World Report
Doctors lobby for better chronic pain management
This online publication has been
corrected. The corrected version
first appeared at thelancet.com
on January 26, 2017
For the Chief Medical Officer’s
2008 annual report see http://
webarchive.nationalarchives.
gov.uk/20130107105354/http://
www.dh.gov.uk/en/
Publicationsandstatistics/
Publications/AnnualReports/
DH_096206
For the US national pain
strategy see https://iprcc.nih.
gov/National_Pain_Strategy/
NPS_Main.htm
For the 2011 Institute of
Medicine report on pain see
http://www.nationalacademies.
org/hmd/Reports/2011/
Relieving-Pain-in-America-A-
Blueprint-for-Transforming-
Prevention-Care-Education-
Research/Report-Brief.aspx
Science Photo Library
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Several campaigns and initiatives are underway in Europe and the USA by doctors hoping to
improve services and care for patients with chronic pain. Tatum Anderson reports.
In a bid to get politicians to take
chronic pain seriously, pain specialists
are behind two Early Day Motions
(EDM) submitted for debate in the
UK Parliament.
EDM 195 calls for chronic pain
to be recognised as a disease in its
own right. That might substantially
improve treatments for people
with chronic pain within the
National Health Service (NHS),
says Frances Cole, a general
practitioner who specialises in pain
rehabilitation and helped to develop
the EDM.
Currently, patients are treated in
a way that does not recognise the
complex nature of the disease, so
there are few decent care pathways
within the NHS. “Medics are
operating on a biomedical model,
which is completely out of date”, she
said. “We are using inappropriate
approaches and it’s chaotic. That is
because pain is not recognised.”
People with persistent pain
typically see general practitioners
five times more than any other
group of patient and are often on a
constant roundabout of consultant
appointments, tests, and treatments
with little effect for years. Pain
specialists say colleagues in other
disciplines treat disorders that the
pain accompanies and hope the
pain will go away, when it may
never do so.
“...patients are treated in a way
that does not recognise the
complex nature of the disease,
so there are few decent care
pathways within the NHS.”
This situation occurs because
unlike acute pain, a normal biological
warning system, chronic pain is a
complex interplay between the brain
and malfunctioning nerve pathways
and can continue long after
normal tissue healing time—more
than 3 months. It occurs after around
a seventh of surgeries, a seventh of
accidents, and even without injury, as
is often the case in fibromyalgia. The
Chief Medical Officer’s annual report
for 2008 said pain can be so severe
that a quarter of people with it lose
their jobs because of their ill health.
And ironically, alongside campaigns
for better global access to opioid
drugs for acute, postoperative,
or end-of-life pain, chronic pain
patients are being prescribed high
quantities of opioid drugs without
regular checks.
That’s why EDM 555, launched
last month, has called for annual
opioid drug check-ups among other
things. The Chronic Pain Policy
Coalition, a group of Royal Colleges,
disease societies, and pain specialists,
which worked on EDM 555, is also
expected to reveal this month how
few patients with chronic pain are
regularly checked.
Behind these parliamentary devices
is a movement to get patients with
chronic pain away from searching for
cures and into rehabilitation. Pain
management teams, comprising
doctors, nurses, physiotherapists,
occupational therapists, and
psychologists, can help people with
pain to self-manage their condition
and regain function. But waiting
lists for such clinics can be as long
as 3 years in the UK. “There aren’t
sufficient specialist centres to deal
with this enormous problem. Hence
our lobbying in Parliament”, said
Joanna Zakrzewska, a facial pain
specialist at University College
London Hospitals. Zakrzewska is a
member of the Chronic Pain Policy
Coalition.
Rehabilitation might be cheaper
in the long run she says; reducing
the numbers of people with chronic
pain drawing disability benefits could
compensate for the cost of more pain
management staff and centres.
Global perspective
Lobbying for more focus on chronic
pain is not limited to the UK. A fifth
of all Europeans—100 million—
experience chronic pain. So a European
coalition of pain experts—Societal
Impact of Pain—is lobbying members
of the European Parliament for better
pain management facilities, pathways
back to work and, importantly, training
in pain management for doctors who
may receive just a few hours at medical
school.
And the US Government in March
published a long-awaited national
pain strategy proposing a raft of
federal plans to tackle chronic pain,
including more pain management
services. The strategy is based on
a far-reaching 2011 Institute of
Medicine report, which concluded
that chronic pain should be treated as
a public health problem and can be a
disease in itself.
