The price of experience : writings on living with cancer

T H E P R I C E O F

E X P E R I E N C E

W R I T I N G S

O N L I V I N G

W I T H C A N C E R

M I K E M A R Q U S E E

TH

E P

RIC

E O

F E

XP

ER

IEN

CE M

IKE

MA

RQ

US

EE

OR Bookswww.orbooks.comCover design by Bathcat Ltd.Cover photograph © Picsfive

Diagnosed with multiple myeloma, a type of blood cancer, six years ago,

Mike Marqusee was at first reluctant to write about such a private

condition. But he came to realize that writing provided a precious conti-

nuity with his work before the disease. It also allowed him to address a

variety of insidious platitudes that surround illness, often connected to

the individualistic idea that the sufferer must be “brave”.

And so Marqusee began to write about his symptoms and feelings,

the responses of friends to the news that he was ill, and the way these

reflected broader attitudes. He described the political struggles occurring

in the London hospital that continues to care for him, and the crisis in

Britain’s National Health Service (NHS). Big Pharma, whose drugs keep

Marqusee alive but which are sold to the NHS at extortionate prices,

fell under particularly astringent scrutiny.

The observations about cancer in these pages are never trite or

sentimental. Rather they are acute, impassioned and political. And they

convey important, shared truths, both personal and social, about an

illness that will affect one in three people.

M I K E M A R Q U S E E is an American-born writer, journalist and

political activist who has lived in Britain since 1971. He is the author of

numerous books including If I Am Not for Myself: Journey of an Anti-

Zionist Jew, Wicked Messenger: Bob Dylan and the Sixties, Redemption

Song: Muhammad Ali and the Spirit of the Sixties, Anyone but England:

An Outsider Looks at English Cricket, a novel, Slow Turn, and a

collection of poetry, Street Music.

T H E P R I C E O F

E X P E R I E N C E

W R I T I N G S

O N L I V I N G

W I T H C A N C E R


TH

E P

RIC

E O

F E

XP

ER

IEN

CE M

IKE

MA

RQ

US

EE

OR Bookswww.orbooks.comCover design by Bathcat Ltd.Cover photograph © Picsfive

Diagnosed with multiple myeloma, a type of blood cancer, six years ago,

Mike Marqusee was at first reluctant to write about such a private

condition. But he came to realize that writing provided a precious conti-

nuity with his work before the disease. It also allowed him to address a

variety of insidious platitudes that surround illness, often connected to

the individualistic idea that the sufferer must be “brave.”

And so Marqusee began to write about his symptoms and feelings,

the responses of friends to the news that he was ill, and the way these

reflected broader attitudes. He described the political struggles occurring

in the London hospital that continues to care for him, and the crisis in

Britain’s National Health Service (NHS). Big Pharma, whose drugs keep

Marqusee alive but which are sold to the NHS at extortionate prices,

fell under particularly astringent scrutiny.

The observations about cancer in these pages are never trite or

sentimental. Rather they are acute, impassioned, and political. And

they convey important, shared truths, both personal and social, about

an illness that will affect one in three people.

M I K E M A R Q U S E E is an American-born writer, journalist, and

political activist who has lived in Britain since 1971. He is the author of

numerous books including If I Am Not for Myself: Journey of an Anti-

Zionist Jew, Wicked Messenger: Bob Dylan and the Sixties, Redemption

Song: Muhammad Ali and the Spirit of the Sixties, Anyone but England:

An Outsider Looks at English Cricket, a novel, Slow Turn, and a

collection of poetry, Street Music.

T H E P R I C E O F E X P E R I E N C E

A L S O B Y M I K E M A R Q U S E E

Anyone But England: An Outsider Looks at English Cricket

War Minus the Shooting: A Journey through South Asia during Cricket’s World Cup

Redemption Song: Muhammad Ali and the Spirit of the Sixties

Wicked Messenger: Bob Dylan and the 1960s

If I Am Not for Myself: Journey of an Anti-Zionist Jew

Saved by a Wandering Mind (poems)

Street Music (poems)

For an archive of the author’s writings see www.mikemarqusee.com

T H E P R I C E O F E X P E R I E N C E

W R I T I N G S O N

L I V I N G W I T H C A N C E R


OR Books

New York • London

© 2014 Mike Marqusee

Published by OR Books, New York and London Visit our website at www.orbooks.com

First printing 2014

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopy, recording, or any information storage retrieval system, without permission in writing from the publisher, except brief passages for review purposes.

ISBN 978-1-939293-44-2 paperback ISBN 978-1-939293-45-9 e-book

This book is set in Stempel Garamond. Text design by Bathcat Ltd. Typeset by Lapiz Digital, Chennai, India. Printed by BookMobile in the US and CPI Books Ltd in the UK.

