This week we joined "The Future of UK Life Sciences Regulation Conference" in London. The life sciences comprise the branches of science that involve the scientific study of life – namely biology and it's sub-disciplines.
Some life sciences focus on a specific type of organism, such as zoology or botany, while other life sciences focus on aspects common to all or many life forms, such as anatomy and genetics. Some focus on the micro-scale (e.g. molecular biology, biochemistry), others on larger scales (e.g. cytology, immunology, ethology, pharmacy, ecology). Another major branch of life sciences involves understanding the mind – neuroscience.
Life sciences discoveries are helpful in improving the quality and standard of life and have provided information on certain diseases, which has aided the understanding of human health. However, these discoveries can only help if they are allowed, or regulated in a way to give them access to market, and it was this regulation that was the subject of the conference.
Three key organisations were in attendance:
1) The Medicines and Healthcare products Regulatory Agency (MHRA) – an executive agency of the Department of Health and Social Care in the United Kingdom, which is responsible for ensuring that medicines and medical devices work and are acceptably safe.
2) The National Institute for Health and Care Excellence (NICE) – an executive non-departmental public body, in England, of the Department of Health and Social Care (DHSC), which publishes guidelines in four areas:
- the use of health technologies
- clinical practice
- guidance for public sector workers on health promotion and ill-health avoidance
- guidance for social care services and users.
These appraisals are based primarily on evidence-based evaluations of efficacy, safety and cost-effectiveness in various circumstances.
3)The National Health Service (NHS) – the publicly funded healthcare system in England, which provides healthcare to all legal English residents and residents from other regions of the UK, with most services free at the point of use for most people
If we are to expedite new treatment options from the scientist's bench to the patient's bedside, then this triumvirate need to be working in an innovative yet harmonious fashion, and the journey to that was at the heart of this week's conference.
The new Government sees the life sciences industry as pivotal to its plans for the economy and healthcare, so it wasn't surprising that Baroness Merron (who Thomas has met twice recently) opened the conference by saying that DHSC is a department for growth, offering huge potential for the life sciences sector. She continued to relate that now it is time to seize the moment and that Government are planning to facilitate this by bringing in new legislation next year to encourage a simpler and faster regulatory environment.
Following Baroness Merron, speaker after speaker detailed the opportunities presented by the agreement, known as VPAG, between DHSC, NHS England and The Association of the British Pharmaceutical Industry (ABPI) to support patient access to medicines, the financial sustainability of the NHS and the UK life sciences sector. They spoke about the MHRA's new pathway supporting innovative approaches to the safe, timely and efficient development of medicines to improve patient access, known as ILAP. We also heard about NHS England’s newly named directorate to secure patient access to innovative and everyday medicines, and ensure value is provided for taxpayers from every penny spent, known as the Medicines Value and Access function (MVA)
The mood was energetic, positive and optimistic – we were pleased to be there, but we won't take our foot off the pedal. Strong words need actions that back them up and if we feel our community is continuing to be poorly served by the regulatory authorities, we will use the tools at our disposal to lobby, cajole and change.
At the conference, one key speaker was brain tumour advocate and former Health Minister Lord O'Shaughnessy, who produced the influential Commercial clinical trials in the UK: the Lord O’Shaughnessy review last year. Baroness Merron said that the Government planned to implement the review's recommendations and we asked Lord O'Shaughnessy for his view of the current clinical trial landscape. He told us:
"The good news is that, on the regulatory side, things are moving much more quickly. There is still plenty of money coming in, particularly in academic trials. The next barrier is twofold. One of which is to keep growing the number of commercial intervention trials; there has not been that many in brain cancer, but there are new products coming through, so we need to attract more of those here. The second is then to make sure that the NHS is able to run those trials, and that is still a work in progress."
Huge thanks to those of you who have already contacted your MP about this but, in case you missed it last week, please do help us support our APPG by asking your MP to join us for a meeting with a packed agenda, including an update from the NIHR on the deployment of money allocated for research into brain tumours and the Brain Tumour Research Consortium, plus news of a surgical implant aimed to stop tumour recurrence.
It will be held at Westminster on Tuesday 26th November from 5:00pm. The more MPs involved, the more we amplify our voice for change. Please could you all send the following (or a personalised version of the following) as a ‘Save the Date’ email to your MPs this weekend? Remember to Cc me (hugh@braintumourresearch.org).
