Dr Scott Arthur MP has laid a Private Members’ Bill before Parliament entitled the Rare Cancers Bill. This Bill is inspired by his father-in-law, who sadly died of a glioblastoma in 2018, only six months after being diagnosed.
The aim of this bill is to incentivise research and investment into the treatment of rare cancers, like glioblastoma and many other types of brain tumours.
In this blog:
How we’re supporting Dr Scott Arthur MP and the Rare Cancers Bill
The Brain Tumour Charity has worked with Scott’s office throughout this process and have fed in our comments on its contents on behalf of the brain tumour community, as one of the rare cancers potentially covered by the bill. This has been alongside charities in the brain tumour and wider rare cancers space, including Brain Tumour Research, Pancreatic Cancer UK and partners in the Less Survivable Cancers Taskforce.
The contents of the bill will make it easier for patients to be easily contacted about research, including clinical trials, by creating a registry service for patients with rare cancers and the public as well as improving access to the patient population for researchers.
It will also ensure there is adequate oversight of research delivery for rare cancers, by appointing a named person in each nation throughout the UK to provide leadership and advice for the delivery of rare cancer research.
Lastly it will trigger a review of orphan drugs legislation and place a duty on the government to assess whether these regulations are continuing to effectively incentivise the development of drugs for rare conditions (‘orphan drugs’) with severe patient impact and high unmet clinical need.
Scott’s letter calling for public support of the Rare Cancers Bill
Dr Scott Arthur MP has written to the community to explain why the Rare Cancers Bill is important to him.
Below is Scott’s letter.
Dear supporter,
In May 2018, my wife lost her father, Ivor Hutchison, to a brain tumour just six months after he was diagnosed.
When I was successful in securing time to introduce a Private Members’ Bill, I spoke to many people. A colleague, Dame Siobhain McDonagh MP, who had also lost her sister Margaret to a Glioblastoma suggested a Bill addressing the challenges facing those diagnosed with rare cancers, including brain tumours.
I then spoke to my wife and children about the prospect of introducing a Bill looking at tackling this issue, in which my son spoke about his most treasured memories of his grandfather. It made me realise how many treasurable moments we could’ve had with Ivor had the tumour not robbed him from us. It was thinking about the similar heartbreak that will have been felt by tens of thousands of families that made me realise I had to pick this Bill.
The Rare Cancers Bill draws much needed focus to these diseases and provides greater accountability for the delivery of research in this area. It will trigger a review into the UK’s regulations on potentially life-saving drugs, and it will make practical changes to the UK’s clinical trial databases making it easier for patients to access cutting-edge trials.
I am asking you to write to your MP to do two things:
- To meet with me and representatives of leading rare cancer charities for a Drop-in information session the Bill on Monday, 3 March at 2:15pm in Room O of Portcullis House.
- That they attend the second reading of the Rare Cancers Bill on Friday, 14 March, and ask that they vote in favour of the Bill.
Thank you for your support, and in memory of Ivor, and all those we have lost to rare cancers, let us work together to find a cure for these horrific diseases.
Yours,
Scott
Dr Scott Arthur MP
Member of Parliament for Edinburgh South West
How can you get involved?
On the 14th March this Bill will have its second reading in Parliament.
To guarantee its passage, we need 100 supportive MPs to support this.
We are asking you to write to your local MP and ask them to attend the debate on the 14th.
To find out who your MP is please click the button below:
This will bring up who it is and their email address.
Copy and paste the letter below into an email and copy the email address of your MP and send it to them.
Please feel free to personalise the letter and share your story, if you wish.
Be sure to include your address, including postcode, as many MPs will not respond to correspondence unless they can identify that they are your local representative.
Email template for writing to your MP
Subject: Please support the Rare Cancers Bill
Dear XXX MP,
My name is XXXX and I am one of your constituents [insert address]. As my MP I am writing to ask if you will support the Rare Cancers Bill, due to have its second reading on the 14th March.
This Private Members’ Bill has been proposed by Dr Scott Arthur MP, and is inspired by his father-in-law who sadly died of a glioblastoma in 2018, only six months after diagnosis.
At present 47% of cancers diagnosed in the UK are rare and less common and 55% of cancer deaths are from rare and less common cancers.
180,000 people will be diagnosed with a rare and less common cancer and more than 92,000 people will die from a rare or less common cancer.
Yet, despite overall cancer survival rates rising by nearly 10 per cent between 2005 and 2020, rare cancers account for many of the lowest rates of survival, with some having a 1-year survival rate of less than 50 per cent.
The aim of the bill is to incentivise research and investment into the treatment of rare cancers and begin to close this gap.
It will achieve this by:
- ensuring patients can be easily contacted about research, including clinical trials, by creating a registry service for patients with rare cancers and the public as well as improving access to the patient population for researchers.
- ensuring there is adequate oversight of research delivery for rare cancers, by appointing a named person in each nation to provide leadership and advice for the delivery of rare cancer research.
- placing a duty on the Government to assess whether orphan drugs regulations are continuing to effectively incentivise the development of drugs for rare conditions (‘orphan drugs’) with severe patient impact and high unmet clinical need.
As your constituent, I would welcome your support of this Bill and ask that you attend the second reading on the 14th March.
I look forward to hearing from you.
Many thanks
XXXXX
(insert address)