C O N T E N T S

An Introduction

Prologue: The Hospital’s Story

A Conscript in the “War on Cancer”

A Tale of Two Health Systems

The Politics of Hypocrisy

False Economies

An Education in Dependency

The Complicated Business of Surviving

Memento Mori

A Crisis Contrived

Talking About Cancer

Surprisingly, I’m Still Alive

Held Hostage by Big Pharma

Credits

9

19

27

37

45

53

61

67

79

83

87

93

97

105

What is the price of Experience do men buy it for a song

Or wisdom for a dance in the street? No it is bought with the price

Of all that a man hath his house his wife his children

Wisdom is sold in the desolate market where none come to buy

And in the witherd field where the farmer plows for bread in vain

It is an easy thing to triumph in the summers sun

And in the vintage & to sing on the waggon loaded with corn

It is an easy thing to talk of patience to the afflicted

To speak the laws of prudence to the houseless wanderer . . .

It is an easy thing to rejoice in the tents of prosperity:

Thus could I sing & thus rejoice, but it is not so with me!

—William Blake, The Four Zoas

9T H E P R I C E O F E X P E R I E N C E

A N I N T R O D U C T I O N

When I was diagnosed with multiple myeloma in 2007,

I vowed to friends that I would not add to the surfeit

of cancer confessionals. I had other topics to write

about and surely nothing to add on this one, which was

already extensively and expertly covered. It’s a promise

I should have known I would not be able to keep.

Reconstructing the early phases of the illness-

treatment (at the level of individual experience, it’s

impossible to disentangle one from the other) is diffi-

cult for me. But I do remember the day I first heard the

diagnosis “cancer.”

I had been feeling pains in my chest and lower

back for months and feeling ever more unwell in an all-

encompassing way I couldn’t explain, to myself or the

doctors. The chest pains were confusing: located not

1 0 M I K E M A R Q U S E E

in but over and around the heart. I had reached a stage

where I was desperate for a diagnosis, any diagnosis (or

so I thought).

When the GP phoned to ask me to come to the

clinic to discuss my blood test results, I knew the news

would not be good. I wasn’t shocked when he explained

that the test revealed a high level of something called

“paraproteins,” indicative of a malignancy. He also

observed that I looked terrible, and referred me to the

nearby Homerton Hospital for urgent examination.

Before we parted he wrote “paraprotein” down on a

slip of paper. At home, I looked it up on the Internet. The

connection with multiple myeloma was prominent. I had

vaguely heard of this disease, but knew absolutely noth-

ing about it. That moment marked the beginning of what

became a long and continuing process of education.

Later that afternoon, at the Homerton, the exam-

ination was thorough and therefore, in a way, reas-

suring. My heart and lungs were fine and my blood

pressure was normal. But when they prodded, as they

had to, the places in my rib-cage and in my pelvis

where, I later learned, the myeloma lesions had formed,

the pain was acute and I had to give it voice. A strange

1 1T H E P R I C E O F E X P E R I E N C E

colloquy followed. Whenever the doctor prodded a

sensitive spot, I uttered a loud involuntary “Ouch!”

“Sorry!” she responded apologetically. “That’s okay,”

I reassured her. Round and round we went. “Ouch!”

“Sorry!” “That’s okay!” The doctors made it clear that

I had “a very serious illness” and would have to go to

the haemoncology unit at Barts for specialist treat-

ment. But, they said, I wasn’t dying from it just then,

and could go home with my painkillers. Which, by this

point, was all I really wanted to hear.

Throughout the day I had been wondering how and

when I should tell Liz, my partner, what the last few

hours had revealed. I rang her at work and said that I

was at the Homerton but was okay, and I’d explain it

all when we met. My tone was light, even cheerful. She

agreed to meet me at the hospital so that we could go

home together, and when she arrived, I suggested we sit

in the hospital café, where I would fill her in on the day’s

developments. I was smiling, as if it would be an amus-

ing shaggy dog story. I started out by telling her the

good news: there was nothing wrong with my heart or

lungs. I look back and laugh at myself. Who was I kid-

ding? Who was I trying to protect? It was a silly thing


to do to Liz, who at first took my reassuring noises at

face value. When I got to the cancer part, everything

changed.

In the days that followed, my mood was volatile. At

times I felt a strange calm and clarity. I walked through

my neighbourhood streets, observed the distracted bustle

of traffic and pedestrians, and was powerfully impressed

with the idea that the larger pattern of life would go on

without me. I felt sadness, but no panic. At other times,

I was gripped by a cold terror. I walked down the same

streets, observed the same things, but felt that larger pat-

tern of life as a terrible condemnation, a standing rejection

of my failed organism. As I passed groups of boisterous

children, I was overwhelmed by a fear that I would some-

how contaminate them, that they would be well advised

to steer clear of me. About this time the young cricketer

Stuart Broad was making a big impression for England

in a series against India. The then-21-year-old all-rounder

was strong, fit, and unabashedly confident in his own

body. I couldn’t stand the sight of him and had to turn

away from the television. He was a picture of blooming

good health and future promise, both of which I had

lost and would never regain. I hated him for that. For a


moment I was frightened that I wouldn’t be able to watch

cricket on television any more—which for me would have

been an irreparable loss.

Those contrasting moods soon became less extreme,

but I don’t think I’ve ever arrived at a completely settled

outlook on the whole experience. That’s at least partly

because the experience keeps changing. One phase has

followed another and none has been what I expected.

