Lords Chamber
10:07
Lord Moynihan (Conservative)
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Lord Moynihan (Conservative)
Payment Payment when Payment when on Payment when on matchdays Payment when on matchdays the purchase is made aware of what turnstile to go to with the facsimile and which member of staff to speak to to allow entry with a master access card or override button on the turnstile to allow the purchaser illegal entry into the stadium. My Lords, this is a growing problem. I hope both cases will be considered by the Home Office and addressed in legislation, not least on secondary ticketing, which hopefully will come before the House in the next session.
In the meantime, my Lords, I wish the noble Lord well and thank him for all his work on this Bill, in the hope that by avoiding any further protracted debates, the Bill may reach the statute book in this session.
In the meantime, my Lords, I wish the noble Lord well and thank him for all his work on this Bill, in the hope that by avoiding any further protracted debates, the Bill may reach the statute book in this session.
10:08
Lord Parkinson of Whitley Bay (Conservative)
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Lord Parkinson of Whitley Bay (Conservative)
My Lords, the noble Lord Lord Brennan of Canton should be very Brennan of Canton should be very proud. I don't think there can be many people who've introduced the same bill in consecutive sessions, in two different parliaments, in in two different parliaments, in two different houses, with support from two different governments. So we thank him very much for his part in ushering these provisions onto the statute book. They flow from the review led by the noble Baroness Casey of Blackstock that was commissioned by the Football Association into the events at Wembley in 2021, at the euros final, and the sensible recommendations of the culture, Media and Sport Committee, of which I think the noble Lord was a member in another place in the last Parliament.
The previous government supported these provisions before the general election, and these benches are happy to reiterate our support today. I'm glad that extends to my noble friend Lord Moynihan, who is the author of the Parent Act that the noble Lords Bill amends as noble Lords know who followed our other debates on football. This is an area of public policy that usually passes me by. I've only ever been to one football match in my life, authorised or otherwise. I can't remember who won it.
But I am looking forward this evening to seeing a play, Gerry and Sewell, which follows the adventures of two likely lads from Gateshead trying to obtain season tickets to see Newcastle United. It began in an art space above a fried chicken shop in Whitley Bay, and is playing the West End for the next two weeks, so football. Football touches the hearts of all of us. We are very grateful to the noble Lord for his Bill and wish him a speedy passage to the statute book.
Yeah.
The previous government supported these provisions before the general election, and these benches are happy to reiterate our support today. I'm glad that extends to my noble friend Lord Moynihan, who is the author of the Parent Act that the noble Lords Bill amends as noble Lords know who followed our other debates on football. This is an area of public policy that usually passes me by. I've only ever been to one football match in my life, authorised or otherwise. I can't remember who won it.
But I am looking forward this evening to seeing a play, Gerry and Sewell, which follows the adventures of two likely lads from Gateshead trying to obtain season tickets to see Newcastle United. It began in an art space above a fried chicken shop in Whitley Bay, and is playing the West End for the next two weeks, so football. Football touches the hearts of all of us. We are very grateful to the noble Lord for his Bill and wish him a speedy passage to the statute book.
Yeah.
10:09
Lord Lemos (Labour)
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Lord Lemos (Labour)
My Lord, I thank all the noble Lords for their contribution to Lords for their contribution to this, to this rather lovely debate. In a way, I'm sorry. The noble Lord, Lord Parkinson, can't remember who who won. Probably very diplomatic, and I think particularly Lord Brennan of canton for championing this important measure through both houses and in the way that the noble Lord Parkinson said, it's a it's a really important achievement. I thank also the noble Lord Lord Moynihan, formerly Colin Moynihan, the MP for Lewisham East, where I was one of his constituents.
And despite my heroic campaigning efforts, he kept winning. But today we find ourselves more or less on the same side, and I can confirm that the government has has noted that his observations and we'll think we'll think seriously about them. But I'm glad to be working with my noble friend Lord Moore, my noble friend, my friend, and the noble Lord, Lord, Lord, Lord Moynihan from from our younger days until now. The bill is about this bill is about protecting fans, ensuring that football matches remain safe, welcoming events for all, unauthorised entry, whether by tailgating or forced entry, puts genuine supporters at risk, strain security and undermines matchday experience.
With Euro 2028 matches to be played in England and Wales, we must address these issues now so fans can enjoy world class football in safety and confidence. This bill creates a clear offence for unauthorised entry and empowers courts to impose football. Banning orders. Banning orders are a proven deterrent. They prevent repeat offenders from jeopardising safety and sends a strong message that dangerous or dishonest behaviour will not be tolerated. This is not about punishing honest mistakes. I should make that clear. It safeguards ensures that only those who deliberately flout the rules will be caught.
This is a proportionate, targeted and necessary measure. It reflects the unique public order challenges associated with football, which are not seen to the same extent in other sports or events. The bill is consistent with the broader framework of the Football Offences Act 1991. The Bill has enjoyed cross-party support throughout its passage, and has been welcomed both by the Football Association and the police as a timely and effective response to a growing problem. It is a fan friendly measure that protects the vast majority of decent supporters from the actions of a dangerous minority, and will help ensure that football remains a safe, welcoming environment environment for everybody.
I
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commend it to the House. My Lords, can I thank everyone for their their contributions this for their their contributions this morning and this will be a very brief debate, I hope, and and soon to come to its conclusion. As has to come to its conclusion. As has been said, this is a bill which emerged out of Baroness Casey's review of the events at the euros final on Sunday, the 11th of July, final on Sunday, the 11th of July, 2021, and has has been referred to by Lord Parkinson.
It is a bill that I previously introduced in the House of Commons. Unfortunately, at that point, although it had completed its Committee stage, it fell when the former Prime Minister, Rishi Sunak took a walk in the rain and that was the end of the bill for the time being. But it was picked up subsequently by my colleague Lindsay Farnsworth, MP in the House of Commons, and this slightly amended version of it completed all its common stages. And it's good to be here, having been there at the kick off, to be here hopefully for the final whistle very, very shortly.
The bill's intention, obviously, is to create a deterrent to the sorts of scenes that were witnessed at the euros final by making an unauthorised entry into major football matches a specific offence subject to football banning orders. And I would like to thank like to thank my colleague Lindsay Farnsworth, who did an excellent job in steering the bill through. I'd like to thank all the officials, both from government departments, but also the staff of this House, for their help and advice in giving this bill its passage.
I'd also like to thank all the members of your Lordships' House who attended and contributed to the debates on the bill, in particular Lord Moynihan. I understand from my noble friend Lord Spellar that he was formerly known in his days as a government Minister by Dennis Skinner as the Minister for sport, rather than the Minister as as somebody who is equally vertically vertically challenged. I promise him I'll never use that term in public. I'd also like to thank the Lord Parkinson for his remarks in reminding the public how in touch we all are here in the House of Lords, with his comments on his football knowledge and my and my honourable, my noble friend.
Sorry Lord Lemos, for giving remarks from the front bench and for support on the Bill. My my Lords, I think we can all agree when all said and done, at the end of the day,
**** Possible New Speaker ****
football's the winner. I beg to move. The question. Is that this bill do now pass as
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Is that this bill do now pass as many as that many will say content, not content. The contents have it. not content. The contents have it. Second Reading of the Rare Cancers Bill Baroness Elliott of Whitburn Bay.
**** Possible New Speaker ****
Bay. My Lords, I beg to move that this bill be. Now read a second time. My Lords, it is a great
And despite my heroic campaigning efforts, he kept winning. But today we find ourselves more or less on the same side, and I can confirm that the government has has noted that his observations and we'll think we'll think seriously about them. But I'm glad to be working with my noble friend Lord Moore, my noble friend, my friend, and the noble Lord, Lord, Lord, Lord Moynihan from from our younger days until now. The bill is about this bill is about protecting fans, ensuring that football matches remain safe, welcoming events for all, unauthorised entry, whether by tailgating or forced entry, puts genuine supporters at risk, strain security and undermines matchday experience.
With Euro 2028 matches to be played in England and Wales, we must address these issues now so fans can enjoy world class football in safety and confidence. This bill creates a clear offence for unauthorised entry and empowers courts to impose football. Banning orders. Banning orders are a proven deterrent. They prevent repeat offenders from jeopardising safety and sends a strong message that dangerous or dishonest behaviour will not be tolerated. This is not about punishing honest mistakes. I should make that clear. It safeguards ensures that only those who deliberately flout the rules will be caught.
This is a proportionate, targeted and necessary measure. It reflects the unique public order challenges associated with football, which are not seen to the same extent in other sports or events. The bill is consistent with the broader framework of the Football Offences Act 1991. The Bill has enjoyed cross-party support throughout its passage, and has been welcomed both by the Football Association and the police as a timely and effective response to a growing problem. It is a fan friendly measure that protects the vast majority of decent supporters from the actions of a dangerous minority, and will help ensure that football remains a safe, welcoming environment environment for everybody.
I
**** Possible New Speaker ****
commend it to the House. My Lords, can I thank everyone for their their contributions this for their their contributions this morning and this will be a very brief debate, I hope, and and soon to come to its conclusion. As has to come to its conclusion. As has been said, this is a bill which emerged out of Baroness Casey's review of the events at the euros final on Sunday, the 11th of July, final on Sunday, the 11th of July, 2021, and has has been referred to by Lord Parkinson.
It is a bill that I previously introduced in the House of Commons. Unfortunately, at that point, although it had completed its Committee stage, it fell when the former Prime Minister, Rishi Sunak took a walk in the rain and that was the end of the bill for the time being. But it was picked up subsequently by my colleague Lindsay Farnsworth, MP in the House of Commons, and this slightly amended version of it completed all its common stages. And it's good to be here, having been there at the kick off, to be here hopefully for the final whistle very, very shortly.
The bill's intention, obviously, is to create a deterrent to the sorts of scenes that were witnessed at the euros final by making an unauthorised entry into major football matches a specific offence subject to football banning orders. And I would like to thank like to thank my colleague Lindsay Farnsworth, who did an excellent job in steering the bill through. I'd like to thank all the officials, both from government departments, but also the staff of this House, for their help and advice in giving this bill its passage.
I'd also like to thank all the members of your Lordships' House who attended and contributed to the debates on the bill, in particular Lord Moynihan. I understand from my noble friend Lord Spellar that he was formerly known in his days as a government Minister by Dennis Skinner as the Minister for sport, rather than the Minister as as somebody who is equally vertically vertically challenged. I promise him I'll never use that term in public. I'd also like to thank the Lord Parkinson for his remarks in reminding the public how in touch we all are here in the House of Lords, with his comments on his football knowledge and my and my honourable, my noble friend.
Sorry Lord Lemos, for giving remarks from the front bench and for support on the Bill. My my Lords, I think we can all agree when all said and done, at the end of the day,
**** Possible New Speaker ****
football's the winner. I beg to move. The question. Is that this bill do now pass as
**** Possible New Speaker ****
Is that this bill do now pass as many as that many will say content, not content. The contents have it. not content. The contents have it. Second Reading of the Rare Cancers Bill Baroness Elliott of Whitburn Bay.
**** Possible New Speaker ****
Bay. My Lords, I beg to move that this bill be. Now read a second time. My Lords, it is a great
10:15
Baroness Elliott of Whitburn Bay (Labour)
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Baroness Elliott of Whitburn Bay (Labour)
want to thank Doctor Scott Arthur, the Member of Parliament for Edinburgh South West, who, when drawn number six in the Private drawn number six in the Private Member's Bill ballot in the autumn of 2024, chose this crucially of 2024, chose this crucially important subject for his bill and for the energy he has put in to for the energy he has put in to getting this bill to this point. With the support of his amazing team. When my dear friend Dame Siobhan McDonagh MP asked me if I would meet with Scott with a view to taking this bill through this House, through the House of Lords, I of course, agreed.
That conversation led to me having the privilege of supporting this bill here today. I want to start by setting out the background as to why this bill is necessary and, in my view, why it is urgently needed. The term rare cancers in the terms of this bill mean the cancers that affect less than 1 in 2000 people, according to the UK Rare Diseases Framework. But in many ways I feel the term rare cancers is misleading because they represent 47% of all UK cancer diagnosis, which is 180,000 people a year.
Being diagnosed with one of these rare cancers. However, disproportionately they represent 55% of cancer deaths in the UK every year. And whilst we hear of the many, many amazing breakthroughs in cancer treatment frequently and we welcome all of them that save and extend lives for many people now living with cancer in ways that even a decade ago were not possible, those amazing breakthroughs do not apply to those people being diagnosed with one of these rare cancers, where often treatment and survival rates have not improved for decades.
