APPENDIX 18
Memorandum submitted by The Earl Baldwin
of Bewdley
INTRODUCTION
1. I write in a personal capacity, although I
chair the Parliamentary Group for Alternative and Complementary
Medicine. Since retiring from the world of education I have taken
a close interest in non-conventional healthcare, which has included
much personal experience, and keep up with the mainstream medical
press in areas (such as cancer) which involve the interface between
orthodox and unorthodox treatment. I am currently a member of
the House of Lords Select Committee investigating complementary
and alternative medicine (CAM) under the chairmanship of Lord
Walton of Detchant. I also write from close personal experience
of cancer in the family. Although I believe that much could be
done to improve our understanding of the causes and hence prevention
of cancer, particularly on the environmental front, my focus in
this submission is on the need for genuine innovation in research
into the treatment of the disease.
2. Although strict comparisons are difficult
the figures appear to show that this country lags behind other
industrialised countries in its success with cancer. The focus
of the Committee's inquiry is chiefly on organisational matters,
and there is little doubt that improvement on this front (eg by
providing more oncologists) would reduce the mortality statistics.
This more obvious and, to the medical community, less threatening
emphasis hides a basic failure in research which no amount of
structural rearrangement will correct. Several of the lines of
inquiry in your call for evidence have a bearing on whether a
more innovative attitude to the problem will meet with success
or obstruction.
BACKGROUND
3. As a starting point it is important to
recognise where we are now in terms of cancer research. It is
an area where, because of conflicting information and agendas,
it is not always easy to be clear. The media paint a picture of
almost constant breakthroughs. This is what interests reporters,
and what the public likes to hear. Medical journalists, however,
are less critical than their counterparts in other fields, and
most of their information comes from the cancer charities, who
need to strike the right balance between hope and fear in attracting
the funds they need for research, and pharmaceutical companies
who have a strong interest in promoting their treatments.
4. The more dispassionate elements of the
mainstream medical press tell a different story. Bailar and Smith,
in a landmark survey of the results of treatment since the U.S.
Cancer Act of 1971, published in the New England Journal of
Medicine in 1986 and updated in 19972, declare the War on
Cancer to be "a qualified failure": ". . . we are
losing the war against cancer, notwithstanding progress against
several uncommon forms of the disease . . ." (1986); "
. . . we see little reason to change that conclusion"; "age-adjusted
rates of death due to cancer are now barely declining"; ".
. . present . . . arguments are similar in tone and rhetoric to
those of decades past . . . prudence requires a sceptical view
of the tacit assumption that marvellous new treatments for cancer
are just waiting to be discovered" (1997).
5. The British journal The Lancet,
in contrast to the medical researchers themselves who tend to
be understandably optimistic about their current lines of research,
has often taken a sceptical stance, questioning in the mid-1990s
whether "more of the same" was the best recipe for continuing
research, encouraging co-operation with unorthodox cancer therapists,
and in an editorial on 15 January this year (Overoptimism about
cancer") taking to task the latest upbeat pronouncements
of the major charities with the pertinent comments that the War
on Cancer "has not led to a substantial decline in overall
mortality" and that "Such confidence will be shattered
when the public starts to see the gap between what is being said
and what is being achieved".
THE PROBLEM
6. It is against this recognition of the
relative lack of success of a generation and more of mainstream
research, despite the input of many billions of dollars, that
one is entitled to ask whether "more of the same" is
indeed the right way forward. (Researchers may argue that microbiological
and gene therapy approaches are not more of the same; but they
remain variations on a familiar theme, mostly drugs-based, firmly
within the paradigm of targeting tumours, usually by focusing
on ever smaller parts of the human organism, and are "reductionist"
rather than "holistic" in concept.)
7. Bearing in mind what would be the response
of, say, shareholders to a board of directors responsible for
results of this kind, let alone football clubs to unsuccessful
managers, it is worrying that there is so little genuine accountability
in medical research. When, in the words of American science policy
analyst Daniel Greenberg, public support is sustained "by
conveying a picture of an immensely difficult problem that will
slowly yield if we spend on it and work at it", there is
little prospect of challenge by a public that still sees its nearest
and dearest succumb to cancer in large numbers, but lacks the
knowledge and confidence to question the wisdom of the experts.
