Top‐up Payments for Expensive Cancer Drugs: Rationing, Fairness and the NHS

Date01 May 2010
Published date01 May 2010
DOIhttp://doi.org/10.1111/j.1468-2230.2010.00801.x
Top-up Payments for Expensive Cancer Drugs:
Rationing, Fairness and the NHS
Emily Jackson
n
This article examines the implications for patient care,and for the future of rationing within the
NHS, of the recent decision to permit NHS patients to supplement their care by paying for med-
icines ç mainly expensive new cancer drugs ç which are not available within the NHS. The
starting point is the recommendations of the Richards’ Report and their implementation
through new guidance issued by the Department of Health and the National Institute for Health
and Clin ical Excellence. Practical chal lenges aris e from the insistence upon the ‘separate’ delivery
of self-funded medicines, and more£exible cost-e¡ectiveness thresholds for end of life medicines
may haverepercussions for other patients.Whi le undoubtedlypart of the trend towards explicit
rationing,top-up fees might also represent a signi¢cant step towardsregarding the NHS as a core,
basic service. Finally, the issue of top-up fees i s located within the broader context of current
cancer research priorities and persisting health inequalities.
INTRODUCTION
Does the National Health Service Act, which set up the NHS as a free and com-
prehensive service shortly after the end of the second world war,
1
allow NHS
hospital patients to pay for medicines which are not available within the NHS,
while retainingtheir right to receive the res tof t heir care free of charge? For many
years, the position was uncertain, and di¡erent Primary Care Trusts (PCTs)
adopted di¡erent interpretations of the rule, promulgated in a Department of
Health Code of Practice, that it is not possible to be both an NHS and a private
patientat the same time.
2
While the statute itself has not been amended, the Code
has, and following new guidance issued in March 2009,
3
the answer to the ques-
tion just posed would now seem to be a heavily quali¢ed‘yes’.
There are, it must be admitted, compelling arguments both for and against what
havebecome known as ‘top-up payments’for expensivemedicines. On the one hand,
it seems instinctively unfair to withholdthe NHS care they would otherwise receive
from patients, just because they have opted to pay for a treatment which the NHS
will not fund.
4
If an NHS inpatient paid to be visited by a spiritual counsellor, they
n
London School of Economics.I am grateful to Richard Ashcroft, OliverQuick and the Modern Law
Review’s two anonymousreviewers for their perceptive comments and suggestions.
1 The National Health Service Act 1946 came into force in 1948.
2The Code ofConduct for Private Practice: Recommended Standards of Practicefor NHS Consultants (Lon-
don: Departmentof Health, 2004) replacedThe Code ofConduct forPrivate Practice: guidancefor NHS
sta¡ (London: Departmentof Health, 2003), which itself replaced Management of privatepractice in
healthservice hospitals in England andWales (London: Department of Health 1986).
3Guidance on NHS patients who wish to pay foradditional privatecare (London: Department of Health,
2009).
4 J.Gubb,‘Shouldpatients be able to pay top-up fees to receive the treatmentthey want? Yes’ (2008)
336 BMJ 1104.
r2010The Author. Journal Compilationr2010 The Modern Law ReviewLimited.
Published by BlackwellPublishing, 9600 Garsington Road,Oxford OX4 2DQ,UK and 350 Main Street, Malden, MA 02148, USA
(2010)73(3) 399^427
would not therebylose their right to NHS care, so it would seem irrational to force
someone out of the NHS because theyhave chosen to pay foran evidence-based and
e¡ective treatment for cancer.The ¢rst principle of the new NHS Constitution for
England, which also contains high-level principles that apply across the UK, is that
‘the NHS provides a comprehensive service, available to all’.
5
Since January 2010,
NHS providers have been under a legal duty to have regard to the Constitution,
and its commitment to universality, which might seem di⁄cult to square with the
exclusion of terminally ill patients, on the grounds that they have paid to receive a
medicine which the NHS has refused to provide.
Yet on the other hand, the NHS was founded on the principles that treatment
should be free at the point of use, and that access should be determined by need
rather than ability to pay.
6
If top-up payments for expensive drugs are permitted,
some NHSpatients will receive better treatment simplybecause they cana¡ord it,
and this looks very like the sort oftwo-tier systemwhich existed before1948, and
which the NHS was intended to replace. Top-up fees for life-prolonging drugs
raise issues for the NHS which are signi¢cantly di¡erent from allowing patients
to payextra for white ¢llings, private bedrooms or aromatherapy. Paying foraes-
thetic preferences, privacy or non-evidence based ‘alternative’ therapies does not
o¡end the founding principles of the NHS inthe same wayas the privatefunding
of a medicine which might keep someone alive.
It is not mypurpose in this article to o¡er a de¢nitive view on the acceptability
or otherwise of top -up payments. In part, this is because I am not sure that a right
or wrong answer exists. If I was a nurse working on an NHS oncology ward, I
would ¢nd the prospect of knowingly giving more e¡ective drugs to my richer
patients troubling. At the same time, I also know that I would not hesitate to spend
thousands of pounds on a drug that might extend the life of someone I love.
Instead of attempting to solve the dilemma top-up paymentsrais efor the NHS, my
intention in this article is to £esh out some of the implications of Mike Richards’report
and recommendations on top-up payments and expensive ‘end of life’ medicines,
7
and
the subsequent guidance issued by the Department of Health and the National Insti-
tute for health and Clinical Excellence (NICE). It could, for example, be argued that
top-up fees for non-NHS funded drugs add a new dimension to the increasing accep-
tance that rationing should now be explicit, rather than implicit. If patients have the
right to supplement their NHS care with unfunded medicines, does the ‘partnership’
model of medical decision-making impose a duty on doctorsto tel l all of their patients,
including tho se who are very poor inde ed, about the availability of drugs which may
prolong their life, but which they will receive only if they can a¡ord them?
The number of immediately a¡ected patients is small, but growing.
8
This is
partly because more of us are living tobe very elderly, thereby increasing the like-
5The NHS Constitution for England (London: Department of Health 2009).On 3rd July 2008, Eng-
land, Scotland, NorthernIreland and Walescommitted to a high-level statement rea⁄rming that
the underlying principles of the NHS across the UK remain the same.
6 Ministry of Health, A NationalHealth Service Cmd 6502 (London: HMSO,1944).
7Improving accessto medicines forNHS patients:a reportfor the Secretaryof Statefor Healthby ProfessorMike
Richards(London: Department of Health, 2008).
8 M. Summerhayesand P. Catchpole,‘Has NICE been nice to cancer?’ (2006) 42 EuropeanJournal of
Cancer 2881^2886.
Top-upPayments for Expensive Cancer Drugs
400 r2010The Author.Journal Compilationr2010 The Modern Law ReviewLimited.
(2010) 73(3) 399^427

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