US efforts have been driven, in
part, to prevent so many Americans
www.thelancet.com Vol 388 December 10, 2016

accidentally overdosing from opioid
pain medication. The Centres for
Disease Control and Prevention in
March recommended that primary
care doctors prescribe fewer opioid
drugs to people with chronic pain.
But importantly, the plans aim to
reduce the economic impact (US$635
billion per year) of having 100 million
people living with chronic pain in
the USA—higher than heart disease,
cancer, and diabetes combined.
Not everyone supports the
argument that chronic pain is a
disease, however. Some experts
believe it is a symptom not a cause,
even if the cause is as yet unknown.
Others believe focusing on it is a
mistake. Rather, recognising that
chronic pain is a long-term condition
to be managed, rather than cured, is
more important, they say.
Others worry that lobbying efforts
might exclude patients with a
specific cause for chronic pain such
as neuropathy, which afflicts many
cancer and diabetic patients, says
Chris Wells, president of the European
Pain Federation, a grouping of pain
health-care workers and researchers.
They should instead focus on
everyone debilitated by persistent
pain, he said.
The Global Burden of Disease 2015
study reveals that chronic pain is a
big contributor to years lived with
disability globally, regionally, and
nationally. Lower back and neck
pain was the leading global cause of
disability in 2015 in most countries.
The contribution of pain
to disability might also be an
underestimate because it does not
count pain associated with other
conditions such as multiple sclerosis,
Parkinson’s disease, shingles, sickle
cell disease, or leprosy. And it may
omit cancer survivors reporting
chronic pain caused by nerve damage
from neurotoxic chemotherapy
drugs, radiotherapy, surgery, or
tumours. Many people with HIV have
peripheral neuropathy too—half
have substantial neuropathy—and
www.thelancet.com Vol 388 December 10, 2016
are not counted, says Andrew Rice, a
neuropathy expert at Imperial College
London.
And the numbers of people with
chronic pain are increasing as
populations age. Rheumatoid and
osteoarthritis neuropathy rates
are rising, as are rates of obesity,
diabetes, cancer, and—in developing
countries—road traffic accidents.
“The pain lobbying movement
might also be missing patient
activists, perhaps too ill and
isolated to campaign.”
But data on the burden of disability
does not always help lobbying efforts,
say proponents. National data on
the economic cost of chronic pain
or a breakdown of figures to reveal
numbers with severe and debilitating,
rather than mild chronic pain, might
better attract the attention of
politicians. But these data are missing
throughout the world. “They don’t
quantify the severity and impact of
pain sufficiently for us to get data that
is useful to inform policy and research
and health-care delivery”, said Rice.
That chronic pain is poorly
represented in the International
Classification of Diseases (ICD) does
not help either, says Winfried Rief of the
University of Marburg, Germany. The
current list—ICD-10—does not contain
crucial entries for chronic cancer pain,
for example. There is inconsistency
too. Chronic pain definitions vary
wildly depending on where in the body
they strike. Some definitions even cite
psychological causes that are unproven.
That inconsistency affects entire
health systems. Countries such as
Australia, Finland, and Germany
rely on the ICD’s precise diagnostic
criteria to identify the compensation
doctors receive for treating particular
conditions. “If there is no chronic
pain diagnosis, there is no way for the
doctor to get some compensation for
an adequate pain treatment”, he said.
And without good diagnostic
classifications, collecting good
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epidemiological data or applying for
research funding on chronic pain,
is extremely difficult too. That is
why Rief, and other members of the
International Association for the
Study of Pain, are working to overhaul
chronic pain diagnoses in the next
version—ICD-11—to be completed
by the next World Health Assembly in
May, 2017, in Geneva.
But despite so much lobbying,
pain strategies and summits,
audits, and even a global human
rights declaration, it is unclear how
the treatment of chronic pain will
improve. There are still no guidance or
quality standards on general chronic
pain by the UK’s National Institute for
Health and Care Excellence or first-line
drugs indicated for neuropathic pain
on the WHO Model Lists of Essential
Medicines.
And perhaps pain is just too
ordinary a part of life to be taken
more seriously; headaches and
backaches do not elicit much
sympathy because everybody has had
them. That they can be debilitating is
poorly understood because chronic
pain is badly explained, even to
patients.
Chronic pain cannot be measured
independently like blood pressure or
temperature either, relying instead
on subjective reports from sufferers.
Many are dismissed as moaners,
malingerers, or told it is all in their
heads. “Two suicide attempts in my
practice have both been patients
[with chronic pain] who’ve been told
to pull themselves together”, said
UCL’s Zakrzewska.
