APPENDIX 28
Memorandum submitted by Breakthrough Breast
Cancer
ABOUT BREAKTHROUGH
BREAST CANCER
Breakthrough Breast Cancer is a charity committed
to fighting breast cancer through research and awareness. Breakthrough
has long been concerned about the organisation and effectiveness
of cancer research funding. Indeed, the charity was originally
established to overcome a perceived shortcoming in the organisation
of cancer research in the UK.
In 1991, when Breakthrough was launched, breast
cancer was a very major health problem in the UK, yet there was
no clear focus or concentration of resources for breast cancer
research. Therefore, Breakthrough's first objective was to establish
the United Kingdom's first dedicated breast cancer research centre,
in partnership with the Institute of Cancer Research. This goal
was achieved in late 1999, when the Breakthrough Toby Robins Breast
Cancer Research Centre was officially opened. This research centre,
which will eventually house up to 80-100 scientists, will be a
focus for multidisciplinary breast cancer research in the UK.
CANCER IS
A MAJOR
HEALTH PROBLEM
IN THE
UK
Breast cancer is still a very serious health
problem in the UK, responsible for more than 1,000 deaths each
month. Unfortunately it is only one of a number of cancers which
affects a large proportion of our society. Cancer claims the lives
of more than 135,000 people in the UK each year1. Almost everyone's
life in the UK is in some way affected by cancer. More than one
third of us will suffer from cancer during our lifetime2. In addition
to those that are directly affected by disease, cancer puts a
heavy burden on patients' families and friends, and on society
in general.
REDUCING THE
CANCER BURDEN
In "Saving Lives: Our Healthier Nation",
the government blueprint for improving the health of UK citizens,
the Government has stated its commitment to reduce the death rate
from cancer in people under 75 years by at least a fifth by 2010—saving
up to 100,000 lives in total3. This is an important start. However,
the development of new methods of prevention, more effective screening
and diagnostic procedures and novel, and more successful treatments
will be required to reduce even further the widespread suffering
caused by cancer.
NEED FOR
CANCER RESEARCH
Cancer Prevention/Reduction of Incidence
Reducing the negative impact of cancer will require
both public health initiatives to prevent or reduce the risk of
cancer in the population, and screening, treatment and care for
those who become affected with disease. Research is the fundamental
cornerstone on which each of these is based. For example, public
health measures geared to preventing or reducing the risk of cancer
must be informed by research into the biology of cancer initiation
and progression and supported by epidemiological studies.
Certainly, there are areas where public health
intervention might be effective today, such as reducing the incidence
of lung cancer or skin cancer by campaigns to reduce tobacco smoking,
or encourage behaviour to minimise sun exposure respectively.
However, there are many common types of cancer, including breast
and prostate cancer, for which modifiable risk factors are largely
unknown, although there is strong evidence that environmental
or dietary factors may be important4. Hence, research into the
causes of these cancers is an absolute prerequisite to effective
public health interventions.
Cancer Treatment
The Government has recently announced increases
in spending for certain areas of cancer treatment. We warmly embrace
all efforts to reduce the mortality and suffering caused by cancer.
However, many of today's treatments are imperfect. While a number
of notable advances have been made in the treatment of certain
cancers over the past 30 years, such as in the treatment of some
types of childhood leukaemia or testicular cancer, the overall
mortality for many common types has not decreased substantially.
The Importance of Basic Research
The primary goal of treatment is to cure disease.
Where this is not possible, treatments should couple prolongation
of life with good quality of life. For many cancers, the most
effective available treatments act to extend life for only a period
of a few months or years. Why is this? Cancer is a very complex
disease, and there are still fundamental gaps in our understanding
of the underlying biology. There are many historical examples
of how an improved understanding of the aetiology of a disease
or condition has led directly to highly effective treatment or
cure. Clearly, fundamental advances must still be made in understanding
how cells become cancerous, how they can be distinguished from
their normal cellular counterparts and how tumour cells spread
to other parts of the body, before more effective anti-cancer
treatments can be developed. These can only be made through basic
laboratory research.
The Importance of Developing New Screening and
Diagnostic Procedures
There is a large body of evidence suggesting
that early detection is a crucial factor in improving outcomes
for people with cancer. Non-invasive, low cost screening procedures
and diagnostic tests must be developed for early detection of
disease. These can only be developed through research.
