Rare Cancers Bill

Baroness Browning Excerpts

Friday 16th January 2026 Lords Chamber

[Baroness Browning (Con)]

My Lords, it is a great pleasure to follow the noble Baroness in her contribution this morning. This short but very important Bill was brought from the Commons in July last year. Many of us feel we have waited a very long time for it to appear on the Floor of this House, so I very much welcome it today.

I was first contacted about it by one of the many charities which are very involved in this, Pancreatic Cancer UK. Sometimes, when we hear of cancers, whether we are personally involved or not, we are quite surprised that this cancer is regarded as a rare cancer and to find that there are so many of them—well into three figures. As we have already heard from the noble Baroness, Lady Elliott, 47% of cancers diagnosed each year are for rare or less common cancers. They account for 55% of cancer deaths and include some of the lowest survival rates. In the past, I have been very interested and had communication with head and neck cancer charities and blood cancer charities. Even within one charity, there will be many cancers that are regarded as a rare cancer.

Of course, the Bill seeks to redress these poor survival rates with greater focus, particularly on research. The Less Survivable Cancers Taskforce supports the Bill. It says that the Bill would ensure that there is a named lead in government, as we have already heard, with a responsibility to support research and innovation for rare cancers. As it stands, these cancers often struggle to attract research funding and attention compared to other diseases. A named lead would ensure that there was a strategic focus on rare cancers in government for the first time. This would help to co-ordinate efforts, look at gaps comprehensively and ensure that these cancers become the main priority. I hope that when the Minister responds she might flesh out a little bit how she sees that role developing.

The Bill would also ensure that patients can get better access to and find relevant research and clinical trials. I think many of us have encountered people who, in diagnosis of a rare cancer, or very often just any cancer, are desperate to find trials that are going on. Where do you start to look? Who holds this information? This is a very important part of the Bill. Currently, many patients with rare cancers miss out on potentially life-extending clinical trials simply because they do not know about them. The current system makes it difficult to match eligible patients with appropriate trials, meaning that trials can struggle to recruit enough participants and, potentially, promising treatments cannot move forward. Again, I would like it if the Minister could tell us how the medical profession, starting at primary care, accesses this sort of information when a patient is in front of them.

The Bill places a duty on the Government to review and potentially strengthen orphan drug regulations. The orphan drug regulations aim to incentivise research into rare diseases, because the current incentives for pharmaceutical companies to develop treatments for rare cancers are not strong enough.

I congratulate the sponsors of the Bill in both Houses, Dr Scott Arthur MP and the noble Baroness, Lady Elliott of Whitburn Bay, who brought it to the Chamber this morning in such a lucid way. I hope I am not being optimistic in saying to the Government that Private Members’ Bills never succeed unless government supports them; we all know that. I hope the Minister is going to support this one.