These experts are not likely to press for change to the status
quo, and indeed some—from the larger institutions—have
recently urged yet greater concentration of research effort within
the existing orthodox centres of excellence. Meanwhile genuinely
innovative avenues are effectively closed off.
POSSIBLE SOLUTIONS
8. The question becomes, what other research
avenues might be explored with any reasonable chance of success.
This submission is directed towards approaches within CAM, on
which very little work has been done in this country. In 1990
the Office of Technology Assessment of the US Congress produced
Unconventional Cancer Treatments, a report which described
a range of treatments for which successes had been claimed, under
the headings Behavioural and Psychological, Dietary, Herbal, Pharmacologic
and Biologic, and Immuno-Augmentative. It came to no conclusions
about possible efficacy, for the reason that good scientific research
in the area is largely absent, a result of the lack of funding
and research expertise and infrastucture within the CAM community,
and lack of interest, if not actual hostility, from the mainstream.
At present there are only case histories to go on, over several
decades, supplemented by some fairly limited studies. But from
pointers of this kind many medical advances have historically
sprung.
9. What is significant is that most of these
therapies come at cancer from original angles (original, that
is, in terms of the now dominant Western medical approach with
its technological basis supported by images of warfare). The mind/body
therapies work on the premise that the psyche and emotions can
influence the course of disease, and they draw growing support
from the recent study of psychoneuroimmunology. Dietary treatments
find much of their rationale in the substantial literature of
nutritional medicine, which still suffers from low status in the
medical world and is largely unread by oncologists. Herbs need
no explanation, beyond the fact that despite long and promising
traditions across many cultures most of them remain unexplored
by science. All these approaches have interesting stories to tell
of successes with responsible practitioners, often with cancers
which have gone too far for the mainstream to treat except palliatively.
Yet they are still regarded, as recovered patients frequently
testify, with at best a lack of curiosity and at worse a hostility
which are surprising, as well being as the antithesis of good
science.
10. In August 1998 The Lancet estimated
that one third of cancer patients used one or more forms of CAM.
While some, like aromatherapy, are clearly palliative, it needs
to be recognised that others are being used seriously in the search
of a cure. When patients are using these treatments already, there
is a strong argument that those who are capable of doing sound
research should be doing so in order to assess the efficacy and
safety of what large numbers of people are doing. Considerations
of private and public medicine should be secondary to the urgent
need to discover promising treatments of wider application. In
the United States such work is now under way with official NIH
funding.
OBJECTIONS
11. In my experience the unwillingness of
orthodox medical scientists to get into this area comes, not from
hard evidence of which there is little either way, but from deeply
held beliefs. The changing culture towards CAM has not yet extended
to cancer or AIDS, where the belief is still that questions of
cure should be left to the orthodox camp. I fear that the public
is being short-changed by this. The argument about giving false
hope to vulnerable patients cuts both ways. The consultant who
assured me that "if there were an `alternative' cure for
cancer we would all be using it" was ignorant of the sociological
forces which shape the way in which institutions act and see their
role, and keep outsiders outside. The wearing of white coats is
not yet proof against human nature.
12. There is a perception, fuelled by such
beliefs, that a number of CAM treatments for cancer have been
investigated and disproved. The events surrounding the study of
Bristol Cancer Help Centre patients in 19904 gives warning of
some of the dangers in this area, when a press conference was
given in advance of a published interim paper which was claimed
to show that Bristol patients died much sooner than controls.
The "grim satisfaction" at this result expressed by
one well-known medical journalist was characteristic of the general
reaction of medical scientists, before the serious flaws in the
study were pointed out and the findings discredited.
13. In The Cancer Survivors5 Judith
Glassman, no particular friend of unorthodoxy, wrote of her investigations
into those who had done well against the odds, of their attitudes,
and of the treatments they used. With every charge that a therapy
had been disproved she found a story of official prejudice accompanied
by a failure to do proper trials, the better known examples being
Cameron & Pauling's vitamin C treatment, Laetrile, and notoriously
Dr Josef Issels where the editor of New Scientist spoke
of the "vicious intolerance of an unorthodox outsider".