With so many people dying of these rare cancers every year, something has to be done to improve this situation. The measures in this bill take the first steps to do that. I want to talk a little bit today about why I feel this is so important, and why I wanted to help and support taking this bill through Parliament. I remember the day that Siobhan told me what her sister Margaret had been diagnosed with, and the bleak prognosis she had been given as if it were yesterday.
As many people in this chamber know, someone who is affected by one of these rare cancers and will have had that same experience. I want to talk about a couple of things that have crossed my life to do with rare cancers. 20 years ago, my son went to a new school for his sixth form. One of the teachers was the mother of one of his friends. At that school. There'd be various fundraising events for the charity she had set up for inflammatory breast cancer, which my family would support.
Two years later, my twins went to the same school for sixth form. One day, in walks my 17 year old Georgia and says, I'm going to do a skydive to raise money for Mrs. Cumming's charity. I have to say she needed my permission because she was under 18, but there was no way I couldn't give her that permission. But that was the energy that Mrs. Cummings had amongst her pupils. So a few weeks later, I met the incredible woman that did the the inspirational teacher that was Leonie Cummings.
I spent two days sitting chatting to her whilst waiting for the weather to clear, for my daughter to jump out of a plane, and I knew just why. My children and many others thought the world of Mrs. Cummings. I'd never heard of inflammatory breast cancer, but after those two days I knew the symptoms and have been very aware of it ever since. Sadly, only weeks later, Leonie died, having been clear of the disease for about eight years. Then I came to the awful day.
I learned how gravely ill Siobhan's dear sister Margaret was. One of those days. You never forget. Baroness Mobarik McDonough was a distinguished member of this House for many years, known to many here today and a friend to many. I had worked with Margaret in the 90s at the Labour Party, a brilliant organiser in a class of her own, and we became friends. And if you were lucky enough to have Margaret as your friend, you were very lucky. She was one of the most loyal, kind and sometimes very scary friends you would ever have.
A week or so after Margaret fell ill, I was with Siobhan on a parliamentary visit on a day when Margaret was waiting to have her first surgery, I asked how she was and what could be done. To my horror, Siobhan said she had a glioblastoma tumour. She was having surgery that day, followed by other treatments, but the prognosis was bleak. I could not believe that a strong, driven woman like Margaret that only three months before had been at our wedding, dancing the night away, full of energy, had, in effect been given a death sentence over the next 18 months or so.
So I watched Margaret fight her cancer with the same determination and energy she always had. Sadly, she did not win this one and left us two days before her 62nd birthday in June 2023. The consultant she had found, who treated her with some of the things not available on the NHS was Paul Mulholland, who gave Margaret many more months with us, a man many of us have got to know in Margaret's last campaign, being driven with that same grit and determined McDonough energy by Siobhan to find a cure for glioblastoma.
But whilst the campaign has raised large amounts of money and now his patients in it or in its first trial, the question I ask is why do we have to raise money to do this in this way? Why are the huge research programmes within our health ecosystem not doing this? That is why this bill today, that is where this bill today comes in. It is a very short bill, but will make a significant difference to what we have now and be a first step in starting to tackle the issues we're facing.
For people facing a diagnosis of one of these rare cancers. So let us look at what this bill will do. Its aim is to improve survival rates and outcomes. Clause one marketing authorisations review requires the Secretary of State to review the regulatory framework for orphan medicinal products relating to cancer. The review must consider international regulatory approaches. A report must be published and laid before Parliament within three years of Royal Assent. It applies UK wide clause two duties of the Secretary of State.
Amend section one E of the National Health Service Act 2006. Explicitly requires promotion and facilitation of research into cancers affecting no more than 1 in 2000 people in the UK. It requires arrangements to be in place to enable identification and contact of potential clinical trial participants. It creates a statutory role of national speciality lead for rare cancers that applies in England. Clause three is information disclosed. Disclosure for research. Amends the Health and Social Care Act 2012 to allow NHS England to disclose information where necessary to facilitate clinical trials into rare cancers, an explicitly subject to existing data protection legislation and safeguards.
It applies in practice to England. This bill has had cross-party support, government support and many charities, to name a few. The Brain Tumour Charity, the Blood Cancer UK, Pancreatic Cancer UK and the Less Survivable Cancers Taskforce if passed through the House. If passed through the House of Commons unamended and it is a bill that can genuinely impact many lives in a positive way. I look forward to hearing the many contributions today from noble Lords in in this chamber.
My Lords, I beg to move.
That conversation led to me having the privilege of supporting this bill here today. I want to start by setting out the background as to why this bill is necessary and, in my view, why it is urgently needed. The term rare cancers in the terms of this bill mean the cancers that affect less than 1 in 2000 people, according to the UK Rare Diseases Framework. But in many ways I feel the term rare cancers is misleading because they represent 47% of all UK cancer diagnosis, which is 180,000 people a year.
Being diagnosed with one of these rare cancers. However, disproportionately they represent 55% of cancer deaths in the UK every year. And whilst we hear of the many, many amazing breakthroughs in cancer treatment frequently and we welcome all of them that save and extend lives for many people now living with cancer in ways that even a decade ago were not possible, those amazing breakthroughs do not apply to those people being diagnosed with one of these rare cancers, where often treatment and survival rates have not improved for decades.
With so many people dying of these rare cancers every year, something has to be done to improve this situation. The measures in this bill take the first steps to do that. I want to talk a little bit today about why I feel this is so important, and why I wanted to help and support taking this bill through Parliament. I remember the day that Siobhan told me what her sister Margaret had been diagnosed with, and the bleak prognosis she had been given as if it were yesterday.
As many people in this chamber know, someone who is affected by one of these rare cancers and will have had that same experience. I want to talk about a couple of things that have crossed my life to do with rare cancers. 20 years ago, my son went to a new school for his sixth form. One of the teachers was the mother of one of his friends. At that school. There'd be various fundraising events for the charity she had set up for inflammatory breast cancer, which my family would support.
Two years later, my twins went to the same school for sixth form. One day, in walks my 17 year old Georgia and says, I'm going to do a skydive to raise money for Mrs. Cumming's charity. I have to say she needed my permission because she was under 18, but there was no way I couldn't give her that permission. But that was the energy that Mrs. Cummings had amongst her pupils. So a few weeks later, I met the incredible woman that did the the inspirational teacher that was Leonie Cummings.
I spent two days sitting chatting to her whilst waiting for the weather to clear, for my daughter to jump out of a plane, and I knew just why. My children and many others thought the world of Mrs. Cummings. I'd never heard of inflammatory breast cancer, but after those two days I knew the symptoms and have been very aware of it ever since. Sadly, only weeks later, Leonie died, having been clear of the disease for about eight years. Then I came to the awful day.
I learned how gravely ill Siobhan's dear sister Margaret was. One of those days. You never forget. Baroness Mobarik McDonough was a distinguished member of this House for many years, known to many here today and a friend to many. I had worked with Margaret in the 90s at the Labour Party, a brilliant organiser in a class of her own, and we became friends. And if you were lucky enough to have Margaret as your friend, you were very lucky. She was one of the most loyal, kind and sometimes very scary friends you would ever have.
A week or so after Margaret fell ill, I was with Siobhan on a parliamentary visit on a day when Margaret was waiting to have her first surgery, I asked how she was and what could be done. To my horror, Siobhan said she had a glioblastoma tumour. She was having surgery that day, followed by other treatments, but the prognosis was bleak. I could not believe that a strong, driven woman like Margaret that only three months before had been at our wedding, dancing the night away, full of energy, had, in effect been given a death sentence over the next 18 months or so.
So I watched Margaret fight her cancer with the same determination and energy she always had. Sadly, she did not win this one and left us two days before her 62nd birthday in June 2023. The consultant she had found, who treated her with some of the things not available on the NHS was Paul Mulholland, who gave Margaret many more months with us, a man many of us have got to know in Margaret's last campaign, being driven with that same grit and determined McDonough energy by Siobhan to find a cure for glioblastoma.
But whilst the campaign has raised large amounts of money and now his patients in it or in its first trial, the question I ask is why do we have to raise money to do this in this way? Why are the huge research programmes within our health ecosystem not doing this? That is why this bill today, that is where this bill today comes in. It is a very short bill, but will make a significant difference to what we have now and be a first step in starting to tackle the issues we're facing.
For people facing a diagnosis of one of these rare cancers. So let us look at what this bill will do. Its aim is to improve survival rates and outcomes. Clause one marketing authorisations review requires the Secretary of State to review the regulatory framework for orphan medicinal products relating to cancer. The review must consider international regulatory approaches. A report must be published and laid before Parliament within three years of Royal Assent. It applies UK wide clause two duties of the Secretary of State.
Amend section one E of the National Health Service Act 2006. Explicitly requires promotion and facilitation of research into cancers affecting no more than 1 in 2000 people in the UK. It requires arrangements to be in place to enable identification and contact of potential clinical trial participants. It creates a statutory role of national speciality lead for rare cancers that applies in England. Clause three is information disclosed. Disclosure for research. Amends the Health and Social Care Act 2012 to allow NHS England to disclose information where necessary to facilitate clinical trials into rare cancers, an explicitly subject to existing data protection legislation and safeguards.
It applies in practice to England. This bill has had cross-party support, government support and many charities, to name a few. The Brain Tumour Charity, the Blood Cancer UK, Pancreatic Cancer UK and the Less Survivable Cancers Taskforce if passed through the House. If passed through the House of Commons unamended and it is a bill that can genuinely impact many lives in a positive way. I look forward to hearing the many contributions today from noble Lords in in this chamber.
My Lords, I beg to move.
10:24
Baroness Coffey (Conservative)
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Baroness Coffey (Conservative)
The question is that this bill >> The question is that this bill be. Now read a second time. >> My Lord. We refer any noble Lord
**** Possible New Speaker ****
My Lord. We refer any noble Lord in this House to not know or someone affected by cancer. Indeed, in the UK, nearly 500 people die from cancer every day. But those figures are not just abstract, they represent personal lives, families, friendships and futures cut short. I want to commend the noble Baroness, Lady of Whitburn, for picking up this bill and for so clearly setting out the Bill's impact. I do know, Dame Siobhan. I did not know the late Baroness McDonagh, who was clearly beloved by many.
But the impact of this bill, I think, will go a long way. I, vice chairman of the Appg for cancer, and I'm speaking for that reason, but also for a personal reason. This bill is about giving hope, giving hope to people like my friend Dawn. She's my longest standing friend from school. Just a couple of years ago, Dawn was diagnosed with a blood cancer with absolutely no prospect of a cure. Likely average lifetime of five years. Could be shorter, could be longer.
Dawn introduced me to my favourite band, muse, and we attended concerts together for many years. I have to say the thought that there may be no more of that by the end of this parliament is almost unbearable, but this is what cancer takes. Not just life, but shared moments and plans for the future. In terms of cancer, what is increasingly common and deeply troubling is that people are often diagnosed either without clarity about the type of cancer they have or without a clear understanding of treatment options.
Because their cancer is so rare. As the noble Baroness set out. Rare cancers may be individually uncommon, but collectively they are anything but rare, and around 1 in 4 diagnoses is for a rare or less common cancer. That consequence, then, for tens of thousands of adults and children each year, whose experience of cancer is then markedly worse than those of patients with more common forms. The outcomes for patients with rare cancer are consistently poorer. Diagnosis, if it can be done at all, takes longer.
Specialist expertise is harder to access, clinical trials are more difficult to find, and treatment options are limited. And I don't believe that is because the science is beyond us. Or certainly I hope not, but because our system has not been designed with rare cancers in mind. And this bill seeks to address that cap. I certainly commend Doctor Arthur MP for using his place in the private members ballot for sticking to his guns and getting a bill addressing this issue. I must admit, when I first saw the bill, having been Secretary of State, I was a bit surprised.
He felt specifically legislation was needed on identifying this research. But I do understand, having spoken to him about this bill, why he has done this. He was right to press Ministers and Department for change, and he explained to me some of the personal impact that this issue had had on him. Now, this Bill does recognise a simple truth that pharmaceutical investment naturally gravitates towards issues affecting larger numbers of people. And without targeted intervention, rare cancers have fallen through the cracks, and I believe that this bill provides that intervention and a proportionate way.
Working within existing institutional frameworks. The bill in particular, tackles a major barrier to progress, and it's good to see my noble friend Lord O'Shaughnessy here, who did a brilliant review on clinical trials, so we will avoid talking about that. But I think it is important to recognise some of the history, particularly things like the Covid vaccine, that so many people coming forward to offer to be in trials was one of the reasons why it was able to be developed and allowed to be deployed so quickly as it was.
