Funding for research into brain tumours: Government Response to the Petitions Committee’s First Report of Session 2015–16 Contents

Government Response

Summary

Early diagnosis and treatment of cancer, including brain tumours, is a priority for this Government.

We invest more than £1.7 billion every year into health research and work closely with patients, charities and our world-leading life sciences industry to support further research into this devastating disease.

The role of charities is vital. Through the Association of Medical Research Charities the Minister for Life Sciences, George Freeman has made a comprehensive offer for the views of charities to be heard and for them to be at the forefront of driving research and innovation in the new landscape of life science research co-ordination.

In addition, the Accelerated Access Review is considering how to speed up access to innovative drugs, devices and diagnostics for people using NHS services.

The Government welcome the Committee’s report – and accept that action is needed to address the strong concerns expressed in the report and by members of the public who signed the e-petition.

There is insufficient research being carried out to reduce the significant disease burden caused by brain tumours. As he announced in the House of Commons debate on the e-petition on 18 April, the Minister for Life Sciences will be convening a working group of clinicians, charities and officials to discuss how working together with our research funding partners, we can address the need for more brain tumour research.

1.A number of measures are needed to address the needs of brain tumour patients. The first step should be to increase the awareness of brain tumours and to increase the numbers of tumours diagnosed early. It is clear that brain tumour patients are being failed repeatedly. (Paragraph 46)

Government response

2.Earlier diagnosis could improve survival rates and improve patients’ quality of life. Earlier diagnosis could also help to increase the numbers of patients able to take part in clinical trials as well as the diversity of tissue samples available for researchers. Moreover, it would clearly be less distressing for patients and their families if they could be diagnosed before their symptoms become so severe that they present at Accident and Emergency. (Paragraph 47)

Government response

3.Earlier diagnosis will rely to a large extent on increasing awareness amongst GPs and other front line healthcare professionals about the symptoms of brain tumours. The Committee was impressed by the HeadSmart campaign which shows how guidance can have such a positive impact in a relatively short space of time without over burdening GPs. (Paragraph 48)

4.The Government should provide greater leadership and support to raise awareness of brain tumours amongst GPs and other healthcare professionals in order to increase earlier diagnosis of brain tumours. It should:

Government response

5.Brain tumour research has been seriously underfunded over decades, putting it far behind many other cancers in terms of the improvements in outcomes for patients. The Committee has heard evidence which suggests that there is a correlation between the amount of funding of research into a specific cancer and improved survival rates and/or reduced incidences. It is clear that existing levels of funding have not been sufficient for researchers to be able to make significant advances in their understanding of this devastating disease. Increased investment into research into the causes of brain tumours and into potential treatments is urgently needed. (Paragraph 70)

6.In its response to the petition, the Government has not explained clearly whether it believes that current levels of funding for brain tumour research are adequate. The response failed to address the serious concerns raised by the petition: the lack of progress in survival rates for brain tumours; the burden of the disease, particularly the fact that it is responsible for the highest number of life years lost compared with other cancers; and the impact on quality of life for those who do survive. We recommend that the Government gives a clear statement of whether it thinks funding levels are adequate and, if not, what it will do to ensure that funding for brain tumour research increases. (Paragraph 71)

Government response

7.We heard evidence about the barriers that may be preventing increased investment in brain tumour research. Historical funding problems for research into brain tumours and lack of leadership from successive governments in this area appears to have left a gap in the research workforce within the UK; in particular it is increasingly difficult to recruit PhD students and those who complete their PhD often have to change specialisms or work overseas. An absence of co-ordination and awareness has impeded collection of tissue samples, making fundamental research into different tumour types extremely difficult. Coordinated and adequate tissue collection, a quality workforce and ability to get fundamental ‘blue sky’ research applications approved could significantly improve progress for brain tumours. The Government needs to take a leading role in tackling these systemic problems, to unlock the potential for investment in brain tumour research to be increased. (Paragraph 88)

8.The Government should examine the evidence the Committee has taken and consider what action it can take to address the barriers to brain tumour research described by expert witnesses. In particular:

Government response

9.The Committee welcomes the recent commitments by both Cancer Research UK and Children with Cancer to prioritise brain tumours as a cancer of ‘unmet need’. Nevertheless, responsibility for ensuring that gaps in research funding are filled cannot rest solely with the voluntary sector. The Government must take responsibility for identifying unmet needs in research funding and taking action to rectify them. If the Government showed additional leadership on brain tumour research funding, other institutions and organisations would follow. (Paragraph 100)

10.The Government should not leave the prioritisation of research funding only to the voluntary sector. It should consider the burden of disease from brain tumours and take a more active role in setting priorities for brain tumour research funding. (Paragraph 101)

11.The Government must ensure greater oversight of research funding to ensure that it is able to identify, and if appropriate take steps to address, any gaps in funding. (Paragraph 102)

12.Brain tumours are the biggest cancer killer of children and young people. In terms of the number of life years lost, it is the most fatal of all cancers. The unique position of the brain has a huge impact on treatment and quality of life for patients. Its classification as a rare cancer conceals the serious societal impact that brain tumours have. Current levels of funding for brain tumour research are not commensurate with the burden of the disease. The Government should take a greater lead in ensuring that this burden is taken into account when research funding is prioritised. (Paragraph 111)

13.The Government should set out clear criteria for research bodies to follow when prioritising funding needs. In doing so, it should consider whether it would be appropriate for these criteria to take into account the burden of disease, particularly numbers of life years lost; survival rates, and in particular an absence of improvement in survival rates; and historic underfunding. (Paragraph 112)

Government response

14.The Government should ensure that statistics of secondary brain tumours are adequately recorded so that there is a clear picture of incidences and survival rates for brain tumours. (Paragraph 113)

Government response

15.It is unclear who is responsible for making the decision on funding for non-therapeutic drugs. This could be a wider administrative problem which could be delaying the potential benefits of non-therapeutic drugs for patients in the UK (Paragraph 115)

16.The Government should ensure that a decision is made about the use of PharmaMar linolenic acid. It should clarify the procedures for applying for the use of non-therapeutic drugs on the NHS and investigate whether this is a wider administrative problem which could be affecting the availability of these drugs for patients in the UK. (Paragraph 116)

Government response

17.For too long, funding for brain tumour research has been inadequate and not given sufficient priority. Britain has dedicated researchers in this area but is losing young, talented people because they are unable to access research funding. The country is losing the chance to be a world leader in this area and is letting down patients and their families. (Paragraph 117)

18.The Committee has heard throughout this inquiry that patients with brain tumours are failed at every stage – from diagnosis and treatment to research funding. There has been little improvement in the prognosis for brain tumour patients over the last 30 years. Brain tumours are often considered to be rare, but they are the biggest cancer killer of children and the most fatal cancer in terms of life years lost – and the incidence of brain tumours is on the rise. The number of life years lost ought to be a major factor in allocating research funding, but it is not given sufficient consideration. Where there has been significant investment into research, the outcomes for sufferers of other cancers, such as breast cancer and leukaemia, have improved dramatically. No one who took part in this inquiry wanted funding to be taken away from other cancers. What they wanted was an equal chance for some progress. (Paragraph 118)

19.Funding for site-specific brain tumour research comes mostly from the voluntary sector. Charities have done incredible work to fund brain tumour research and we commend them for that. However, they face difficulties in fundraising, not least because of a lack of public awareness. The Government must not leave charities to tackle this devastating disease alone. (Paragraph 119)

20.Sole responsibility for deciding on priorities for medical research and for identifying diseases with unmet need should not be left to the voluntary sector. The Government could and should take a greater lead: by playing a role in identifying gaps in funding, by setting priorities for research and by supporting the development of the research workforce required to give those suffering with a brain tumour some hope for the future. (Paragraph 120)

21.Maria Lester: “For too long fundraising has been driven by the cancer community and the Government must step up and invest its fair share. There is no time to waste. It is too late to save my little brother and I will have to live with that loss for the rest of my days, but with improved funding just think how many other brothers, sisters, fathers, mothers, friends and children could still be saved. (Paragraph 121)

Government response





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15 June 2016