The pain lobbying movement
might also be missing patient
activists, perhaps too ill and isolated
to campaign. Many people also do
not realise they have a recognised
chronic condition.
Effective pain relief
Millions of people do not have access
to opioid-based analgesics. But even
populations previously thought to be
receiving adequate amounts might
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be consuming too little for effective
pain relief.
Adequate consumption is
peculiarly described as 200 defined
doses for statistical purposes
(S-DDD) per million inhabitants per
day. A statistical threshold rather
than a clinical dose, it is equivalent
to 7·3 mg of morphine per person
per year.
Describing consumption has helped
identify countries providing virtually
no access. Half of WHO’s African Region
consume under five S-DDD per million
inhabitants per day, for example. But
the origins of the 200 S-DDD threshold
are a mystery. The threshold comes
from International Narcotics Control
Board (INCB), an independent and
quasi-judicial body that monitors
countries’ implementation of three
UN drug conventions.
In 2010, it classed countries
con suming opioid analgesics
in quantities between 100 and
200 S-DDD per million inhabitants
per day as inadequate and those equal
or below 100 S-DDD, very inadequate
(INCB has never stated exactly what
adequacy is, but WHO and others
have assumed that 200 S-DDD or
above must, logically, be adequate).
But pain experts cite substantial
problems with the thresholds,
including the fact that the INCB has
never published its methods; an
organisation that also oversees drug
control (although three members are
nominated by WHO) has set the limit;
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and WHO uses this figure without
evidence.
Diederik Lohman, associate director
at Human Rights Watch, which tracks
access to opioid-based analgesics,
said: “[INCB] have more public health
knowledge now than they have ever
had, but in the end they are not the
agency that has the mandate to
say what is adequate and what is
not adequate. It’s WHO that should
be making those kinds of calls.”
Importantly, countries in and around
the 200 level still have insufficient
pain relief, says Lohman.
“With so many data gaps, it’s
unsurprising that experts differ
over how to calculate adequate
consumption.”
Willem Scholten, a consultant
specialising in medicines and
controlled substances, says low levels
invite complacency. “When setting
the benchmark so low as INCB does,
the INCB tells countries that they
do not need to do anything, while
actually, many of these are suffering
populations”, he said.
INCB rejects criticisms, saying it is
fully committed to improving access
to pain relief and that amounts were
set in the absence of complete data
but gave INCB a chance to directly
challenge countries on access. That
said, a recent appointee to the
INCB board, Richard Mattick of the
University of New South Wales,
Australia, believes the limit is too
low and now wants fellow board-
members to consider developing new
evidence-based adequacy levels.
WHO blames under-resourcing
for not publishing its own level.
Suzanne Hill, the new director of the
WHO Essential Medicines and Health
Products Department, agrees levels
are too low, and that the agency will
revisit them.
The challenge now is to decide
what the adequate consumption
amount should be. That is difficult
because there is so little research
on how different opioid analgesics
are consumed globally. Currently,
researchers tend to use what little
data are available—how much
patients with terminal cancer
and those with AIDS are likely to
consume—and extrapolate.
Even less is known about quantities
other kinds of patients in pain
require—from patients with cancer
who are not terminally ill to those
recovering from surgery. There might
be huge cultural differences that
influence consumption too; Japan’s
consumption is a fraction of Canada’s,
says Mattick.
With so many data gaps, it is
unsurprising that experts differ
over how to calculate adequate
consumption. When he worked
at WHO, Scholten collaborated to
develop an Adequacy of Consumption
Measure (ACM), for instance. It
adjusted for uses of opioid analgesics
beyond palliative care using
consumption data from the world’s
20 richest countries—and is around
30 times higher than the INCB figure—
but was never used by WHO.
Others think the ACM methods
wrongly include high-consuming
countries such as the USA. “If [opioid
drugs] are prescribed by pill mills
in Florida it is counted as regular
prescribing”, said Jim Cleary of the
University of Wisconsin’s Pain and
Policy Studies Group, USA. “How
can we even include them in our
calculations?” His group has proposed
alternative methods to some INCB
members, including ways to calculate
adequacy levels for individual
disorders.
The INCB board, which began its
new session in November, says it
might review thresholds although
no firm decision has been taken. The
hope is that things will move faster
when Kees de Joncheere, a strong
proponent for access to medicines
and ex-WHO director, joins the board
in March, 2017.
Tatum Anderson
www.thelancet.com Vol 388 December 10, 2016