The bill also should improve coordination. Rare cancer certainly demands specialist knowledge. Expertise is fragmented and therefore the creation of a national speciality. Lead for rare cancers will provide that strategic oversight, best practice and bring together, I hope, research data and clinical insight that are currently too often siloed. It would be great to understand if the government has yet identified who that special lead might be in terms of the issues about regulating marketing authorisations, I think it is important to say that we need to make sure the regulation is agile enough to support small patient populations in the trials and precision medicine.
I have no concerns that safety standards will be weakened down these delayed diagnoses and effective treatments and fragmented care are not cost effective, and we need to make sure that we get to a point where these are not just economically sensible, but absolutely vital that we pursue to give hope to people. Now, I did flag an advance to the Minister. I want to ask a couple of questions. One is technical simply asking about reference to the NHS in this bill. I'm hoping that she can assure me that the bill coming to abolish NHS England will explicitly address this.
The other was linked to ongoing concerns about nature and trials. Funding was provided not enough as that has been spent or been done, and the Minister set out a plan for the work. My Lords, this Bill can and must give a new focus and impetus to exploring cures for rare cancer patients.
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That's why I commend it to the house. You. My Lord.
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I thank the sponsors of this bill, Doctor Scott, Arthur and Baroness Elliott of Whitburn Bay, for bringing this bill to this House. After listening to the stories, I'm excuse me if I'm a bit emotional because I too have emotional because I too have experienced grief recently from
**** Possible New Speaker ****
My Lord. We refer any noble Lord in this House to not know or someone affected by cancer. Indeed, in the UK, nearly 500 people die from cancer every day. But those figures are not just abstract, they represent personal lives, families, friendships and futures cut short. I want to commend the noble Baroness, Lady of Whitburn, for picking up this bill and for so clearly setting out the Bill's impact. I do know, Dame Siobhan. I did not know the late Baroness McDonagh, who was clearly beloved by many.
But the impact of this bill, I think, will go a long way. I, vice chairman of the Appg for cancer, and I'm speaking for that reason, but also for a personal reason. This bill is about giving hope, giving hope to people like my friend Dawn. She's my longest standing friend from school. Just a couple of years ago, Dawn was diagnosed with a blood cancer with absolutely no prospect of a cure. Likely average lifetime of five years. Could be shorter, could be longer.
Dawn introduced me to my favourite band, muse, and we attended concerts together for many years. I have to say the thought that there may be no more of that by the end of this parliament is almost unbearable, but this is what cancer takes. Not just life, but shared moments and plans for the future. In terms of cancer, what is increasingly common and deeply troubling is that people are often diagnosed either without clarity about the type of cancer they have or without a clear understanding of treatment options.
Because their cancer is so rare. As the noble Baroness set out. Rare cancers may be individually uncommon, but collectively they are anything but rare, and around 1 in 4 diagnoses is for a rare or less common cancer. That consequence, then, for tens of thousands of adults and children each year, whose experience of cancer is then markedly worse than those of patients with more common forms. The outcomes for patients with rare cancer are consistently poorer. Diagnosis, if it can be done at all, takes longer.
Specialist expertise is harder to access, clinical trials are more difficult to find, and treatment options are limited. And I don't believe that is because the science is beyond us. Or certainly I hope not, but because our system has not been designed with rare cancers in mind. And this bill seeks to address that cap. I certainly commend Doctor Arthur MP for using his place in the private members ballot for sticking to his guns and getting a bill addressing this issue. I must admit, when I first saw the bill, having been Secretary of State, I was a bit surprised.
He felt specifically legislation was needed on identifying this research. But I do understand, having spoken to him about this bill, why he has done this. He was right to press Ministers and Department for change, and he explained to me some of the personal impact that this issue had had on him. Now, this Bill does recognise a simple truth that pharmaceutical investment naturally gravitates towards issues affecting larger numbers of people. And without targeted intervention, rare cancers have fallen through the cracks, and I believe that this bill provides that intervention and a proportionate way.
Working within existing institutional frameworks. The bill in particular, tackles a major barrier to progress, and it's good to see my noble friend Lord O'Shaughnessy here, who did a brilliant review on clinical trials, so we will avoid talking about that. But I think it is important to recognise some of the history, particularly things like the Covid vaccine, that so many people coming forward to offer to be in trials was one of the reasons why it was able to be developed and allowed to be deployed so quickly as it was.
The bill also should improve coordination. Rare cancer certainly demands specialist knowledge. Expertise is fragmented and therefore the creation of a national speciality. Lead for rare cancers will provide that strategic oversight, best practice and bring together, I hope, research data and clinical insight that are currently too often siloed. It would be great to understand if the government has yet identified who that special lead might be in terms of the issues about regulating marketing authorisations, I think it is important to say that we need to make sure the regulation is agile enough to support small patient populations in the trials and precision medicine.
I have no concerns that safety standards will be weakened down these delayed diagnoses and effective treatments and fragmented care are not cost effective, and we need to make sure that we get to a point where these are not just economically sensible, but absolutely vital that we pursue to give hope to people. Now, I did flag an advance to the Minister. I want to ask a couple of questions. One is technical simply asking about reference to the NHS in this bill. I'm hoping that she can assure me that the bill coming to abolish NHS England will explicitly address this.
The other was linked to ongoing concerns about nature and trials. Funding was provided not enough as that has been spent or been done, and the Minister set out a plan for the work. My Lords, this Bill can and must give a new focus and impetus to exploring cures for rare cancer patients.
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That's why I commend it to the house. You. My Lord.
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I thank the sponsors of this bill, Doctor Scott, Arthur and Baroness Elliott of Whitburn Bay, for bringing this bill to this House. After listening to the stories, I'm excuse me if I'm a bit emotional because I too have emotional because I too have experienced grief recently from
10:30
Lord Patel (Crossbench)
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Lord Patel (Crossbench)
from rare cancers. My Lords, I support this bill strongly and I hope we will give it swift passage unamended through this House so it can be on the statute book. I have can be on the statute book. I have 1 or 2 concerns. First of all, I understand the need for the review understand the need for the review of relating to marketing authorisation because we do need authorisation because we do need drugs to be developed urgently and we do require, therefore regulation to change that will allow for this.
And I look forward to listening to Lord O'Shaughnessy about the novel ways in which the clinical trials can be conducted to speed up this process. What I have concerns about is the timelines. My Lord. This bill gives hope to people with rare cancers from diagnoses of terminal illness to hopefully, treatment. And that's what we're hoping this bill will do. But a timeline of three years to carry out a review and no plan of implementation of that review seems rather long.
Timelines for processes and progress are in years, while timelines for tumours to advance is in weeks. Patients with rare cancers cannot wait longer, so I hope we'll address this issue about timelines. That applies also to the reports to be produced every three years, as indicated in the bill. I think the idea that there will be a lead clinician for specialist rare cancers is good, with a duty to guide, coordinate and promote research for rare cancers.
As we heard, funding for rare cancer is abysmally low by one tenth of the total government funding for research related cancer goes to rare cancers. And that must change because, as we already heard, 50% of the deaths related to cancer are in rare cancers and unless we change that, it will not make any bit of difference. Research is important, but the bedrock of research is the requirement that all these tumours, rare tumours, are genetically sequenced and therefore drugs that are already exist can be repurposed to treat diseases.
I give you an example. A gene called Braf v600e, which is a gene associated with certain forms of melanoma, was found to be effective to treat certain kinds of brain cancer and therefore it successfully treated people with rare breast cancers. Charities such as Salivary Gland Research UK, who given me a good brief and breast cancer justice, have pleaded for sequencing genomic sequencing of tumours and this we must do for each and every case to build up a registry, not just of patients who have suffered from rare cancer, but patients who have on the register with this tumour.
And we should also ask, like brain cancer justice has asked for that. The tumours be frozen at the point that they are managed or they are obtained because whether without frozen tissues, we will not be able to carry out molecular studies in the future to determine whether there are genes that are effect and therefore drugs could be developed related to that genes. So it's important that we do create registry, not just a database of patients, but also of of molecular.
My Lords, I hope this bill gives much hope to patients and I hope it will get the. I'm sorry for my.
And I look forward to listening to Lord O'Shaughnessy about the novel ways in which the clinical trials can be conducted to speed up this process. What I have concerns about is the timelines. My Lord. This bill gives hope to people with rare cancers from diagnoses of terminal illness to hopefully, treatment. And that's what we're hoping this bill will do. But a timeline of three years to carry out a review and no plan of implementation of that review seems rather long.
Timelines for processes and progress are in years, while timelines for tumours to advance is in weeks. Patients with rare cancers cannot wait longer, so I hope we'll address this issue about timelines. That applies also to the reports to be produced every three years, as indicated in the bill. I think the idea that there will be a lead clinician for specialist rare cancers is good, with a duty to guide, coordinate and promote research for rare cancers.
As we heard, funding for rare cancer is abysmally low by one tenth of the total government funding for research related cancer goes to rare cancers. And that must change because, as we already heard, 50% of the deaths related to cancer are in rare cancers and unless we change that, it will not make any bit of difference. Research is important, but the bedrock of research is the requirement that all these tumours, rare tumours, are genetically sequenced and therefore drugs that are already exist can be repurposed to treat diseases.
I give you an example. A gene called Braf v600e, which is a gene associated with certain forms of melanoma, was found to be effective to treat certain kinds of brain cancer and therefore it successfully treated people with rare breast cancers. Charities such as Salivary Gland Research UK, who given me a good brief and breast cancer justice, have pleaded for sequencing genomic sequencing of tumours and this we must do for each and every case to build up a registry, not just of patients who have suffered from rare cancer, but patients who have on the register with this tumour.
And we should also ask, like brain cancer justice has asked for that. The tumours be frozen at the point that they are managed or they are obtained because whether without frozen tissues, we will not be able to carry out molecular studies in the future to determine whether there are genes that are effect and therefore drugs could be developed related to that genes. So it's important that we do create registry, not just a database of patients, but also of of molecular.
My Lords, I hope this bill gives much hope to patients and I hope it will get the. I'm sorry for my.
10:34
Lord O'Shaughnessy (Conservative)
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Lord O'Shaughnessy (Conservative)
My Lords, before beginning, I'd just like to draw attention to my register of interests, particularly involvement with Cambridge University Health Partners, New Market Strategy and Health Data Research UK, and in particular as a patron and advisor of the Tessa Jowell Brain Cancer Mission, of which more shortly, I would like to congratulate Baroness Ellis on bringing this bill to this House and to Scott Arthur, of course, for introducing it in the other place. This House has an excellent and long standing record in promoting innovation in care and research in cancer.
The noble Lady has already talked about and referenced the campaigning by a sadly departed friend, Baroness McDonagh. We can think back even further to the Medical Innovation Bill introduced by Lord Saatchi under not dissimilar circumstances. But today I would like to pay tribute to and to encourage us to learn from the example of another dear friend departed friend. Sadly, this house which is Baroness Jowl or Tessa as everyone knew her eight years ago this month and only months before her own untimely death from a not so rare, unfortunately, cancer glioblastoma.
Tesla inspired this house in this country to do more. She wanted us to give the word that both my noble friend Baroness Coffey and the noble Lord Patel have already mentioned, which is hope. Hope to patients, hope to their families. When she finished, it was an extremely emotional event. Those who were there will remember the House rose and rightly applauded in itself a highly unusual but absolutely deserves a response. And it was my privilege to respond on behalf of the government that day.
We were able to make a number of commitments to move forward. She, of course, in a in a very typical way, wasn't just talking about her cancer, but all cancers. And we did therefore immediately afterwards bring together all the parties in the brain cancer space charities, NHS England, NIH and others and the brain cancer mission was born in her name and in tribute to her. Whether those are rare cancers or not, GBM is sadly quite common. Others, like medulloblastoma, incredibly rare, but they all suffer from the same kind of problems when it comes to treatment and research.
The aims of the Brain Cancer mission to improve the quality and equity of care, to strengthen workforces and to accelerate research, development and innovation. And I'm delighted to say thanks to the leadership of so many people, the charities that have been involved, the team and others. It is doing and has done amazing things. It supported 32 hospitals to improve the quality of that care, 14 centres of excellence in neuro oncology for adults and 11 for children, a fellows program that supporting hundreds of researchers, an academy that has trained over 1500 neuro oncology staff of every kind.
The largest data set for neuro oncology ever established and in conjunction with the Brain Tumour Research charity and the creation of a novel therapeutic accelerator. But sadly, my Lords, there is so much more to do. Brain cancer is the biggest cancer cause of death for children and indeed for adults under 40. Take GBM for example. Late diagnosis, 12 to 18 month prognosis and only 5% of people surviving more than five years. These statistics are repeated over and over for all brain tumours, but all cancers too, and the standard treatments are unchanged for decades.
