignificant”. People across the UK are battling cancers that remain underfunded, under-researched and underserved by clinical trials, which is criminal. It is a pattern that is repeated again and again with bile duct cancer, glioblastoma, leiomyosarcoma—a rare soft tissue cancer that demands personalised medicine—pancreatic cancer and blood cancers. Each of these cancers devastates lives. We have discussed what the Bill can do: appoint a national specialty lead for rare cancers, review and improve the UK’s orphan drug regulations, and improve data sharing.

As a research scientist in biochemistry, I worked on neglected infectious diseases and came across the Drugs for Neglected Diseases initiative. It was launched 25 years ago to co-ordinate research outcomes, negotiate with big pharma and test drugs that have been developed for other neglected diseases, and it is now eliminating diseases across the globe. It can be done—we have the blueprint—so I urge the Minister to reach out to that initiative to see what we can learn and implement here.

For too long, rare and neglected cancers have meant a rare chance of survival, and that must change. Given the strength of feeling among everybody here, there is the will to bring about change. I look forward to seeing the Bill go forward, and to seeing that people are not left behind and that we find a cure for everybody.