It’s not just that there are good days and bad days, good

months and bad months; it’s that they become good

or bad in different ways. The relationship between the

illness, the treatment, and my responses to both is

always shifting, posing new issues, problems, ques-

tions. I seem to be in a permanent process of adjust-

ment, though thankfully the pace of change has slowed

in recent years.

The illness has its own chronology, a separate

time moving forward at an uneven rate. Hours, days,

months, years don’t stand in their usual proportions.

Sadly, it also has a teleology, proceeding inexorably

towards an end point.

I didn’t start writing about cancer until more

than two years after I’d begun treatment. I didn’t feel


particularly compelled to share my miseries with

strangers. In fact, a reluctance to do so was one of

the reasons it took me a while to address the subject.

Much of what any seriously ill person endures is pri-

vate and intimate. Part of the burden of illness is hav-

ing to allow strangers access to these realms. The great

majority of the nurses, doctors, and technicians who’ve

treated me have been sensitive to this, but still, it’s one

of the costs of the condition. Admitting a much larger

circle of strangers into this realm by writing about it

made me feel dangerously exposed.

But eventually I did start writing about it. I had to.

First, because writing itself was a precious continu-

ity with “life before cancer.” While so many of my other

capacities had been taken away from me, I could still

write. And writing about my condition became a means

of contact with the larger world which I found increas-

ingly out of physical reach. It enabled me to engage with

that world as a participant, not just a passive spectator.

Secondly, I was dissatisfied and often irritated by

the platitudes surrounding cancer. Some of these, it

seemed to me, contained insidious messages that had

to be challenged, if only for the sake of my own mental


health. The whole individualistic, affirmative tenor of

the cancer discussion seemed unreal, a burden people

in my situation could do without.

One of my fears has been that I will gradually be

reduced to being nothing but a cancer patient. I imagine

myself losing my grip on the world. I imagine that world

being narrowed down to my immediate discomforts.

I had a taste of this when I underwent an autologous

stem-cell transplant: preoccupied moment by moment

with my bodily misery, all other hopes and concerns

extinguished.

A cancer diagnosis marks a sharp discontinuity

in life, but it doesn’t mean you cease being who you

were before you had cancer: the passions, engage-

ments, anxieties, prejudices, bad habits do not sud-

denly become redundant. I did not want to treat the

cancer as something entirely separate from everything

else of concern to me. In reflecting on my experience,

I’ve done so not just as a cancer patient but as a citizen

and human being enmeshed in a network of relation-

ships. I have always been keen to avoid compartmen-

talising my various interests, and have found that the

most fruitful approach to any subject was to break


down the categories into which it was usually fitted.

That approach acquired extra urgency when I turned

to writing about cancer.

The illness and the treatment have been unavoid-

ably prominent features of my life, but they have not

been experienced in isolation. As it happened, the onset

of my disease coincided with the financial crisis. Since

then it’s followed its refractory course through years of

economic recession and increasingly cruel austerity. As

readers will see, that’s more than just a “background”

to me. Living with cancer has confirmed the feminist

adage that “the personal is political.” These very pri-

vate experiences could not be separated from very pub-

lic issues: in particular, the government’s remorseless

attack on the NHS, and, more generally, the way ill-

ness, death, and vulnerability are treated in our society.

But I didn’t start writing about cancer with any larger

project in mind. The pieces in this book are all responses

to particular occasions, news stories, or commissions.

The common themes emerged only in retrospect.

Looking back, the experience has deepened my

understanding of our mutual dependence and my hos-

tility to the ideology that denies this. It’s also intensified


my commitment to an egalitarian and cooperative social

order, not as a distant utopia, but as an urgent require-

ment of the hour. Of course, all of that is an extension

of political values developed long before cancer entered

my life. But as the disease unfolded, what I found was

that, far from becoming abstract or irrelevant, those

values acquired a greater force and reality. I do wonder

how a ruggedly individualistic ideology can survive the

cancer experience, though I know that it does. What an

effort of denial that must involve!

At the same time, perhaps paradoxically, the expe-

rience has given me a new appreciation of the precious-

ness of independence. Much of a cancer patient’s life is

taken up with a struggle for autonomy—in relation to

institutions, professionals, caregivers, medications. It’s

a hard and often unsuccessful struggle, but then so is

any real struggle for freedom, which, I’ve learned, is

about much more than physical mobility.

I’ve been encouraged and often touched by the

warm response to my articles from people who’ve had

their own experiences of cancer and serious illness. I was

also humbled. In comment threads and through emails,

individuals recounted and reflected on the most acute


suffering and loss. Their circumstances and illnesses

were often much worse than mine—except that I’ve

learned there really is no hierarchy of suffering.

The poet Heinrich Heine spent his last years con-

fined to bed by a mysterious and brutal illness. After a

long and tortuous intellectual journey, he had eventu-

ally arrived at his own highly personalised belief in a god

who served for him a special purpose. “Thank God that

I have a God again,” he wrote to a friend, “so that in

extreme pain I can allow myself to curse and blaspheme.