That is why this bill is so important, and I want to just speak quickly to the three clauses within it. The first is around marketing authorisations, which the noble Lord Patel has already mentioned. The MHRA has made some progress through what it calls its international recognition procedure. But we need to go further and faster, and I'm looking forward to hearing from the Minister about what is happening in that sure regard to make we can accelerate those innovative treatments through to patients.
Clause two talks about a duty to support research at that Dispatch Box eight years ago, I made a promise that we would spend £40 million of NIH money on Brain tumour research, and we have not yet. The NIH has been a willing partner, but we are not supporting that research to the degree we should yet. And I'm looking forward again to hearing how that commitment and well beyond and well beyond for other cancers too, will be met from the noble Lady, the Minister. And then finally, on data clause three, the noble Lord Freyberg introduced a debate on this some years ago, and that in itself is a whole other subject which which we could talk about, but I strongly recommend commend the recommendations around this.
That clause. It reflects the recommendations been made in my own review of clinical trials, and we need to go further. Patients would be amazed to find out that their data is not being used to find trials for them, and that is where the public is and the law needs to catch up. So I want to end my Lord by just thanking again, the noble Lady for introducing the Bill and to remind us that Tesla invited us to approach the fight against cancer not with fear, but with courage and compassion.
And I think
**** Possible New Speaker ****
that is what this bill exemplifies. Yeah. Commons and can I just
**** Possible New Speaker ****
Yeah. Commons and can I just take one minute? Firstly, to commend what has just been said by commend what has just been said by the noble Lord, who I was pleased to work with many years ago when he was the Minister. And I'm very pleased that he's recalled the last occasion that my my long standing occasion that my my long standing friend, Tessa Jowell Baroness Gale made in this house. I had the privilege of being the immediate speaker after her, which is one of the most difficult occasions of my
**** Possible New Speaker ****
life. Sorry. My noble friend. So is
**** Possible New Speaker ****
Sorry. My noble friend. So is Dame is not on the list to speak, and the next speaker.
**** Possible New Speaker ****
and the next speaker. My Lords, I'm sure that not only in this House but across the country, people are grateful to country, people are grateful to Scott, Arthur, MP and Lady Elliot of Whitburn Bay for introducing of Whitburn Bay for introducing this incredibly important bill. I should declare my working life has been in palliative care and I have looked after many children and adults with rare cancers, some very close to me and some in my family. Often they seem to have missed out on the research agendas at an early stage, yet they are all incredibly generous, saying they know a study may not help them, but it will help others.
In the 1970s, I worked in a paediatric oncology unit as the early MRC trials were conducted for children with leukaemia, the prognosis was appalling, but because of the huge trials, the outcome is completely different today. This week I met a young man, Lewis, who described the intensive chemotherapy he endured, which is very novel and complex as brutal. But he knew that without that research of previous years, he would not be alive and well today. Ocular melanoma. And that's why this bill is so urgently needed.
These patients are often very young, and the primary treatment is to try to cure the malignancy. But that's not always successful. Once liver metastases occur, the standard NHS treatments available have remarkably poor outcomes and only have an effect in a small genetic subgroup, extending life expectancy by under six months. 60% of patients with metastatic uveal melanoma have no approved treatments available to them, which are specific to their disease. They rely on other drugs developed in skin cancer, a completely different disease which have limited, if any, benefit for 25 years.
Novel management of the cancer through percutaneous hepatic perfusion with melphalan chemotherapy, commonly known as chemo saturation, has been researched. It delivers high doses to the liver through a tiny catheter fed up through the groyne, while while filtering blood to protect the rest of the body. The liver deposits shrink some dramatically, with an overall 84% clinical benefit rate with improved quality of life markers. Two UK centres, Southampton and Manchester, undertake this in a researching IT survival improvement of on average over 20 months.
These are results. This is that mean that it's funded in the USA, Germany and several other European countries, but not here. Patients are having to crowdfund to have this treatment which extends their lives significantly. This is a very rare cancer, generating the level of evidence required to submit to Nice
The noble Lady has already talked about and referenced the campaigning by a sadly departed friend, Baroness McDonagh. We can think back even further to the Medical Innovation Bill introduced by Lord Saatchi under not dissimilar circumstances. But today I would like to pay tribute to and to encourage us to learn from the example of another dear friend departed friend. Sadly, this house which is Baroness Jowl or Tessa as everyone knew her eight years ago this month and only months before her own untimely death from a not so rare, unfortunately, cancer glioblastoma.
Tesla inspired this house in this country to do more. She wanted us to give the word that both my noble friend Baroness Coffey and the noble Lord Patel have already mentioned, which is hope. Hope to patients, hope to their families. When she finished, it was an extremely emotional event. Those who were there will remember the House rose and rightly applauded in itself a highly unusual but absolutely deserves a response. And it was my privilege to respond on behalf of the government that day.
We were able to make a number of commitments to move forward. She, of course, in a in a very typical way, wasn't just talking about her cancer, but all cancers. And we did therefore immediately afterwards bring together all the parties in the brain cancer space charities, NHS England, NIH and others and the brain cancer mission was born in her name and in tribute to her. Whether those are rare cancers or not, GBM is sadly quite common. Others, like medulloblastoma, incredibly rare, but they all suffer from the same kind of problems when it comes to treatment and research.
The aims of the Brain Cancer mission to improve the quality and equity of care, to strengthen workforces and to accelerate research, development and innovation. And I'm delighted to say thanks to the leadership of so many people, the charities that have been involved, the team and others. It is doing and has done amazing things. It supported 32 hospitals to improve the quality of that care, 14 centres of excellence in neuro oncology for adults and 11 for children, a fellows program that supporting hundreds of researchers, an academy that has trained over 1500 neuro oncology staff of every kind.
The largest data set for neuro oncology ever established and in conjunction with the Brain Tumour Research charity and the creation of a novel therapeutic accelerator. But sadly, my Lords, there is so much more to do. Brain cancer is the biggest cancer cause of death for children and indeed for adults under 40. Take GBM for example. Late diagnosis, 12 to 18 month prognosis and only 5% of people surviving more than five years. These statistics are repeated over and over for all brain tumours, but all cancers too, and the standard treatments are unchanged for decades.
That is why this bill is so important, and I want to just speak quickly to the three clauses within it. The first is around marketing authorisations, which the noble Lord Patel has already mentioned. The MHRA has made some progress through what it calls its international recognition procedure. But we need to go further and faster, and I'm looking forward to hearing from the Minister about what is happening in that sure regard to make we can accelerate those innovative treatments through to patients.
Clause two talks about a duty to support research at that Dispatch Box eight years ago, I made a promise that we would spend £40 million of NIH money on Brain tumour research, and we have not yet. The NIH has been a willing partner, but we are not supporting that research to the degree we should yet. And I'm looking forward again to hearing how that commitment and well beyond and well beyond for other cancers too, will be met from the noble Lady, the Minister. And then finally, on data clause three, the noble Lord Freyberg introduced a debate on this some years ago, and that in itself is a whole other subject which which we could talk about, but I strongly recommend commend the recommendations around this.
That clause. It reflects the recommendations been made in my own review of clinical trials, and we need to go further. Patients would be amazed to find out that their data is not being used to find trials for them, and that is where the public is and the law needs to catch up. So I want to end my Lord by just thanking again, the noble Lady for introducing the Bill and to remind us that Tesla invited us to approach the fight against cancer not with fear, but with courage and compassion.
And I think
**** Possible New Speaker ****
that is what this bill exemplifies. Yeah. Commons and can I just
**** Possible New Speaker ****
Yeah. Commons and can I just take one minute? Firstly, to commend what has just been said by commend what has just been said by the noble Lord, who I was pleased to work with many years ago when he was the Minister. And I'm very pleased that he's recalled the last occasion that my my long standing occasion that my my long standing friend, Tessa Jowell Baroness Gale made in this house. I had the privilege of being the immediate speaker after her, which is one of the most difficult occasions of my
**** Possible New Speaker ****
life. Sorry. My noble friend. So is
**** Possible New Speaker ****
Sorry. My noble friend. So is Dame is not on the list to speak, and the next speaker.
**** Possible New Speaker ****
and the next speaker. My Lords, I'm sure that not only in this House but across the country, people are grateful to country, people are grateful to Scott, Arthur, MP and Lady Elliot of Whitburn Bay for introducing of Whitburn Bay for introducing this incredibly important bill. I should declare my working life has been in palliative care and I have looked after many children and adults with rare cancers, some very close to me and some in my family. Often they seem to have missed out on the research agendas at an early stage, yet they are all incredibly generous, saying they know a study may not help them, but it will help others.
In the 1970s, I worked in a paediatric oncology unit as the early MRC trials were conducted for children with leukaemia, the prognosis was appalling, but because of the huge trials, the outcome is completely different today. This week I met a young man, Lewis, who described the intensive chemotherapy he endured, which is very novel and complex as brutal. But he knew that without that research of previous years, he would not be alive and well today. Ocular melanoma. And that's why this bill is so urgently needed.
These patients are often very young, and the primary treatment is to try to cure the malignancy. But that's not always successful. Once liver metastases occur, the standard NHS treatments available have remarkably poor outcomes and only have an effect in a small genetic subgroup, extending life expectancy by under six months. 60% of patients with metastatic uveal melanoma have no approved treatments available to them, which are specific to their disease. They rely on other drugs developed in skin cancer, a completely different disease which have limited, if any, benefit for 25 years.
Novel management of the cancer through percutaneous hepatic perfusion with melphalan chemotherapy, commonly known as chemo saturation, has been researched. It delivers high doses to the liver through a tiny catheter fed up through the groyne, while while filtering blood to protect the rest of the body. The liver deposits shrink some dramatically, with an overall 84% clinical benefit rate with improved quality of life markers. Two UK centres, Southampton and Manchester, undertake this in a researching IT survival improvement of on average over 20 months.
These are results. This is that mean that it's funded in the USA, Germany and several other European countries, but not here. Patients are having to crowdfund to have this treatment which extends their lives significantly. This is a very rare cancer, generating the level of evidence required to submit to Nice
10:43
Baroness Finlay of Llandaff (Crossbench)
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Baroness Finlay of Llandaff (Crossbench)
has been difficult and funding is not available. Research is not available. Research is essential. The national lead on rare cancers must be able to link rare cancers must be able to link across the UK for every person to have the opportunity to participate have the opportunity to participate in research and benefit from advancements that develop through fast track programmes. The national fast track programmes. The national lead will need to address time limited interim access pathways to clinically appropriate treatments for rare cancers, while longer term commissioning decisions are under consideration.
Where published clinical evidence and specialist expertise already exists, time is not on the patient's side. So I ask the Minister, when will the clinical lead be appointed? And is the database live across the whole of the UK already, and will the lead be able to review individual funding requests for exceptionality when no alternative exists, so that patients with rare cancers are not left without access to life extending treatments? And importantly, they and those who love them are not left without hope.
Where published clinical evidence and specialist expertise already exists, time is not on the patient's side. So I ask the Minister, when will the clinical lead be appointed? And is the database live across the whole of the UK already, and will the lead be able to review individual funding requests for exceptionality when no alternative exists, so that patients with rare cancers are not left without access to life extending treatments? And importantly, they and those who love them are not left without hope.
10:44
Lord Bourne of Aberystwyth (Conservative)
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Lord Bourne of Aberystwyth (Conservative)
Hear. >> Hear. My. >> My Lords, it's a. >> Great pleasure. >> To follow the noble Baroness Baroness Finlay, who always speaks.
**** Possible New Speaker ****
With authority. On these issues. I particularly agree with her on the timescales and indeed with the noble Lord, and indeed with the noble Lord, Lord Patel. If anything can be done about compressing the timescales, I think that would be very welcome. Could I associate myself with others who have congratulated and thank the noble Baroness Baroness Elliott of Whitburn Bay for bringing this legislation forward? It clearly is extremely important, and also to thank the hon. Member for Edinburgh South West, Doctor Scott Arthur, for introducing the Bill.
In the other place. My Lords are two very obvious things about cancer research funding. We spend a lot on cancer research. Funding is the first clear thing, but we don't spend nearly enough. And that, I think, is something that this legislation will help with. There are three key things about this legislation that have been referred to, but I'd like to stress them too. First, the role of the Secretary of State in relation to orphan drugs, those those drugs, those treatments that pharmaceutical companies don't pursue because of lack of commercial return, that clearly is something that a review will highlight and hopefully action will follow from that.