The Importance of Clinical Research
Clinicians in the UK are moving rapidly towards
the use of evidence-based medicine in informing their clinical
practice. The rapidly increasing number of government guidelines
and recommendations to clinicians and health authorities, including
recommendations by the National Institute for Clinical Excellence
(NICE), are primarily based on published reports of clinical trials,
supplemented where necessary by expert opinion. It is self-evident
that to gain this evidence, large, high-quality clinical trails
must be organised and funded.
The Importance of Other Types of Research
Progress in cancer prevention, diagnosis and
treatment is not made solely through advances in the biomedical
sciences but is also dependent on advances in disciplines such
as psychology, sociology, economics, health services and policy
research, epidemiology, information sciences, community development
and engineering. A wide base of research activity is necessary
to support improvements in cancer control. Thus, to make real
strides in cancer control, a wide variety of evidence must be
generated, collected and effectively integrated.
CANCER RESEARCH
FUNDING IN
THE UK
Excluding pharmaceutical companies, basic and
clinical cancer research in the UK is funded by a multitude of
different organisations. Since many different types of research
can be important in the fight against cancer, it is difficult
to clearly define the limits of what should be classified as "cancer
research". However, funders can be roughly divided into three
main groups on the basis of their reported level of cancer research
funding5.
£20,000,000/year Imperial Cancer Research
Fund, Cancer Research Campaign
£1,000,000-£20,000,000/year Medical
Research Council, Leukaemia Research Fund , Department of Health,
Scottish Office, Ludwig Institute for Cancer Research, Institute
of Cancer Research, Yorkshire Cancer Research, Association for
International Cancer Research, Breakthrough Breast Cancer, Marie
Curie Cancer Care, Tenovus
£1,000,000/year many national and regional
organisations
In total, approximately £150-200,000,000/year
of cancer research funding is provided by government and charitable
sectors, and a roughly equal amount of research is funded by pharmaceutical
companies in the UK.
IS CANCER
FUNDING IN
THE UK ADEQUATE?
The answer to this question depends very much
on one's point of reference. Has funding been sufficient to make
cancer a disease of the past? Obviously not. Are all worthwhile
proposed cancer research projects being funded at present in the
UK? Certainly not. Breakthrough gets a number of requests for
funding from scientists working in a diversity of breast cancer
fields. At present, we must reluctantly refuse these requests
due to a lack of sufficient resources. This difficulty is certainly
not limited to Breakthrough; a major complaint among scientists
and clinical researchers is that only a fraction of top-rated
research proposals are presently being funded by any UK organisation.
How does funding in the UK compare to that in
other countries? The largest volume of cancer research is currently
funded in the United States. The largest funder is the National
Cancer Institute, with an estimated expenditure of $2.9 billion
in 1999. Also in the US, the Department of Defence dedicated approximately
$195 million to breast, prostate and ovarian cancer research,
while major cancer charities funded more than $200 million of
cancer research. In addition to this, the pharmaceutical industry
estimates that it spent $4.8 billion in the category "neoplastic
diseases and endocrine and metabolic disorders", a substantial
portion of which includes cancer research.
In comparison, charity funded cancer research
in the UK in on a par, or even higher than in the US (certainly
on a per capita basis). This is true even though The Wellcome
Trust, by far the major charity funder of biomedical research
in the UK (>£400,000,000/year), specifically excludes
the funding of cancer research, as a matter of policy. The biggest
factor for the difference in research expenditures is the level
of government funded cancer research. While there may be some
disagreement about the precise limits of what constitutes cancer
research, there is little doubt that the United States Government's
per capita expenditure for cancer research is many fold greater
than that of the UK6.
There is a wide range of cancer research funding
in other countries, although certain countries have recognised
the importance of national funding of cancer research7. Countries
that fund more research have a strong expectation that new anti-cancer
procedures or technologies will be adopted much faster and more
widely applied. Many advances have led to the creation of new
products and industries, which are important in developing a vigorous,
knowledge-based economy. As well, there are types of research
that are more directly applicable to a country's own citizens
(such as clinical trials where cultural/national differences may
be important).
There is widespread public support for increased
funding of cancer research by the UK Government. For example,
last October, in the campaign "Kiss Goodbye to Breast Cancer",
Breakthrough presented the Prime Minister with a petition signed
by 655,000 UK citizens calling on the Government to triple funding
of breast cancer research to match charity expenditure £1
per £1.
CO-ORDINATION
OF CANCER
RESEARCH IN
THE UK
In most other countries in which significant
amounts of biomedical research is funded, the Government is the
major funder of non-pharmaceutical cancer research. In the UK,
the major funders of cancer research are charities. The fact that
charities fund the majority of non-pharmaceutical cancer research
does have a profound effect on the co-ordination of cancer research
in the UK.