The atheist is denied such solace.” I’ve sometimes regret-

ted not having a divine power I can curse and blaspheme.

The powers of this world will have to suffice.

—LON DON, DECEM BER 2013


P R O L O G U E : T H E H O S P I T A L’ S S T O R Y

AUGUST 20 09

St Bartholomew’s Hospital—known to Londoners for

generations simply as Barts—has a claim to being the

world’s longest-established provider of free medical care

to the poor, having been founded in 1123 by a penitent

Norman courtier as a priory hospital on the edge of what

was then the walled City of London. Following Henry

VIII’s dissolution of the monasteries in 1539, the citizenry

of London petitioned the king to save the hospital. He

granted it to the Corporation of the City of London and

it continued as a municipal institution until 1948, when it

was absorbed into the new National Health Service.

Having been diagnosed some months ago with

an illness that requires frequent visits to hospital for


complex treatments, I’ve been spending much of my life

these days at Barts. Not far from St Paul’s Cathedral,

I enter via the 1702 gateway—a little gem of English

baroque—past the unadorned solid square tower of the

thirteenth-century priory Church, under the North

Wing with its Hogarth murals, and into the compact

eighteenth-century square, designed by James Gibbs

to provide a cloister-like retreat for patients and staff.

It’s now an unprepossessing carpark, but will shortly

be pedestrianised and returned to its former sober

elegance, with the bubbling mid-nineteenth-century

fountain as a lighthearted centrepiece.

The architectural legacy reflects a remarkable med-

ical history. The seventeenth-century scientist William

Harvey was a surgeon at Barts when he discovered the cir-

culation of the blood. In the century that followed, Barts

became a major medical school, and its staff led the way

in breaking from the old barbers’ guilds and establishing

surgery as a modern science. It was one of the first hospi-

tals to employ anaesthetics, and it pioneered developments

in ophthalmology, surgical techniques, pathology, radio-

therapy, and the treatment of thyroid disease and cancers.

On the negative side, the hospital for many years resisted


the introduction of antiseptic procedures and continued

to exclude women students until 1947.

The school’s most famous student was not, however,

renowned for surgical prowess. W. G. Grace studied here

from 1874–1876, years when he was busy revolutionis-

ing the game of cricket and had already become one of

the most famous names in the realm. Teachers and fel-

low students expected little from the young celebrity, for

whom the medical profession was mainly a sinecure that

protected his otherwise dubious status as an “amateur”

cricketer.*

Historical intrigue aside, what counts for any

patient in any hospital is the quality of treatment. When

I was transferred from my general practitioner to Barts

* After writing this, I discovered another major figure from Barts’

history, one with a special relevance for me. For several decades, one

of the hospital’s leading surgeons was Geoffrey Keynes, brother of

the economist John Maynard and an eminent bibliophile and Wil-

liam Blake enthusiast. I grew up on his wonderful editions of Blake’s

writings so was pleased to discover the connection. As a surgeon at

Barts, he challenged the then-prevalent assumption that in dealing

with breast cancer, the more that was cut out, the better. He pursued

the opposite, altogether-more-humane course with positive results. I

like to think it was a Blakean respect for life that led him to question

the standard but brutally arrogant procedure.


I feared I might fall through the cracks at such a large,

multi-faceted institution. I was not reassured by the fact

that at the moment Barts is something of a building site,

as a long-delayed and often controversial refurbishment

finally gets underway. Despite the confusion caused by

temporary access, diversions, and scaffolding, the coor-

dination and integration in the inter-disciplinary care

I’ve received—from doctors, nurses, technicians, and

support staff—has been exemplary.

Here I have benefited from recent sea changes in best

medical practice. The glibness and arrogance for which

some sections of the medical profession are noted and

resented—across national and cultural boundaries—

have given way in some quarters at least to a commit-

ment to transparency and patient involvement. Doctors

share with me all the information about my case on their

computer screens, from lab reports to X-rays and MRIs.

They copy me into correspondence. The various nurses

and specialists treating me are kept up to date with all

the details of my condition and, importantly, my medi-

cation regime. At each stage, I’ve found an openness to

questions and a willingness to address anxieties. Given

the pressure on resources, there are sometimes delays,


but every effort is made to keep me informed of these

and to minimise inconvenience.

All this is delivered with a quiet, caring, un-panicked

but thorough efficiency by a staff drawn from all over the

world. Only 36% of Barts staff are British and white; 13%

come from the Indian subcontinent, 10% from Africa, 7%

from the Philippines, and 4% from the Caribbean. In my

experience the diversity is anything but an obstacle to the

impressive teamwork. Most important, I am not treated as

a lab rat or an ambulatory statistic but as an intelligent and

autonomous human being. The more democratic practice

yields more effective treatment. I am able to benefit from

the high tech and clinical advances that in other contexts

can tear patients into pieces as they cope with uncoor-

dinated, sometimes contradictory information and the

diverging dynamics of various specialisms.