The author was unable, for example, to reconcile the official
finding that all Issels' recovered patients had been wrongly diagnosed
with the assurance she had received from oncologists that metastasised
cancer was virtually impossible to misdiagnose. The American Cancer
Society's "Unproven Methods" list was itself largely
a collection of paraphrases of unpublished quotations from doctors'
letters. Doctors criticised the "starvation diets" of
the nutritional therapists without any idea of what they contained.
The picture that emerged was of an unwillingness to believe that
anybody outside the recognised institutions could have anything
serious to say about cancer.
THE FUTURE
14. Medicine has not been kind to its innovators,
from Harvey who discovered the circulation of the blood, to Semmelweis
who promoted antisepsis on the wards, and beyond. Yet true innovation
was never more needed, not only because of the burden of chronic
disease despite massive expenditure on healthcare and research,
but also because of the latter's unaffordability if medical inflation
driven by technological advances continues at around 10 per cent.
15. Furthermore many patients want a different
kind of medicine, which can produce results without the often
devastating side-effects of orthodox treatment which themselves
add greatly to the human and financial costs of modern healthcare.
Although I hold a brief for complementary medicine, which with
Gerson, Kelley, Hoxsey, Issels, Livingston and others has claimed
many successes with cancer, there are avenues being explored by
mainstream researchers (eg hyperthermia, immune stimulation) which
deserve more attention than they have received. It is surely time
to recognise that aggressive, high-technology treatment has brought
limited success outside the world of childhood cancers which account
for less than half a percent of all cases, and has virtually monopolised
resources and thinking for too long.
16. If this is right it has a number of
implications for the structures which could support such a broadening
of focus. Resources would need to be found for the active pursuit
of therapies with a promising background of case histories, working
in conjunction with those who are familiar with the field, and
if need be crossing national boundaries. It is no longer enough
to wait passively for research to emerge from poorly equipped
therapy bodies. If there are to be centres of excellence, or a
National Cancer Institute, one of these might be a home for this
work. If the Committee were to recognise publicly that not all
advances in this field need involve new drugs, and that it may
be necessary to create some distance from the pharmaceutical agenda
if new approaches are to prosper and get funding, that in itself
would be an advance. Nothing in organisation, co-ordination, or
regulatory régimes should be allowed to stand in the way
of needed innovation.
17. The encouragement of even greater lay
participation on committees on all aspects of cancer research
could be a catalyst for changed attitudes, which is where everything
must begin. In 1995 the British Medical Journal argued
that "patients should help to decide which research is conducted,
help to plan the research and interpret the data"; two more
recent comments on this theme are that "if outcome measures
are not relevant to patients why should they bother to take part
in clinical trials", and "consumer involvement will
greatly enhance the overall relevance of clinical research"6.
18. All this will be uncomfortable and challenging
for some very powerful institutions. The question is whether the
comfort of the medical profession, and for that matter the drugs
industry, should take precedence over normal concerns about results
and accountability for them, in an area of literally vital importance
to patients whose priorities have for some time been moving out
of line with what these institutions are offering them. If doctors
and their treatments exist for patients and not vice versa, the
answer should be clear.
9 March 2000
REFERENCES
1 Bailar J C III, Smith E M. Progress
against cancer? N Engl J Med 1986; 314: 1226-32.
2 Bailar J C III, Gornik HL. Cancer undefeated.N
Engl J Med 1997; 336: 1569-74.
3 Cited in Sharon Batt, Patient No More:
the Politics of Breast Cancer,Scarlet Press 1994, pp.266-7.
4 Bagenal F S, Easton D F, Harris E, Chilvers
C E D, McElwain, T J. Survival of patients with breast cancer
attending Bristol Cancer Help Centre Lancet 1990;336: 606-10.
5 The Dial Press, New York 1983. Ms Glassman
is a medical journalist.
6 BMJ 995; 310:1277-78.BMJ1999;
319: 724-25. BMJ 2000; 320: 380-81.
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