Subject: APPG on Brain Tumours 26th November 5:00pm–6:00pm Room Q PCH
Dear <Your MP’s name>
The APPG on Brain Tumours will be taking place in Room Q of Portcullis House on Tuesday 26th November from 5:00pm–6:00pm and will be chaired by Dame Siobhain McDonagh MP. An agenda and a briefing document from the charity Brain Tumour Research, who provide the APPG’s secretariat, will be forthcoming in due course and Hugh from the Charity is Cc’d.
As your constituent, and as someone who is passionate about improving options and outcomes for brain tumour patients, I am asking if you could please make space in your diary and join that meeting.
It would be hugely appreciated.
…..
<Your Name>
<Your postal address and postcode>
No apologies either for once again promoting a very special campaigning webinar on Tuesday 3rd December from 6:30pm–7:30pm. It will be held on the Zoom platform and we are delighted that we will be joined by Will Quince (pictured below with Thomas and Hugh), who this time last year was Minister of State for Health and Secondary Care
It was during his time as a Minister that we engaged with him, and he spent time answering questions from MPs on topics such as Government spend on research into brain tumours, and he also met with us on a number of occasions. To have him join us for the webinar presents a real opportunity to hear from someone with recent lived experience on how best to campaign effectively, what gets the best cut through and how he might consider the best way for us to take our campaigning agenda forward.
If you would like to join the webinar on the 3rd December, please let us know and email us at campaigning@braintumourresearch.org
This week, we attended a presentation by Dr Nicky Huskens, CEO of the Tessa Jowell Brain Cancer Mission, on its Closing the Gap report regarding access to genomic testing. The report highlights the need to establish central Genomic Tumour Advisory Boards to streamline the testing process.
At present, it can take as long as 11 months for genomic test results to be delivered. Given that brain tumour patients don't have the luxury of time, this issue requires urgent attention. We must invest in improving the testing pathway to create an integrated system that delivers timely results for patients. You can find the report here.
At this week’s Cross-Party Group on Cancer in Wales, the spotlight was firmly on Children and Young People. Before the meeting got underway, David Rees MS was re-elected as Chair of the Cross-Party Group. Also in attendance was Altaf Hussain MS (below, left) and Mark Isherwood MS (below, right).
There were presentations given by representatives of Young Lives v Cancer, Teenage Cancer Trust, The Joshua Tree and Latch.
In Wales,180 people under the age of 25 are diagnosed with cancer every year – and cancer is still the biggest killer of children. As we well know, brain tumours are the biggest cancer killer of children.
Cancer in young people brings system challenges and complications, such as fertility, and developmental and psychological issues. Patients often require the support of specialist services. Explicit actions are not made for this group of cancer patients.
Currently, children’s cancer services are commissioned and funded via NHS Joint Commissioning Committee (JCC), but teenage and young adult services are not. Moreover, Teenage and Young Adult specifications and standards have not been updated in a number of years, in some cases for more than 14 years.
Inconsistencies and gaps in care continue, especially for the16–17 year old age group, but also for matters concerning fertility, drug access, rapid diagnostic services, tumour banking, as well as access to allied health care professionals.
Lauren Marks, Young Lives v Cancer, told the group that children and young people with cancer experience long travel distances, and costs, due to accessing care in specialist paediatric treatment centres. Costs increase because of the frequent and long-term nature of their travel due to their treatment. In all, 73% of children and young people from Wales report having to travel outside of Wales for some, or all, of their care. According to the Young Lives v Cancer report 'Running on Empty', the average monthly travel costs are £30 pounds more for children and young people in Wales.
Those representing children and young people with cancer recommended:
- A dedicated strategic approach for children and young people with cancer
- An urgent review, update and alignment of commissioning arrangements, services specifications and standards
- For datasets to provide more information on the experiences of children and young people with cancer
- The creation of an Under-16 Cancer Patient Experience Survey
- The establishment of a Young Cancer Patient Travel Fund
- Ensuring accessible mental health support, from diagnosis to post-treatment, by enhancing the awareness and availability of services
- Access to high-quality emotional and psychological support in Welsh and English
Mark Isherwood MS shared his story of when his daughter went to her GP and was told that she “couldn’t possibly have cancer” because she was too young. Altaf Hussain MS said that everything needed to be done to improve accessibility. He suggested ensuring that families are supported with blue badges, for example.
Cross Party Chair David Rees concluded the meeting by stating the importance of the topic, and that it needed to be revisited at future meetings.
That's it for this week, but we will be back next Friday and we will have an update from our annual researcher workshop taking place in York.
Please do take the time this weekend to ask your MP to join us at the APPG meeting later this month.
Wishing you all a peaceful week,
Hugh, Thomas and Evan
Published 8th November 2024