My entire treatment, including medication, is free,

and I receive it by right. It’s not charity, and it’s not

conditional on anything but my need for it. I’ve not

only never been issued a bill of any kind for all the

numerous services provided; I’ve never had to fill in a

claim or an application or a form (except for consent

forms). We take this for granted in Britain, but friends


in India and the U.S. learn of it with envy. The complete

alleviation of the burden and anxiety of finance is an

obvious boon for all concerned, and it transforms the

ethos with which care is delivered and received. Medi-

cal care is surely a human right, like primary education,

and India and the U.S. are both societies that can afford

to make it a reality for all their citizens. That they have

failed to do is the result of vested interests and wrong

priorities.

Not that Barts is safe from the relentless pressures

corroding the social democratic principles of the NHS.

In the early ’90s, the Conservative government threat-

ened it with closure (it occupies a piece of prime central

London real estate). As in Henry VIII’s day, London’s

populace rallied to Barts’ support; more than one mil-

lion signed a petition to save the hospital. In 1997, the

new Labour government promised to refurbish Barts on

its historic site. Years of consultation and delay followed.

The government insisted that finance for the project

should be provided exclusively from the private sector,

in keeping with its favoured Private Finance Initiative

(PFI), through which consortia of banks, building firms,

and developers finance and build hospitals, which are


then leased back to the NHS over thirty or more years,

at a handsome and guaranteed rate of profit.

As the projected PFI costs for the Barts project

soared, in early 2006 the government once again renewed

threats to the venerable institution’s existence. And once

again popular resistance, including an appeal signed by

one thousand doctors, prevented the worst, though at

a cost. The scaled-back redevelopment involves a 20%

loss of planned bed capacity (250 beds), and leaves

empty several floors of the new buildings, presumably

for commercial lease. This will still saddle the Trust

that runs Barts with minimal annual repayments to the

PFI consortium of some £55 million—more than 11%

of its total income—for thirty-five years. Inevitably,

the patient will pay, as staff and services are squeezed

to ensure risk-immune private investors get their prom-

ised return.

So the quality of care I’ve received at Barts is by no

means guaranteed for the future. That will depend, as

in the past, on the willingness of the people of London

and the staff at the hospital to fight to sustain (and

expand) its democratic heritage.


A C O N S C R I P T I N T H E

“ WA R O N C A N C E R ”

OCTOBER 20 09

Obituaries routinely inform us that so-and-so has died

“after a brave battle against cancer.” Of course, we will

never read that so-and-so has died “after a pathetically

feeble battle against cancer.” But one thing that I have

come to appreciate since being diagnosed with multiple

myeloma (a cancer of the blood) two years ago is how

unreal both notions are. It’s just not like that.

The emphasis on cancer patients’ “bravery” and

“courage” implies that if you can’t “conquer” your

cancer, there’s something wrong with you, some

weakness or flaw. If your cancer progresses rapidly,


is it your fault? Does it reflect some failure of will-

power?

In blaming the victim, the ideology attached to

cancer mirrors the bootstrap individualism of the

neoliberal order, in which the poor are poor because

of their own weaknesses—and “failure” and “success”

become the ultimate duality, dished out according to

individual merit.

It also reinforces the demand on patients for uncom-

plaining stoicism, which in many cases is why they are in

bad shape in the first place. Late diagnosis leads to tens

of thousands of avoidable deaths in the UK each year.

And even for those who do seek a diagnosis, the stoicism

remains a barrier to effective treatment. The free flow

of information between patient and doctor is a scientific

necessity, and a reluctance to complain inhibits it.

Earlier this year, Barack Obama vowed to “launch

a new effort to conquer a disease that has touched the

life of nearly every American.” In so doing, he was

intensifying and expanding a “war on cancer” first

declared by Richard Nixon in 1971. For all the billions

subsequently spent by the U.S., British, and other gov-

ernments, progress in that “war” has been fitful. The


age-adjusted mortality rate* for cancer is about the same

in the twenty-first century as it was fifty years ago,

whereas death rates for cardiac, cerebrovascular, and

infectious diseases have declined by about two-thirds.

Since 1977, the overall incidence of cancer in Britain

(discounting increases caused by an ageing population)

has shot up by 25%.

The war on cancer is as misconceived as the “war

on terror” or the “war on drugs.” For a start, why must

every concerted human effort be likened to warfare? Is

this the only way we are able to describe cooperation in

pursuit of a common goal? And who are the enemies in

this war? Cancer cells may be “malignant” but they are

not malevolent. Their “abnormality” is as much a prod-

uct of nature as the “normality” of other cells. Like the

wars on “drugs” and “terror,” the war on cancer misap-

plies the martial metaphor to dangerous effect. It sim-

plifies a complex and daunting phenomenon—making

it ripe for political and financial exploitation.

* “Age adjustment” is a statistical process applied to rates of disease or

death that allows communities with different age structures to be com-

pared. It enables us to factor out those increases in cancer mortality

that are due to the ageing population and identify underlying trends.