It needs to. Secondly, the contact registry clearly vital. And to facilitate that work and bring forward that legislation is something that is this legislation is doing. And I know that my noble friend Lord O'Shaughnessy has done a lot of work in this regard, and I'm sure his contribution in this legislation will be considerable. The legislation also provides, as has been said, for a knowned for a named individual responsible for overseeing the delivery of research into rare cancer treatments.
Nothing could be more vital than having that champion, I think, against rare cancers, and I very much welcome that. My my Lords, if I could move from the schematic and the general thrust of this legislation to the personal, to the deeply personal, the fight against cancer, against any illness should unite us all. Indeed it does so irrespective of party, of race, of colour, of gender, of age or social background. The very words rare cancers lend to cancer and exoticism.
It doesn't deserve to sufferers, to their families, to their friends. It's a cancer, plain and simple, a cancer that they want to combat and defeat. One such sufferer who whom I know and is in the public gallery today is Dan Horrocks. He's a parliamentary assistant in the Commons. He's a father, a husband and a four times cancer survivor. He has fought this dreadful disease, in his case, brain tumours, over the last 14 years for Dan and for millions of others of sufferers, their families and their friends, this legislation is more than welcome and it deserves our wholehearted support.
Yes.
**** Possible New Speaker ****
With authority. On these issues. I particularly agree with her on the timescales and indeed with the noble Lord, and indeed with the noble Lord, Lord Patel. If anything can be done about compressing the timescales, I think that would be very welcome. Could I associate myself with others who have congratulated and thank the noble Baroness Baroness Elliott of Whitburn Bay for bringing this legislation forward? It clearly is extremely important, and also to thank the hon. Member for Edinburgh South West, Doctor Scott Arthur, for introducing the Bill.
In the other place. My Lords are two very obvious things about cancer research funding. We spend a lot on cancer research. Funding is the first clear thing, but we don't spend nearly enough. And that, I think, is something that this legislation will help with. There are three key things about this legislation that have been referred to, but I'd like to stress them too. First, the role of the Secretary of State in relation to orphan drugs, those those drugs, those treatments that pharmaceutical companies don't pursue because of lack of commercial return, that clearly is something that a review will highlight and hopefully action will follow from that.
It needs to. Secondly, the contact registry clearly vital. And to facilitate that work and bring forward that legislation is something that is this legislation is doing. And I know that my noble friend Lord O'Shaughnessy has done a lot of work in this regard, and I'm sure his contribution in this legislation will be considerable. The legislation also provides, as has been said, for a knowned for a named individual responsible for overseeing the delivery of research into rare cancer treatments.
Nothing could be more vital than having that champion, I think, against rare cancers, and I very much welcome that. My my Lords, if I could move from the schematic and the general thrust of this legislation to the personal, to the deeply personal, the fight against cancer, against any illness should unite us all. Indeed it does so irrespective of party, of race, of colour, of gender, of age or social background. The very words rare cancers lend to cancer and exoticism.
It doesn't deserve to sufferers, to their families, to their friends. It's a cancer, plain and simple, a cancer that they want to combat and defeat. One such sufferer who whom I know and is in the public gallery today is Dan Horrocks. He's a parliamentary assistant in the Commons. He's a father, a husband and a four times cancer survivor. He has fought this dreadful disease, in his case, brain tumours, over the last 14 years for Dan and for millions of others of sufferers, their families and their friends, this legislation is more than welcome and it deserves our wholehearted support.
Yes.
10:48
Baroness Morgan of Drefelin (Labour)
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Baroness Morgan of Drefelin (Labour)
My Lords, I am absolutely delighted to take part in this delighted to take part in this Second Reading debate. And I must say that already, and we're only a third of the way through the speaker's list. This has been a very moving, but also an extremely very moving, but also an extremely well informed, very interesting and expert debate. So perhaps the House of Lords at its best. I really do want to congratulate my noble friend for bringing forward this private member's bill and also speaking so eloquently, eloquently and personally about why she's doing this.
So congratulations. We've already heard that rare cancers do have often lower survival rates. And this of course, when you look at the numbers of people being diagnosed with rare cancers as people, as noble Lords have already said, rare is is a kind of gives the wrong impression, because we do hear that it's around about 52. 55% of all cancer deaths can be attributed to these rare cancers. My Lords, acute myeloid leukaemia AML, for example, has a five year survival of just 22% and almost 80% of those who are diagnosed with AML today will not be alive in five years time.
And that just feels such a tough, a tough diagnosis. Only half will survive beyond six months. I want to pay tribute. Also in my my short remarks to the work that the charities do across the sector, charities that often have no staff are peopled by those with direct experience of loss of of the cancer type itself, of dealing with real challenges in in access to treatments. And these charities often come together in the organisation. Cancer 54 that I'm president of.
They have long been calling for more investment into research, into rare and less common cancers. And they do this, as we've heard already, because research is absolutely key for transforming survival rates. These cancers are diverse and complex and affect a large patient population. Yes, but as we've already heard so eloquently from Lord Patel that research is difficult in rare cancers, populations of of unique of uniquely sequenced types of cancer are are very, very small. So it's extremely difficult.
And so ideas like the noble Lord presents around in sequencing, around repurposing. All of these progressed through a greater attention and more funding for research, which this bill aims to deliver will really further incentivise research and investment in treatment of rare cancer types. So, my Lords, I'm particularly interested in the idea that the provision in the bill to appoint a national lead for rare cancers to ensure that patients are offered our participation, for example, in relevant clinical trials.
For far too often, my Lords, patients diagnosed with a rare cancer are not offered the opportunity to take part in trials. Cancer 52 did a survey recently of 1400 patients and found that 82% were not offered the opportunity to participate in a clinical trial and a leukaemia UK research survey echoed this sentiment, finding that half of all leukaemia patients were not given the opportunity to participate in a trial. So I support the the measures in this bill.
I support the need to create focus on rare cancers, on orphan medicines and so on, and I really look forward to hearing from the Minister her an update for the House on the work being done by the government through the development of plans like the cancer Plan, on what the government is doing to tackle the real challenges of access for patients with rare cancers. It's a great pleasure to follow the noble Ladies in her contribution this morning. This short but very important bill was brought from the Commons in July last year.
I think
So congratulations. We've already heard that rare cancers do have often lower survival rates. And this of course, when you look at the numbers of people being diagnosed with rare cancers as people, as noble Lords have already said, rare is is a kind of gives the wrong impression, because we do hear that it's around about 52. 55% of all cancer deaths can be attributed to these rare cancers. My Lords, acute myeloid leukaemia AML, for example, has a five year survival of just 22% and almost 80% of those who are diagnosed with AML today will not be alive in five years time.
And that just feels such a tough, a tough diagnosis. Only half will survive beyond six months. I want to pay tribute. Also in my my short remarks to the work that the charities do across the sector, charities that often have no staff are peopled by those with direct experience of loss of of the cancer type itself, of dealing with real challenges in in access to treatments. And these charities often come together in the organisation. Cancer 54 that I'm president of.
They have long been calling for more investment into research, into rare and less common cancers. And they do this, as we've heard already, because research is absolutely key for transforming survival rates. These cancers are diverse and complex and affect a large patient population. Yes, but as we've already heard so eloquently from Lord Patel that research is difficult in rare cancers, populations of of unique of uniquely sequenced types of cancer are are very, very small. So it's extremely difficult.
And so ideas like the noble Lord presents around in sequencing, around repurposing. All of these progressed through a greater attention and more funding for research, which this bill aims to deliver will really further incentivise research and investment in treatment of rare cancer types. So, my Lords, I'm particularly interested in the idea that the provision in the bill to appoint a national lead for rare cancers to ensure that patients are offered our participation, for example, in relevant clinical trials.
For far too often, my Lords, patients diagnosed with a rare cancer are not offered the opportunity to take part in trials. Cancer 52 did a survey recently of 1400 patients and found that 82% were not offered the opportunity to participate in a clinical trial and a leukaemia UK research survey echoed this sentiment, finding that half of all leukaemia patients were not given the opportunity to participate in a trial. So I support the the measures in this bill.
I support the need to create focus on rare cancers, on orphan medicines and so on, and I really look forward to hearing from the Minister her an update for the House on the work being done by the government through the development of plans like the cancer Plan, on what the government is doing to tackle the real challenges of access for patients with rare cancers. It's a great pleasure to follow the noble Ladies in her contribution this morning. This short but very important bill was brought from the Commons in July last year.
I think
10:52
Baroness Browning (Conservative)
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Baroness Browning (Conservative)
many of us feel we've waited a very long time for it to appear on the floor of this house, so I very much floor of this house, so I very much welcome it today. I was first contacted about it by one of the many charities who are very involved in this by the Pancreatic Cancer UK charity. And sometimes Cancer UK charity. And sometimes when we hear of cancers, whether we are personally involved or not, we become quite surprised that this particular cancer is regarded as a rare cancer.
And to find that there are so many of them well into three figures and it, as we've already heard from Baroness Elliott, that this cancer is a result of 47% of cancers diagnosed each year, are for rare or less common cancers. They account for 55% of cancer deaths, and they include some of the lowest survival rates. In the past, I've been very interested in and had communication with head and neck cancer charities, blood cancer charities, and even within one particular charity there will be many cancers that are regarded as a rare cancer.
And of course, this bill seeks to redress the these poor survival rates with greater focus, particularly on research. The less survivable Cancer Task Force supports this bill, and they say the bill would ensure that a named leading government, as we've 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, and namely would ensure there's a strategic focus on rare cancers in government for the first time.
This would help to coordinate efforts, look at gaps in a comprehensive way, and ensure these cancers become the main priority. And I hope when the Minister responds, she might flesh out a little bit about how she she sees that that role developing, we'd also ensure patients can get better access to to 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 who holds this information? This is a very important part of this bill. Currently, many patients with rare cancers miss out on potentially life extending clinical trials simply because they don't know about them. The current system makes it difficult to match eligible patients with appropriate trials, meaning trials can struggle to recruit enough participants and potentially promising treatments can't move forward. Again, I'd like if the Minister could tell us how how the medical profession is starting at primary care.
Access is themselves this sort of information. When a patient is in front of them, and it 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 aren't strong enough. Now, my Lords, I congratulate the the sponsors of both of the drug of the Bill in both houses, Doctor Scott Arthur MP and of course Baroness Elliott of Whitburn Bay who who brought this to the chamber this morning in such a lucid way.
And I hope I'm not being optimistic in saying to the government, private members bills never succeed unless government supports them. We all know that. I do hope the Minister is going to support this one.
And to find that there are so many of them well into three figures and it, as we've already heard from Baroness Elliott, that this cancer is a result of 47% of cancers diagnosed each year, are for rare or less common cancers. They account for 55% of cancer deaths, and they include some of the lowest survival rates. In the past, I've been very interested in and had communication with head and neck cancer charities, blood cancer charities, and even within one particular charity there will be many cancers that are regarded as a rare cancer.
And of course, this bill seeks to redress the these poor survival rates with greater focus, particularly on research. The less survivable Cancer Task Force supports this bill, and they say the bill would ensure that a named leading government, as we've 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, and namely would ensure there's a strategic focus on rare cancers in government for the first time.
This would help to coordinate efforts, look at gaps in a comprehensive way, and ensure these cancers become the main priority. And I hope when the Minister responds, she might flesh out a little bit about how she she sees that that role developing, we'd also ensure patients can get better access to to 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 who holds this information? This is a very important part of this bill. Currently, many patients with rare cancers miss out on potentially life extending clinical trials simply because they don't know about them. The current system makes it difficult to match eligible patients with appropriate trials, meaning trials can struggle to recruit enough participants and potentially promising treatments can't move forward. Again, I'd like if the Minister could tell us how how the medical profession is starting at primary care.
Access is themselves this sort of information. When a patient is in front of them, and it 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 aren't strong enough. Now, my Lords, I congratulate the the sponsors of both of the drug of the Bill in both houses, Doctor Scott Arthur MP and of course Baroness Elliott of Whitburn Bay who who brought this to the chamber this morning in such a lucid way.
And I hope I'm not being optimistic in saying to the government, private members bills never succeed unless government supports them. We all know that. I do hope the Minister is going to support this one.
10:56
Lord Kakkar (Crossbench)
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Lord Kakkar (Crossbench)
My great pleasure to follow the noble Lady Baroness Browning. In so doing, congratulate the noble Lady Baroness Elliott of Whitburn Bay for the very thoughtful way in which she's introduced this which she's introduced this important bill. I must remind noble Lords of my own registered interests as chairman of King's Health Partners, chairman of UK Biobank and chairman of the office for the Strategic Coordination of Health Research. My Lords, we have heard that rare and less common cancers represent a substantial burden of disease.