Charity funding of research does have a number
of potential advantages. By supporting specific charities, people
have more choice to support the enterprises that they feel might
be most effective in the fight against cancer. Indeed, Breakthrough's
relatively rapid success in attaining its first goal of building
a research centre specifically devoted to breast cancer research,
is a clear example of how a new approach to fighting cancer can
bring in new supporters.
However, a consequence of having multiple organisations
with different visions, that at least in part rely on the generous
support of a finite population, is that effective co-ordination
of research activities is inherently more difficult than if research
was overwhelmingly supported by a single organisation.
At present, the UK Co-ordinating Committee for
Cancer Research (UKCCCR) is the primary body responsible for co-ordinating
cancer research; Breakthrough has recently been accepted as an
associate member on this committee. In practice, the UKCCCR operates
primarily as a forum to co-ordinate the funding of clinical trials
among major funders. Since it does not have its own budget other
than for funding administrative costs, it can only act in cases
where there is agreement between the major funders. The UKCCCR
does not have an effective role in co-ordinating research other
than a subset of clinical trials. As well, the UKCCCR is not overly
inclusive in its activities, many cancer organisations (especially
smaller charities) are not represented.
IS THERE
A NEED
FOR A
UK NATIONAL CANCER
INSTITUTE?
The National Cancer Institute in the United
States is often cited as a crucial organisation for the co-ordination
and funding of cancer research in the United States. It has a
major strategic role, in developing national strategies for co-ordinating
cancer research and treatment. It is also the largest funder of
cancer research in the US, funding its own internal research institute
(approx $443 million/year), external research programmes (approx
$1.56 billion/year) and infrastructure for clinical trials (approx
$153 million/year)8.
Many other countries have their own scaled down
versions of national cancer institutes, which often have combined
responsibilities for development of national anti-cancer strategies
and funding or performing cancer research.
What would be the role of a UK national cancer
institute? Certainly a new, well-funded institute could have a
major impact on cancer research and treatment in the UK. This
was the view taken by Breakthrough in setting up its breast cancer
research centre. Ideally, if a national cancer institute were
being set up in the UK, it would be a centre supporting a wide
continuum of integrated laboratory, translational and clinical
research. However, to create an institute that would be internationally
renowned in a range of cancer fields would require a significant
amount of new government expenditure. There are, at present, a
number of effective cancer research centres in the UK, although
none of these fully satisfy the above ideal. However, if a new
national cancer institute was not uniquely structured to carry
out integrated laboratory and clinical research, a more prudent
approach might be to improve the funding of existing centres.
The effectiveness of the US NCI is in large
part due to the fact that it is the largest funder of cancer research
in other US institutions, supports a wide range of comprehensive
cancer centres and is a major funder of clinical trials. Would
the UK NCI have a similar role? To do so would require a many-fold
increase in government expenditure for cancer research. In the
absence of widespread funding support, a national cancer institute
might have limited influence on a national basis.
In Breakthrough's own consultation of scientists,
clinical researchers and supporters, there was widespread support
for the creation of an independent organisation for the development
of a national anti-cancer strategy and co-ordination of research
(ie avoiding duplication/realisation of synergies through interaction
and collaboration). Other countries, including the US, Canada
and Australia, have developed national anti-cancer strategies
to facilitate cancer-control planning and the selection of funding
priorities for cancer research and program-delivery activities,
using input from a wide of variety of sources. The responsibility
for co-ordinationg all aspects of cancer control by a single entity
is based on the notion that cancer research, screening and treatment
are, in reality, highly integrated and can only be separated by
artificial barriers. Thus, they are most effectively dealt with
in concert.
A UK organisation with a responsibility for
overseeing all aspects of cancer control, including the co-ordination
of cancer research, screening and treatment, might prove valuable,
if sufficiently well-resourced. Breakthrough would strongly endorse
the position that such an organisation be highly inclusive, incorporating
a wide variety of views including charities, government agencies,
pharmaceutical companies, cancer care organisations and hospices,
and especially those of patients and their representatives. Such
an organisation might also act as a focus for international liaison
and collaboration.
OTHER BARRIERS
TO EFFECTIVE
CANCER RESEARCH
IN THE
UK
Even if there were greater funding for cancer
research and an effective organisation for the co-ordination of
cancer control in the UK, a number of other obstacles to successful
cancer research in the UK have been brought to our attention.