In the war on cancer, the search for the ultimate

weapon, the magic bullet that will “cure” cancer, over-

shadows other tactics. Nixon promised “a cure for can-

cer” in ten years; Obama promises one “in our times.” But

there is unlikely to be a single “cure for cancer.” There are

more than two hundred recognised types of cancer, and

their causes are myriad. As a strategic objective, the search

for the ultimate weapon distorts research and investment,

drawing resources away from prevention and treatment,

areas where progress has and can be made.

Thanks to collusion between industries and scien-

tists, it took decades for the truth about tobacco and

asbestos to come out; for the same reason it will prob-

ably take many more years for us to learn the truth

about other cancer-causing agents in our environment.

In 2007, 6% of cancer deaths in the UK (ten thousand)

were caused by occupational exposure to carcinogens.

In cases like this, what’s needed is a revolution in our

tawdry health and safety regime, not new drugs.

As for “lifestyle” factors, they are part of the wider

environmental and social background of cancer, not a

separate category applying to individuals with inade-

quate willpower. The context of any “lifestyle” choice


is a mix of opportunity and deterrence, economics and

culture, personal circumstances and social conditions.

A real general attack on the causes of cancer would

require industrial, consumer, and environmental

reforms on a vast scale, not scapegoating those patients

perceived as shirkers and deserters in a holy war.

Thankfully, as the incidence of cancer has risen,

so has our ability to treat it. Survival rates have dou-

bled in the past thirty years, with almost half of those

diagnosed with cancer living for five years or more.

This is less about drug breakthroughs than it is about

early diagnosis, improvements in care, and refinements

in existing treatments. Today, what’s preventing cancer

patients from living longer and more happily is mainly

a failure to apply existing best practices universally.

The single biggest boon for people living with cancer

would be the elimination of inequalities in health care.

In England and Wales, over the period of 1986–1999,

the “deprivation gap” in survival between rich and

poor became more marked for 12 out of 16 male cancers

and 9 out of 17 female cancers examined.

Like other wars, real and imagined, the “war on

cancer” is a gift to opportunists of all stripes. Among


the circling vultures are travel insurers who charge

people with cancer ten times the rate charged to others;

the publishers of self-help books; and the promoters of

miracle cures, vitamin supplements, and various “alter-

native therapies” of no efficacy whatsoever.

But most of all, there’s the pharmaceutical industry,

which manipulates research, prices, and availability of

drugs in pursuit of profit. And with considerable success.

The industry enjoys a steady return on sales of some 17%,

three times the median return for other industries.

The industry claims that high prices reflect

long-term investments in Research and Development

(R&D). But drug companies spend on average more

than twice as much on marketing and lobbying as on

R&D. Prices do not reflect the actual costs of develop-

ing or making the drug, but are pushed up to whatever

the market can bear. Since that market is comprised of

many desperate and suffering individuals (in Britain

represented collectively by the NHS), it can be made to

bear a great deal.

Exorbitant drug prices are at the root of recent con-

troversies over the approval by the National Institute

for Health and Care Excellence (NICE) of “expensive”


cancer drugs (notably Revlimid, a therapy used in the

later stages of a number of cancers, including mine), and

top-up or “co-payments,” allowing NHS patients who

can afford it to pay for medicines deemed too expensive

for the NHS as a whole. “We are told we are being mean

all the time, but what nobody mentions is why the drugs

are so expensive,” said the NICE chairman, Professor

Michael Rawlins. “Pharmaceutical companies have

enjoyed double-digit growth year on year, and they are

out to sustain that, not least because their senior man-

agement’s earnings are related to the share price.”

Many cancer therapies are blunt instruments. They

attack not only cancer cells but everything else in sight.

This is one reason people fear cancer: the treatment can

be brutal. Making it less brutal would be a huge stride

forward for people with cancer. And that requires not

a top-down military strategy, with its win-or-lose

approach, but greater access to information, wider par-

ticipation in decision-making across hierarchies and

disciplines, and empowerment of the patient.

Because I live in the catchment area for Barts hos-

pital in central London, I find myself a winner in the

NHS post-code lottery. The treatment is cutting-edge


and the staff are efficient, caring, and respectful. What’s

more, I live close enough so that I can undergo most of

my treatment as an outpatient—a huge boon.

Cancer treatment involves extensive interaction

with institutions (hospitals, clinics, social services,

the NHS itself). Even in the best hospitals, the loss of

freedom and the dependence on anonymous forces can

be oppressive. Many cancer patients find themselves

involved in a long and taxing struggle for autonomy

—a rarely acknowledged reality of the war on cancer,

in which the generals call the shots from afar.

As Susan Sontag noted, in the course of the twen-

tieth century, cancer came to play the role that tuber-

culosis played in the nineteenth century—as a totem

of suffering and mortality, the dark shadow that can

blight the sunniest day. But the ubiquitous presence of

cancer in our culture is of dubious value to those liv-

ing with the disease. The media love cancer scares and

cancer cures; they dwell on heroic survivors (Lance

Armstrong)* and celebrity martyrs (Jade Goody). But

as Ben Goldacre has shown in his book Bad Science,

* This was written before Armstrong’s spectacular fall from grace.


newspapers routinely misrepresent research findings,

conjuring breakthroughs from nothing and leaving the

public panicked, confused, or complacent.