Some 47% of diagnoses, some 55% of deaths. And this is striking because the poor clinical outcome has been attributed to a lack of research, a lack of coordination in care, and a lack of application of resources to ensure that clinical outcomes can be improved. And the bill before your Lordships today addresses all of these matters by ensuring that there is greater accountability, by ensuring that regulation is improved, and most importantly, by ensuring that we can drive forward a meaningful research effort for a series of cancers that represent by themselves a small numbers of patients, but collectively represent, as I have said, a substantial burden.
I think it's very important. And indeed, we've heard this morning that the appointment of a national speciality lead for rare cancers is achieved quickly. We've seen in other areas and domains of clinical practice the impressive results achieved through the appointment of such leadership, for instance, in the appointment of a national speciality lead for cardiovascular disease some 20 years ago, was attended by a substantial reduction in cardiovascular mortality. We've also seen the impact that such individuals can have on the research agenda.
Regulation is vitally important in incentivising innovation, and numerous reviews and assessments have determined that in many areas, our regulation is wanting. In this area, the regulation has the potential for a substantial negative impact on innovation, and it is innovative therapies that are going to improve clinical outcomes. So review of regulation is critically important. And I share the view of the noble Lord, my noble friend Lord Patel, that this three year window for delivery of that particular review of the regulatory framework appears far too long and maybe should be addressed by His Majesty's Government.
The final part of this bill is to enhance and promote the research effort. This is critically important. The mandate that the National Institute for Health Research, as part of its be part of Research initiative, establishes a special opportunities for registers for rare disease. Rare cancers is critically important. But beyond that, as we've heard from my noble friend Lord Patel, it is important that we go beyond just knowing where the patients are and providing patients with the opportunity to participate in clinical research.
The register should go beyond and provide the opportunity for appropriate genotyping and phenotyping of rare cancers as a resource to drive future research effort, and in this regard, the sharing of data within the NHS for research purposes is critically important. We saw the benefits of that during Covid, when the Secretary of State issued a copy notice which allowed for the sharing of primary care data with UK Biobank and allowed researchers, therefore, to use that important resource to identify many treatment options and a better understanding of Covid 19.
The sharing of data that will be facilitated as part of this bill is probably one of the most important elements that will drive forward the opportunity for improving clinical outcomes for those suffering from rare cancers.
Some 47% of diagnoses, some 55% of deaths. And this is striking because the poor clinical outcome has been attributed to a lack of research, a lack of coordination in care, and a lack of application of resources to ensure that clinical outcomes can be improved. And the bill before your Lordships today addresses all of these matters by ensuring that there is greater accountability, by ensuring that regulation is improved, and most importantly, by ensuring that we can drive forward a meaningful research effort for a series of cancers that represent by themselves a small numbers of patients, but collectively represent, as I have said, a substantial burden.
I think it's very important. And indeed, we've heard this morning that the appointment of a national speciality lead for rare cancers is achieved quickly. We've seen in other areas and domains of clinical practice the impressive results achieved through the appointment of such leadership, for instance, in the appointment of a national speciality lead for cardiovascular disease some 20 years ago, was attended by a substantial reduction in cardiovascular mortality. We've also seen the impact that such individuals can have on the research agenda.
Regulation is vitally important in incentivising innovation, and numerous reviews and assessments have determined that in many areas, our regulation is wanting. In this area, the regulation has the potential for a substantial negative impact on innovation, and it is innovative therapies that are going to improve clinical outcomes. So review of regulation is critically important. And I share the view of the noble Lord, my noble friend Lord Patel, that this three year window for delivery of that particular review of the regulatory framework appears far too long and maybe should be addressed by His Majesty's Government.
The final part of this bill is to enhance and promote the research effort. This is critically important. The mandate that the National Institute for Health Research, as part of its be part of Research initiative, establishes a special opportunities for registers for rare disease. Rare cancers is critically important. But beyond that, as we've heard from my noble friend Lord Patel, it is important that we go beyond just knowing where the patients are and providing patients with the opportunity to participate in clinical research.
The register should go beyond and provide the opportunity for appropriate genotyping and phenotyping of rare cancers as a resource to drive future research effort, and in this regard, the sharing of data within the NHS for research purposes is critically important. We saw the benefits of that during Covid, when the Secretary of State issued a copy notice which allowed for the sharing of primary care data with UK Biobank and allowed researchers, therefore, to use that important resource to identify many treatment options and a better understanding of Covid 19.
The sharing of data that will be facilitated as part of this bill is probably one of the most important elements that will drive forward the opportunity for improving clinical outcomes for those suffering from rare cancers.
11:00
Lord Blencathra (Conservative)
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Lord Blencathra (Conservative)
It's a bit. Kakkar, one of Britain's top professors of surgery, and I congratulate the noble Lady Baroness Elliott of Whitburn Bay on introducing a small but important bill, and I rise to support it, since I had a couple of run ins with council in the past, and so far I'm outrunning it. And I had my first cancer at the age of 32, two years after being elected to the House of Commons. That was a bit scary, I must tell you. But the excellent doctors at the then Westminster Hospital just round the corner, fixed that.
My Yorkshire whip visited me and said in that proper style I admire in whips a lad, you'd better not die on us. We can't afford another by election now. However, I am particularly. I'm particularly grateful to the brilliant men and women of the Royal Marsden, who topped out some nasty bits six years ago. It was not rare, cancer quite common, in fact, but kills 18,000 people per annum in the UK. Now before looking at this bill properly, my Lords, I'd assume there will be a dozen or so rare cancers, but I'm shocked to discover that over 230 different ones, affecting all ages and every part of the body, diagnosis of rare cancers can be very difficult, leading to delays, and a lot of research information is often limited to common cancers.
My Lords, in the time available, I will concentrate on clause two of the bill. Science is moving at breathtaking speed and one of the fastest innovative cancer centres in the world is the Royal Marsden Hospital in Fulham. The Marsden and its partner, the Institute of Cancer Research, are translating precision diagnostics, early phase drug development, immunotherapeutics, advanced cellular and gene therapies, and AI driven imaging and data science into patient care techniques that refine what redefine what radical treatment for rare cancer means today.
Now, the Royal Marsden Foundation NHS Foundation Trust, in partnership with the Institute of Cancer Research, is widely recognised as the leading expert on one of the top specialist cancer centres in the UK, and number and in the top four worldwide for the diagnosis, treatment and research of rare cancers. Now when we get to Committee stage, I would ideally like to amend clause two to say that we do not want to appoint a person to be known as the national speciality lead for rare cancers, since I don't think there's a single person capable of undertaking that task.
However, the Royal Marsden's record makes it uniquely qualified to lead this national effort. My Lords, it's astonishing what breakthroughs they are making. There are active programmes at the royal margins, National Institute for Health and Care and Care Research Centre, and it's the only one in the margins, the only one in the country to have that to be nominated for it. And they they're translating discoveries from the test bench into the into the bedside care right across eight translational themes. Now the Royal Marsden, as I say, is noted as Europe's largest cancer centre, whose expertise is enhanced by over 2500 cancer specialists who collaborate in weekly multidisciplinary team meetings and they develop personalised treatment plans.
My Lords, there were the first hospital in the UK to use amazing DaVinci robot with four arms, which are with microsurgical tools at the end, and they can get into the small cancer bits. Surgeons big hands cannot get into. Because if you want to see something amazing, Google search DaVinci robot and look at the demo it takes. A grape is cut in half and this robot stitches the grape together again without tearing the skin. That's why when they gave me a choice, I said, I'll have the robot operating on me, please.
And they did it quite successfully. My Lords, the hospital, the royal, the the, the Marginal Hospital Sarcoma Unit is one of the largest in Europe and a world leader in sarcoma research and treatment. And that's one, as the noble Lords surgeons present will say, that's one of the many rare cancers the marginal specialises in. In closing, my Lords, the bill's measures, especially a careful review of orphan medicinal product authorisations as in clause one, will protect the incentives that turn radical science into real cures.
And putting it simply, my Lords, if we want this bill to work, there are pointing the Royal Marsden as a speciality. Lead will give the UK the leadership, infrastructure and reach required to make the aims of the Bill a reality.
My Yorkshire whip visited me and said in that proper style I admire in whips a lad, you'd better not die on us. We can't afford another by election now. However, I am particularly. I'm particularly grateful to the brilliant men and women of the Royal Marsden, who topped out some nasty bits six years ago. It was not rare, cancer quite common, in fact, but kills 18,000 people per annum in the UK. Now before looking at this bill properly, my Lords, I'd assume there will be a dozen or so rare cancers, but I'm shocked to discover that over 230 different ones, affecting all ages and every part of the body, diagnosis of rare cancers can be very difficult, leading to delays, and a lot of research information is often limited to common cancers.
My Lords, in the time available, I will concentrate on clause two of the bill. Science is moving at breathtaking speed and one of the fastest innovative cancer centres in the world is the Royal Marsden Hospital in Fulham. The Marsden and its partner, the Institute of Cancer Research, are translating precision diagnostics, early phase drug development, immunotherapeutics, advanced cellular and gene therapies, and AI driven imaging and data science into patient care techniques that refine what redefine what radical treatment for rare cancer means today.
Now, the Royal Marsden Foundation NHS Foundation Trust, in partnership with the Institute of Cancer Research, is widely recognised as the leading expert on one of the top specialist cancer centres in the UK, and number and in the top four worldwide for the diagnosis, treatment and research of rare cancers. Now when we get to Committee stage, I would ideally like to amend clause two to say that we do not want to appoint a person to be known as the national speciality lead for rare cancers, since I don't think there's a single person capable of undertaking that task.
However, the Royal Marsden's record makes it uniquely qualified to lead this national effort. My Lords, it's astonishing what breakthroughs they are making. There are active programmes at the royal margins, National Institute for Health and Care and Care Research Centre, and it's the only one in the margins, the only one in the country to have that to be nominated for it. And they they're translating discoveries from the test bench into the into the bedside care right across eight translational themes. Now the Royal Marsden, as I say, is noted as Europe's largest cancer centre, whose expertise is enhanced by over 2500 cancer specialists who collaborate in weekly multidisciplinary team meetings and they develop personalised treatment plans.
My Lords, there were the first hospital in the UK to use amazing DaVinci robot with four arms, which are with microsurgical tools at the end, and they can get into the small cancer bits. Surgeons big hands cannot get into. Because if you want to see something amazing, Google search DaVinci robot and look at the demo it takes. A grape is cut in half and this robot stitches the grape together again without tearing the skin. That's why when they gave me a choice, I said, I'll have the robot operating on me, please.
And they did it quite successfully. My Lords, the hospital, the royal, the the, the Marginal Hospital Sarcoma Unit is one of the largest in Europe and a world leader in sarcoma research and treatment. And that's one, as the noble Lords surgeons present will say, that's one of the many rare cancers the marginal specialises in. In closing, my Lords, the bill's measures, especially a careful review of orphan medicinal product authorisations as in clause one, will protect the incentives that turn radical science into real cures.
And putting it simply, my Lords, if we want this bill to work, there are pointing the Royal Marsden as a speciality. Lead will give the UK the leadership, infrastructure and reach required to make the aims of the Bill a reality.
11:05
Lord Mott (Conservative)
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Lord Mott (Conservative)
My Lords, I would like to begin by thanking the hon. Member for Edinburgh South West for first introducing this Bill in the House of Commons and Baroness Elliott of Whitburn Bay for bringing it to the House today. Whilst I have campaigned extensively on prostate cancer, which is the most common cancer in England, it is important that all cancer patients get the treatment they need and taken as a whole, rare and less common cancers account for nearly half of all cancer diagnoses in the UK today.
As we've heard from a number of noble Lords already today, I will focus on two key areas regulation and research. The. The MH EFRA is a highly respected regulator with patient safety rightly at its core. However, rare cancers pose unique regulatory challenges that cannot always be addressed using the same evidentiary standards designed for common conditions. Patient populations are small and often geographically dispersed. Randomised controlled trials may be impractical, and real world evidence and international data become even more important.
The review of marketing authorisations for orphan drugs is therefore welcome, and it is important that we examine how much flexibility exists within the system to support innovation, including greater use of adaptive licensing, conditional approvals or role in evidence models better aligning with other jurisdictions so that data from international trials can be used here, ensuring a clear pathway for early dialogue between researchers, clinicians, regulators and patient groups so that trials are rigorous and feasible and that ultimately life saving and extending treatments can be approved as quickly as possible.
There are also challenges around research design. Traditional, traditional models of cancer research have delivered huge progress, but they are not always well suited to rare cancers, as we've heard today. By definition, rare cancers have smaller patient cohorts, meaning limited recruitment opportunities. Data may be less robust due to the smaller sample size, and the commercial market for treatments may be less attractive to investors, and the commercial market. Sorry, and the bill's emphasis on facilitating research and improving patient identification for trials is therefore critical.