For example, there are, at present, multiple
barriers to translating basic research into clinical practice
and these operate at many levels. There is relatively little overlap
in training of scientists and clinicians in the UK and highly
regarded combined programs (like MD/Ph.D programs in the US or
Canada) are not widely available. Thus, there are few people who
are well trained in both basic laboratory science and medicine,
despite the fact that these people might be most effective in
bridging the gap between basic and clinical research. Those that
do seek dual qualification, by taking time out to get additional
qualification, may be penalised in their career path. New ways
must be found to encourage multidisciplinary training and the
development of viable career paths for broadly trained personnel.
For those clinicians that do participate in
research, often very little time is available due to the constraints
imposed by their clinical and administrative workload. The lack
of trained oncologists is a very serious problem in the UK; the
ratio of oncologists to patients in the UK is lower than all but
the poorest European countries. This situation limits the pool
of clinicians able to carry out research, in addition to its negative
effect on cancer treatment.
In addition, carrying out clinical trials has
costs in terms of both time and resources, which may be inadequately
provided for by health authorities. Perhaps NHS research and development
funds might be used to supplement the costs of clinical trials.
Indeed, in 1995 the advisory group to the NHS cancer programme
explicitly listed the need to maintain an infrastructure for the
prosecution of clinical trials as a priority9.
For many new methods of diagnosis and treatment,
there is a need to progress laboratory discoveries/inventions
into the commercial arena in order to derive clinical benefit.
This requires effective patenting strategies technology transfer
programmes as well as access to investment/venture capital for
start-up companies in order to realise the benefits of academic
research. In many cases, the above culture is not well established
and the requirements are not in place.
Finally, it must be recognised that cancer research
is an international endeavour, and that many research findings
of clinical importance have been, and will be made in other countries.
Effective translation of these findings into clinical practice
in the UK will require effective methods of international liaison
and collaboration and sufficient resources to allow uptake of
new technologies.
SUMMARY AND
RECOMMENDATIONS
Cancer has a devastating impact on health in
the UK. More than one-third of all people in the UK will eventually
be diagnosed with cancer; this will affect their family and friends.
If we are to reduce the impact of these deadly diseases in the
future, we must act now in an effective and aggressive fashion.
Therefore we recommend:
1. That government funding for cancer research
is dramatically increased to correspond to the level of impact
that cancer has on people in the UK. The UK Government should
aspire to fund similar per capita levels of cancer research as
major funding nations such as the United States.
2. That the Government works to create an
independent national organisation, with an international outlook,
to develop a co-ordinated programme of cancer control, including
laboratory and clinical research, screening, treatment and care.
3. That the Government works to remove barriers
to effective cancer research, including encouraging combined programmes
of scientific and medical training, increasing the number of trained
oncologists, creating a suitable environment for the commercialisation
of new discoveries where appropriate, and assisting in providing
a suitable infrastructure for clinical trials.
9 March 2000
REFERENCES
1 WHO Databank 1997 figures
2 Saving Lives: Our Healthier Nation
3 Saving Lives: Our Healthier Nation
4 Armstrong BK, Cancer Prevention—Environment.
Cancer Strategies for the New Millennium, WHO, 19-20 October 1998
5 Figures based on AMRC reports, UKCCCR
reports, House of Commons and Lords Hansard, and Waxman J. and
I. Gibson. (1998) Britain needs a national cancer institute BMJ
317:1397.
6 For example, US government expenditure
on research projects/clinical trails is approx. $2,200 million
(£1,400 million) via the NCI and approx. $200 million (£120
million) through the Department of Defence. UK expenditure has
been estimated as approx. £15 million via the MRC, and approx.
£20 million via other government bodies, while the UK population
is approximately one-fifth of the US population. Thus, using these
figures, the US government per capita expenditure on cancer research
is approximately eight times greater than that of the UK government,
(((1400+120)X0.2)/(15+20)). While precise levels of expenditure
for cancer research are debatable, due to the difficulty of precisely
defining the limits of "cancer research", it is clear
that US government funding is a multiple of that of the UK Government.
7 Unlocking Our Future: Toward a New National
Science Policy (1998) A Report to Congress by the House Committee
on Science, 24 September, 1998; The need to create a cancer institute
with the Canadian institutes for health research (1999) position
paper submitted by the Canadian Cancer Society and The National
Cancer Institute of Canada; Researching for Health (1995) National
Health and Medical Research Council, Australia
8 Figures from 1999 in the nation's investment
in cancer research: a budget proposal for fiscal 2000 (2000) Nation
Cancer Institute, United States
9 R&D priorities in cancer: Report to
the NHS Central Research and Development Committee, 1995.
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