For those living with cancer, now and in the future

(and that’s one in three of the UK population), the big-

gest threat is the coming public-spending squeeze. Cuts

in NHS budgets and privatisation of services will mean

more people dying earlier from cancer and more people

suffering unnecessarily from it. Even better survival

rates will become a curse, as responsibility for long-term

care is thrown back on families.

What we need is not a “war on cancer” but a recog-

nition that cancer is a social and environmental issue,

and can only be fully addressed through far-reaching

economic and political change.


A T A L E O F T W O H E A L T H S Y S T E M S

FEBRUA RY 2010

During the three years I’ve been in treatment at Barts,

I’ve given thanks many times to the NHS and the people

who built and sustain it. Since I grew up in the United

States and still have close friends and family there, I’m

acutely aware of how different things might have been.

Contracting a serious illness anywhere is occasion

for anxiety and uncertainty. But in the U.S., anxiety

and uncertainty are multiplied many times over. People

who only know the NHS may not realise what they’re

being spared.

Stark and simple comparisons reveal some of the basic

advantages of the NHS. Though the U.S. spends a much

greater proportion of its wealth on health care (15.3% of


GDP to Britain’s 8.2%), many of its key health indicators

are poorer. According to the World Health Organisation,

Britain’s infant mortality rate, under-five mortality rate,

and maternal mortality rate are all significantly lower

than they are in the United States. Its rates for recovery

from injury and for healthy life expectancy are higher. In

relation to its population, Britain has 25% more hospital

beds and 30% more nurses and midwives.

Americans pay more for their health care and get

less in return because instead of a taxpayer-funded

national health service, the U.S. has a “free market”

system dominated by private health insurance compa-

nies. It is a system which adds not only cost but the

anxiety of cost to every medical transaction.

Fifteen percent of Americans—forty-six million—

have no health insurance. They either pay the full cost

of medical treatment, rely on charity, or go without.

Each year eighteen thousand deaths occur because

people have been forced to go without. Not surprisingly,

the death rate of the uninsured exceeds the insured by

25%. And the uninsured are not a fixed sub-stratum.

Over one million workers lost their health-care cover-

age in the first three months of last year alone.


As viewers of Michael Moore’s Sicko will be aware,

in the United States the plight of the insured is often

no better than the uninsured. Of the two million

Americans who went bankrupt because of medical bills

in 2008, three-quarters had health insurance.

Most Americans secure health coverage through

their employers and pay contributions towards their

premiums from their wages (over and above taxes), on

average some $3000 (£2000) per year (and rising sharply

in recent times). However, what they get for those premi-

ums is highly variable: what is and isn’t covered, to what

extent it’s covered, with what restrictions and loopholes.

Nearly all insurance plans require the patient to

pay some of the cost of treatment. Co-payments for

medications can be an insupportable burden. It’s not

unusual for cancer patients to face pharmacy bills

of $50,000 per year. Even on the government-run

Medicare programme, a single cancer drug can leave

a patient out of pocket by $800 per month. New tar-

geted therapies can cost five times as much. Inevitably,

patients try to reduce costs by reducing their medica-

tions, which may then lead to hospitalisation and still

greater costs.


“Cancer patients too often find out that their

insurance doesn’t protect them when they need care

the most,” said John R. Seffrin, chief executive of the

American Cancer Society. “High out-of-pocket costs

coupled with the high cost of insurance premiums can

force cancer patients to incur huge debt, and to delay or

forgo life-saving treatments.”

Those who have been diagnosed with a serious and

therefore expensive illness like cancer often find insurance

companies either unwilling to cover them or demanding

unaffordable premiums. One in ten people with cancer

said they could not get health coverage at all; 6% said they

actually lost their coverage because of their diagnosis.

Many companies respond to diagnoses of serious illness

by immediately reviewing the patient’s initial application

for insurance—in the hopes of finding evidence of a failure

to declare a pre-existing condition, which, however minor

or unrelated to the newly diagnosed illness, may give them

an excuse to deny or revoke coverage.

The U.S. system is not only chaotic and cruelly

unreliable; it’s also extraordinarily and unnecessarily

expensive. Only 65%–75% of the revenue from premi-

ums actually goes to paying for healthcare; 25%–35%


goes to administration, not of healthcare but of the

insurance schemes themselves, including large executive

salaries and bonuses. Five percent or more is siphoned

off as profit.

Last year the U.S.’s five biggest insurance com-

panies set an all-time record for combined profits of

$12.2 billion—a 56% increase over 2008. In the same

year, however, they dropped 2.7 million customers from

their rolls. Now these companies are clamouring for pre-

mium increases of 20%–50%—to extract greater profits

from insuring fewer people less comprehensively.

These companies have spent millions on attacking

President Obama’s health-care reform bill. Their cam-

paign has spread scare stories about the British NHS as

an example of the evils of “socialised medicine.” Amer-

icans have been told that the NHS is presided over by

“death panels” that withhold treatment from elderly or

terminally ill patients; the NHS is described as a health

“dictatorship,” under which cancer patients routinely

linger on endless waiting-lists.