But this must go hand in hand with regulatory improvement to see safe treatments quickly brought to market. I would like to briefly highlight two examples. The first has already been mentioned is glioblastoma, a rare and aggressive brain tumour. Survival rates have not improved in more than 50 years, and treatment options remain limited. Yet the nature of it means research is complex. Trials are difficult to design and patient numbers are necessarily small, making innovation improved. Trial access and regulatory flexibility essential if outcomes are ever to improve.
I also wish to briefly return to prostate cancer. Within it are rare and aggressive subtypes that behave very differently from early stage prostate cancer. Rare subtypes of common cancers like this can face challenges strikingly similar to those experienced by patients with rare with rarer diagnosis. This is not about competing for resources, but highlighting the complexity of these issues. I support this bill as one with potential to make a real difference for patients whose diseases have too often been overlooked, we need a research environment that can gather robust data, reach the right patients and be supported to develop new treatment and a regulatory framework that reflects the unique challenges that come with rare diseases.
To get safe and effective treatments approved as quickly as possible. If we get this right, we can not only improve outcomes for people with rare cancers today, but reshape how we think about evidence, regulation and fairness in healthcare for years to come.
As we've heard from a number of noble Lords already today, I will focus on two key areas regulation and research. The. The MH EFRA is a highly respected regulator with patient safety rightly at its core. However, rare cancers pose unique regulatory challenges that cannot always be addressed using the same evidentiary standards designed for common conditions. Patient populations are small and often geographically dispersed. Randomised controlled trials may be impractical, and real world evidence and international data become even more important.
The review of marketing authorisations for orphan drugs is therefore welcome, and it is important that we examine how much flexibility exists within the system to support innovation, including greater use of adaptive licensing, conditional approvals or role in evidence models better aligning with other jurisdictions so that data from international trials can be used here, ensuring a clear pathway for early dialogue between researchers, clinicians, regulators and patient groups so that trials are rigorous and feasible and that ultimately life saving and extending treatments can be approved as quickly as possible.
There are also challenges around research design. Traditional, traditional models of cancer research have delivered huge progress, but they are not always well suited to rare cancers, as we've heard today. By definition, rare cancers have smaller patient cohorts, meaning limited recruitment opportunities. Data may be less robust due to the smaller sample size, and the commercial market for treatments may be less attractive to investors, and the commercial market. Sorry, and the bill's emphasis on facilitating research and improving patient identification for trials is therefore critical.
But this must go hand in hand with regulatory improvement to see safe treatments quickly brought to market. I would like to briefly highlight two examples. The first has already been mentioned is glioblastoma, a rare and aggressive brain tumour. Survival rates have not improved in more than 50 years, and treatment options remain limited. Yet the nature of it means research is complex. Trials are difficult to design and patient numbers are necessarily small, making innovation improved. Trial access and regulatory flexibility essential if outcomes are ever to improve.
I also wish to briefly return to prostate cancer. Within it are rare and aggressive subtypes that behave very differently from early stage prostate cancer. Rare subtypes of common cancers like this can face challenges strikingly similar to those experienced by patients with rare with rarer diagnosis. This is not about competing for resources, but highlighting the complexity of these issues. I support this bill as one with potential to make a real difference for patients whose diseases have too often been overlooked, we need a research environment that can gather robust data, reach the right patients and be supported to develop new treatment and a regulatory framework that reflects the unique challenges that come with rare diseases.
To get safe and effective treatments approved as quickly as possible. If we get this right, we can not only improve outcomes for people with rare cancers today, but reshape how we think about evidence, regulation and fairness in healthcare for years to come.
11:09
Baroness Grey-Thompson (Crossbench)
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Baroness Grey-Thompson (Crossbench)
I'd like to. >> Or bringing this bill to your Lordships chamber today, and also pay tribute to two members of our Lordships chamber who are no longer Lordships chamber who are no longer with us. Baroness McDonagh, Baroness Jowell, who both had a huge impact on my own career. For about the last year I've been working with Kerry and Frances Davis and their campaign to highlight the challenges that face families who have a terminally ill child. Their website, It's Never You, clearly highlights many of the issues their son, Hugh had rhabdomyosarcoma, a rare cancer affecting muscles attached to bone which spread throughout his abdomen.
He was diagnosed in late 2020 and passed away in September 2021 at the age of six after undergoing intensive treatment, including radiotherapy. His parents described receiving the diagnosis as being thrown into an ice bath, having a concrete weight tied around your feet and the trauma that they experienced. With my work with them. I have an amendment in the Children's Wellbeing in Schools Bill, which may be debated on Monday, which asks for more research to find the true extent and impact that rare cancers have on families.
And it seeks to require the Secretary of State to report to Parliament on the barriers preventing parents being at the bedside of critically ill children. While the Journal of Paediatric Psychology and The Lancet Psychiatry has said that 30 to 50% of parents with critically ill children meet the diagnostic threshold for PD, the BMJ open has said that parents are more likely to experience anxiety, depression and suicidal thoughts. A mothers have a 50% increase in mortality and while there's no current target for research or funding allocation to be spent on paediatric cancer research, it appears that only 3% of current spend the national spend is is put in this area because it's rare, but we've heard it in your Lordships chamber today that these cancers are far from rare.
We have to be look beyond seeing it as a market to how we can truly help people. So I would like to see a minimum annual research target that is set for rare childhood cancers, and that the progress is published. My Lords, I strongly support this bill, especially the creation of the National Speciality Lead, and I hope that we can do that at pace, because the impact of this bill will be felt by so many, not just those with a cancer diagnosis, but their families as well.
And we've heard that a number of organisations that support this bill. Cancer research UK and others have highlighted how many fewer treatment options there are for those with rare cancers and also brain cancer. Patients have been in touch with me to say that they need far more support. My Lords, this week, Kerry and Francis Mini Davis hosted an event in Parliament and they now campaign under the banner Parents Deserve Better. My Lords, yes they do and this bill will help with that.
He was diagnosed in late 2020 and passed away in September 2021 at the age of six after undergoing intensive treatment, including radiotherapy. His parents described receiving the diagnosis as being thrown into an ice bath, having a concrete weight tied around your feet and the trauma that they experienced. With my work with them. I have an amendment in the Children's Wellbeing in Schools Bill, which may be debated on Monday, which asks for more research to find the true extent and impact that rare cancers have on families.
And it seeks to require the Secretary of State to report to Parliament on the barriers preventing parents being at the bedside of critically ill children. While the Journal of Paediatric Psychology and The Lancet Psychiatry has said that 30 to 50% of parents with critically ill children meet the diagnostic threshold for PD, the BMJ open has said that parents are more likely to experience anxiety, depression and suicidal thoughts. A mothers have a 50% increase in mortality and while there's no current target for research or funding allocation to be spent on paediatric cancer research, it appears that only 3% of current spend the national spend is is put in this area because it's rare, but we've heard it in your Lordships chamber today that these cancers are far from rare.
We have to be look beyond seeing it as a market to how we can truly help people. So I would like to see a minimum annual research target that is set for rare childhood cancers, and that the progress is published. My Lords, I strongly support this bill, especially the creation of the National Speciality Lead, and I hope that we can do that at pace, because the impact of this bill will be felt by so many, not just those with a cancer diagnosis, but their families as well.
And we've heard that a number of organisations that support this bill. Cancer research UK and others have highlighted how many fewer treatment options there are for those with rare cancers and also brain cancer. Patients have been in touch with me to say that they need far more support. My Lords, this week, Kerry and Francis Mini Davis hosted an event in Parliament and they now campaign under the banner Parents Deserve Better. My Lords, yes they do and this bill will help with that.
11:12
Lord Polak (Conservative)
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Lord Polak (Conservative)
My daughter. friend, the noble Lady Baroness Grey-Thompson, if I may just turn to the Lord O'Shaughnessy, who reminded us of that day. And I was sitting here, and that special day when Tessa Jowell spoke. But if I can add, and I think this is what Lord Blunkett was, was trying to say, that he the Lord O'Shaughnessy he he replied in that difficult moment with sympathy, with empathy and dignity. And I will always remember that too. I register interest. I am the vice chairman of the all party group for brain tumours, and I was diagnosed with a brain tumour back in 1988, and I'm one of the lucky ones.
And following the words of Lord Patel and I understand his bravery and his pain, many patients are unaware that tumour tissue removed during surgery may be used for diagnostic refinement, research and the development of future treatments, and that patients have choices about how that tissue is stored. This is acute in brain cancers and other rare cancers, where diagnosis is devastating, treatment is urgent, and patients and their families face complex decisions at moments of extreme distress. So in following in the forthcoming cancer plan, I believe there should be one a commitment to improving public and patient awareness of consent, including for tissue use in research, a commitment to clear and consistent national messaging developed with patients and carers about how consent can work, and a commitment to find ways so that the public can give advanced information.
Digital in advance. Informed consent, rather than at that moment of crisis. And let me pay tribute to the professor Katrina Kurian, Professor of Neuropathology at University of Bristol Medical School. She has advised me she is a friend and sadly some months ago she lost her own husband to brain cancer. And finally, earlier this week, I also had the privilege of meeting two courageous young men, Tom Riley and Dan Horrocks. My noble friend Lord Bourne has just spoken beautifully about Dan, both of them suffering from brain cancer.
But rather than just suffer, what they've done is they set up a grassroots organisation called Brain Cancer Justice, a movement of patients and families living with the consequences of, as they describe, under research, fragmented trials and a lack of accountability. They agreed that whilst the bill in itself is modest, it is, however, essential and I congratulate Doctor Scott, Arthur MP and the noble Lady Baroness Elliott and thank them for their leadership. My Lords, the Bill provides that leadership that will improve access to clinical trials and tests, whether the incentives for rare cancer medicines are indeed fit for purpose.
And I am honoured to support this Bill. But I urge the Minister to find a way to get it on the statute book as quickly as possible.
And following the words of Lord Patel and I understand his bravery and his pain, many patients are unaware that tumour tissue removed during surgery may be used for diagnostic refinement, research and the development of future treatments, and that patients have choices about how that tissue is stored. This is acute in brain cancers and other rare cancers, where diagnosis is devastating, treatment is urgent, and patients and their families face complex decisions at moments of extreme distress. So in following in the forthcoming cancer plan, I believe there should be one a commitment to improving public and patient awareness of consent, including for tissue use in research, a commitment to clear and consistent national messaging developed with patients and carers about how consent can work, and a commitment to find ways so that the public can give advanced information.
Digital in advance. Informed consent, rather than at that moment of crisis. And let me pay tribute to the professor Katrina Kurian, Professor of Neuropathology at University of Bristol Medical School. She has advised me she is a friend and sadly some months ago she lost her own husband to brain cancer. And finally, earlier this week, I also had the privilege of meeting two courageous young men, Tom Riley and Dan Horrocks. My noble friend Lord Bourne has just spoken beautifully about Dan, both of them suffering from brain cancer.
But rather than just suffer, what they've done is they set up a grassroots organisation called Brain Cancer Justice, a movement of patients and families living with the consequences of, as they describe, under research, fragmented trials and a lack of accountability. They agreed that whilst the bill in itself is modest, it is, however, essential and I congratulate Doctor Scott, Arthur MP and the noble Lady Baroness Elliott and thank them for their leadership. My Lords, the Bill provides that leadership that will improve access to clinical trials and tests, whether the incentives for rare cancer medicines are indeed fit for purpose.
And I am honoured to support this Bill. But I urge the Minister to find a way to get it on the statute book as quickly as possible.
11:15
Lord Mendelsohn (Labour)
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Lord Mendelsohn (Labour)
My Lords, I'd like to thank and congratulate Baroness Elliott of Whitburn Bay for bringing this into this House and for being able to get all of us in this chamber, to be able to focus on these issues. And we've heard from a number of colleagues here about their own personal stories, people they know, and, of course, those we admire. I think today of my dear friend, the former member for Alderman Phil Willis, who today is challenging, you know, and fighting for his life against one of these terrible cancers that we face.
I just wanted to declare my interest. I am the trustee and director of the Follicular Lymphoma Foundation, the UK arm, the US arm and the Israel arm. It's an international charity established to try and find a cure for follicular lymphoma. Because my real declaration of interest is my wife suffers from this cancer and incurable cancer, but a chronically treatable cancer. And so she, being the dynamic person that she is, decided, having been convinced by some brilliant researchers here that we were on the cusp of the potential for curative options to set up a foundation to do so.
And we have done and we have done so. She was diagnosed in 2016, started treatment in 2018, curtailed during Covid. She's in remission, but it will come back at some point. And I am very pleased to say that a huge amount of progress has been made. And whereas there was only one option for the next line of therapy, there are now a considerable number. The thing that I am disappointed about is that most of those are available outside the UK and not in the UK, so if she's to be treated in the most effective way, it cannot be currently in the UK.
I hope that will change by the time her condition comes back, because this is the point that I really want to get across about where we are. The the, the bill raises the importance of research and focuses us on rare cancers. And we do run by some traditional notions that these things are becoming, you know, have inherent difficulties and challenges which are not changing with times. They are, in the case of follicular lymphoma, advances that we can make in the research and the pursuit of a cure will certainly be contributory factors to helping 32 other cancers, which have very significant genetic sharing with the condition that we're focusing on the use of data, other sorts of things, the sorts of stuff that used to make these things really difficult now are reasons why the opportunity in science is so large, and that is why we can really look to the future at this moment, as a wonderful moment of opportunity where we can cure some of these cancers, not by, in most cases, one silver bullet by a variety of treatments and different modalities.
And here is why the bill is so essential. And not just the bill, but its support and its and its commitment by government is because we are a great country with great clinical practitioners and researchers. The noble Lord Kakkar is a perfect illustration. The noble Lord Darzi. We have got some of the finest. We've got great institutions, we've got a great history behind this, we've got scale and we've got opportunities not fully tapped with the NHS, but we are falling behind because of things that we're not doing in research, actually in culture, because of the consequences of the lack of research money from Brexit and others, even with philanthropy and capital.
And it is hard for us to apply the money that we could in the UK, and we apply much more money in other places outside that, including countries which have got public policy supporting this, because it is easier to do so, especially in areas of rare cancers. So this is so important to make progress on this. And for someone who is committed to doing as best as we can here, it pains me when we have rounds of funding where we are not giving to the UK, we are in other places or even where countries of smaller population where data is so important, we use for a place like Israel, which is able to scale what it's got in a way that we can't.
We are the country that should be at the lead of this. But finally, I just want to turn to the point. Car-T is a key therapy for us. It will be a transformational therapy for so many cancers. And the problem we have in this country is that we are reliant on trials and we are not using it as a treatment. And it's not just that Charlotte, a patient suffering from it that I know, who was told this will be the next line of therapy.
It is no longer available even at King's, one of our great institutions, which can't even recruit people for it. Because the real challenge here is that we have to send out these samples to another country to get them done, whereas in other countries they have labs in the hospitals which do these treatments. If we just focus on not applying the best that we can do, supporting the research, but getting it into treatment so that we have the right relationship with pharma and biotech, we will restrict ourselves.
This bill is a start. We have to support it.
I just wanted to declare my interest. I am the trustee and director of the Follicular Lymphoma Foundation, the UK arm, the US arm and the Israel arm. It's an international charity established to try and find a cure for follicular lymphoma. Because my real declaration of interest is my wife suffers from this cancer and incurable cancer, but a chronically treatable cancer. And so she, being the dynamic person that she is, decided, having been convinced by some brilliant researchers here that we were on the cusp of the potential for curative options to set up a foundation to do so.
And we have done and we have done so. She was diagnosed in 2016, started treatment in 2018, curtailed during Covid. She's in remission, but it will come back at some point. And I am very pleased to say that a huge amount of progress has been made. And whereas there was only one option for the next line of therapy, there are now a considerable number. The thing that I am disappointed about is that most of those are available outside the UK and not in the UK, so if she's to be treated in the most effective way, it cannot be currently in the UK.
I hope that will change by the time her condition comes back, because this is the point that I really want to get across about where we are. The the, the bill raises the importance of research and focuses us on rare cancers. And we do run by some traditional notions that these things are becoming, you know, have inherent difficulties and challenges which are not changing with times. They are, in the case of follicular lymphoma, advances that we can make in the research and the pursuit of a cure will certainly be contributory factors to helping 32 other cancers, which have very significant genetic sharing with the condition that we're focusing on the use of data, other sorts of things, the sorts of stuff that used to make these things really difficult now are reasons why the opportunity in science is so large, and that is why we can really look to the future at this moment, as a wonderful moment of opportunity where we can cure some of these cancers, not by, in most cases, one silver bullet by a variety of treatments and different modalities.
And here is why the bill is so essential. And not just the bill, but its support and its and its commitment by government is because we are a great country with great clinical practitioners and researchers. The noble Lord Kakkar is a perfect illustration. The noble Lord Darzi. We have got some of the finest. We've got great institutions, we've got a great history behind this, we've got scale and we've got opportunities not fully tapped with the NHS, but we are falling behind because of things that we're not doing in research, actually in culture, because of the consequences of the lack of research money from Brexit and others, even with philanthropy and capital.
And it is hard for us to apply the money that we could in the UK, and we apply much more money in other places outside that, including countries which have got public policy supporting this, because it is easier to do so, especially in areas of rare cancers. So this is so important to make progress on this. And for someone who is committed to doing as best as we can here, it pains me when we have rounds of funding where we are not giving to the UK, we are in other places or even where countries of smaller population where data is so important, we use for a place like Israel, which is able to scale what it's got in a way that we can't.
We are the country that should be at the lead of this. But finally, I just want to turn to the point. Car-T is a key therapy for us. It will be a transformational therapy for so many cancers. And the problem we have in this country is that we are reliant on trials and we are not using it as a treatment. And it's not just that Charlotte, a patient suffering from it that I know, who was told this will be the next line of therapy.
It is no longer available even at King's, one of our great institutions, which can't even recruit people for it. Because the real challenge here is that we have to send out these samples to another country to get them done, whereas in other countries they have labs in the hospitals which do these treatments. If we just focus on not applying the best that we can do, supporting the research, but getting it into treatment so that we have the right relationship with pharma and biotech, we will restrict ourselves.
This bill is a start. We have to support it.
11:21
Lord Randall of Uxbridge (Conservative)
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Lord Randall of Uxbridge (Conservative)
So I'm humbled to be following >> So I'm humbled to be following the honourable Lord Mendelsohn and indeed previous contributions. I indeed previous contributions. I don't know much about all this, and that's you might wonder why I'm speaking in this, because it seemed to me to be something for people who've got knowledge, specialities, personal experiences. But the reason is, and I congratulate the noble Lady Baroness Elliott of Whitburn Bay and indeed the Member of Parliament, Doctor Scott Arthur MP.
I have had two, I'll say, former constituents. One is Councillor Becky Hagar, who's a former mayor of Hillingdon, who has had sadly, her husband passed away through this. But she set up the Hillingdon Brain Tumour and Injury Group. And another Hillingdon resident who's been in constant communication with me in such a kind way, considering her son is going through terrible treatment, as far as I can see. So I asked her, I said I'm going to speak in it because I want to give support.
I'm not an expert. I just want to know that people have my support. And I asked her what was the I said, we've got four minutes. And I said, what is the most important thing to say? And she said, appointing a national speciality lead us along with brain cancer justice. They want to have this national cancer as an essential element of this bill. And she talking about brain tumours. But I know there are more. But the complexity of brain tumours and it's vital, she says, that the government appointee fully understands brain and other rare cancers to prevent them from being overlooked, especially since brain cancer remains the leading cause of cancer related deaths among children and people under 40.
An immediate nomination and appointment are urgently needed as patients can't afford to wait, this should be a top priority integrated into the National Cancer Plan, and data shows that while 20% of research funding goes to rare cancers, they account for around 40% of cancer deaths. So given their complexity, brain cancers must not be overlooked. When the UK government launches initiatives like the NHS National Cancer Vaccine Launch Pad. What I would just say to noble Lords here is that we have to have also awareness campaigns.
I think there's a the fact that most of these people very often just present to A&E, they just as an emergency and like 40 to 60% of diagnoses are done after presenting to A&E. But what I would say is, and we've heard from other noble Lords previously, and presumably after me, there's two things I would say is the urgency of this. And I would urge my noble friend not to put any amendments down. No, noble Lord, noble friend, not to put any amendments down.
If it makes this go longer than we would like. And we know how it works. We've always seen these private member's bills. And I would say the other thing that comes through plainly is hope. As we've been speaking, no doubt there are people throughout the country who have been just given a very devastating prognosis as we speak. We don't know where it is. It could be amongst us here, but certainly there will be some. And this bill, as far as I can say, may not the answer, be but it will give hope.
So I give it my full support.
I have had two, I'll say, former constituents. One is Councillor Becky Hagar, who's a former mayor of Hillingdon, who has had sadly, her husband passed away through this. But she set up the Hillingdon Brain Tumour and Injury Group. And another Hillingdon resident who's been in constant communication with me in such a kind way, considering her son is going through terrible treatment, as far as I can see. So I asked her, I said I'm going to speak in it because I want to give support.
I'm not an expert. I just want to know that people have my support. And I asked her what was the I said, we've got four minutes. And I said, what is the most important thing to say? And she said, appointing a national speciality lead us along with brain cancer justice. They want to have this national cancer as an essential element of this bill. And she talking about brain tumours. But I know there are more. But the complexity of brain tumours and it's vital, she says, that the government appointee fully understands brain and other rare cancers to prevent them from being overlooked, especially since brain cancer remains the leading cause of cancer related deaths among children and people under 40.
An immediate nomination and appointment are urgently needed as patients can't afford to wait, this should be a top priority integrated into the National Cancer Plan, and data shows that while 20% of research funding goes to rare cancers, they account for around 40% of cancer deaths. So given their complexity, brain cancers must not be overlooked. When the UK government launches initiatives like the NHS National Cancer Vaccine Launch Pad. What I would just say to noble Lords here is that we have to have also awareness campaigns.
I think there's a the fact that most of these people very often just present to A&E, they just as an emergency and like 40 to 60% of diagnoses are done after presenting to A&E. But what I would say is, and we've heard from other noble Lords previously, and presumably after me, there's two things I would say is the urgency of this. And I would urge my noble friend not to put any amendments down. No, noble Lord, noble friend, not to put any amendments down.
If it makes this go longer than we would like. And we know how it works. We've always seen these private member's bills. And I would say the other thing that comes through plainly is hope. As we've been speaking, no doubt there are people throughout the country who have been just given a very devastating prognosis as we speak. We don't know where it is. It could be amongst us here, but certainly there will be some. And this bill, as far as I can say, may not the answer, be but it will give hope.
So I give it my full support.
11:24
Lord St John of Bletso (Crossbench)
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Lord St John of Bletso (Crossbench)
Yes. >> The noble Baroness Elliott of Whitburn Bay for introducing this very worthwhile bill which has cross-party support. I should declare a personal interest and I was diagnosed with lung cancer last year. It was early stage lung year. It was early stage lung cancer and as the noble Lord Lord Blencathra said, I was treated with the Da Vinci robot, which was highly successful. But the statistics are alarming. As other noble Lords have mentioned, rare cancers account for up to 47% of all diagnosis and sadly, 55% of all deaths.
And we often speak of the battle against cancer in monolithic terms. If it was a single enemy to be defeated. But the reality is it is a war fought on a thousand different fronts. As we're all aware, pharmaceutical companies are profit driven enterprises. When a cancer affects only a small number of patients, the potential revenue cannot justify the enormous cost of drug development. And it means, sadly, that patients with rare cancers are often left behind not because treatments are impossible, but because they are not profitable.
The less survivable cancers, which include many rare cancers which are noble Lord O'Shaughnessy very aptly was describing about the challenges of brain cancer. But it's also pancreatic cancer and liver cancer. They only receive 19% of research funding, and when markets fail, it is the responsibility and duty of government to step in. Now, I was interested to see that the US Orphan Drug Act of 1983 was highly effective in America in dramatically increasing orphan drug approvals, but concerned that way back in 2013, the UK was ranked
And we often speak of the battle against cancer in monolithic terms. If it was a single enemy to be defeated. But the reality is it is a war fought on a thousand different fronts. As we're all aware, pharmaceutical companies are profit driven enterprises. When a cancer affects only a small number of patients, the potential revenue cannot justify the enormous cost of drug development. And it means, sadly, that patients with rare cancers are often left behind not because treatments are impossible, but because they are not profitable.
The less survivable cancers, which include many rare cancers which are noble Lord O'Shaughnessy very aptly was describing about the challenges of brain cancer. But it's also pancreatic cancer and liver cancer. They only receive 19% of research funding, and when markets fail, it is the responsibility and duty of government to step in. Now, I was interested to see that the US Orphan Drug Act of 1983 was highly effective in America in dramatically increasing orphan drug approvals, but concerned that way back in 2013, the UK was ranked