Like other NHS patients, I know from my own

experience what nonsense this is. At Barts I’ve been

treated with assiduous care by an amazingly skilled and


committed staff. I’ve benefited from cutting-edge ther-

apies, multi-disciplinary approaches, and strong com-

munication among and between doctors, nurses, and

other staff. I’ve been given choices and I’ve been helped

to make them. And, of course, not once has cost been

a consideration. All the consultations and procedures,

the lab work, the technicians’ time, the prescriptions

and medications, and not once have I even had to fill

in a claim form. That’s hard for someone trapped in the

U.S. system to comprehend.

At one point I needed an allogeneic stem-cell trans-

plant. A sister who lives in California proved a match and

flew over to act as a donor. The cost of her flight was paid

for by the NHS, and at Barts she was welcomed, made

comfortable, and given every assistance in assisting me.

At Barts, I know I’m being treated as a right, sim-

ply because I’m a person in need living in its catchment

area. In the U.S., my treatment would be dependent

on my means. It’s a service I would have to purchase,

one way or another. That difference has an inevitable

impact on both patients and health-care staff.

It’s tragic that so many Americans have fallen for

the insurance companies’ self-serving propaganda.


Obama’s reforms are in fact quite modest. They do not

come close to establishing a national health service (a

plan for a “public option” to compete with the private

insurers was dropped) or provide the kind of univer-

sally accessible health care available in every other

major industrialised country. They would, however,

extend coverage to the bulk of those currently unin-

sured, stop insurers from discriminating against peo-

ple with pre-existing conditions, and curb many of the

industry’s worst practices and highest prices, while

leaving private insurers at the heart of the system.

Obama’s opponents raise fears of a state “take-

over” of health, thereby hoping to blind Americans to

the realities of the current private-sector takeover, in

which insurance companies do indeed operate what are

in effect “death panels.”

We in Britain should be grateful we’ve been spared

this particular American nightmare, but we shouldn’t

be complacent. All the political parties promise to pro-

tect the NHS in the coming bout of spending cuts, but

in reality the NHS is already being subjected to a severe

financial squeeze; services and jobs are being lost.

After the election, the NHS will be asked to make


bigger savings, i.e. deeper cuts. Health-care workers’

wages will suffer and the private sector will further

penetrate the NHS at various levels, from primary care

to specialist services to hospital finance.

Unless we stop it. The NHS—and all that makes

it better than the U.S. system—cannot be taken for

granted.


T H E P O L I T I C S O F H Y P O C R I S Y

DECEM BER 2010

Politicians of all stripes feel obliged to genuflect before

the altar of cancer, so it’s not surprising that the gov-

ernment has made strenuous efforts to cast itself as a

defender of cancer patients. Some of its measures are

genuinely beneficial. Innovative bowel screening pro-

cedures will save thousands of lives, and extra money

for new expensive life-extending cancer drugs will ben-

efit thousands more, including me.

But the government’s headline cancer pledges are

minute compensation for its spending programme’s

detrimental impact on cancer patients in general.

Far from being “ring fenced,” as the government

claims, the NHS will be forced to make (and already


is making) substantial cuts in services. The 0.1% per

annum real-terms increase is nowhere near enough to

keep pace with demand, a significant part of which

comes from the increasing number of people diagnosed

with cancer. What’s more, this paper-thin increase is

qualified by the previously announced demand for £20

billion in NHS “efficiency savings.” A government

health insider admitted to the Guardian newspaper

that in the coming years “a fifth of everything the NHS

does today will stop.”

Like all those with serious long-term illnesses,

cancer patients are bound to suffer disproportion-

ately. The government has already abandoned the one-

week target for processing cancer test results, which is

likely to add to the ten thousand lives lost every year

as a result of late diagnosis and treatment. Closures

of wards, departments, and hospitals will mean more

exhausting and costly travel. As health workers try

to treat increasing numbers with ever more restricted

resources, quality of care is bound to diminish.

A small example from my own experience: one

of the less pleasant features of having a haemotologi-

cal cancer is the need for periodic bone-marrow tests,


which involve the insertion of a needle into the pelvic

bone. I’ve learned that the longer the doctor takes in

applying the anaesthetic, the less the pain—and an

extra fifteen minutes makes the difference between

the excruciating and the just-about-bearable. Under

increasing financial pressure, that extra fifteen minutes

will become a luxury. The cuts mean, quite brutally,

more avoidable pain for more people.

The implications of the government’s proposed

reorganisation of the health service (costing £3 billion,

five times the amount promised for new cancer drugs)

are even more frightening. Once cancer symptoms are

detected, patients are referred to hospitals for long-term

treatment. In my case, for the three-and-a-half years

since my initial GP referral, overall responsibility for

my health has been undertaken by Barts, whose staff

have dealt with all manner of unpredictable symptoms,

aches, and pains, related and sometimes unrelated to my

underlying disease. Under the government’s proposals,

self-financing hospitals will be paid by GP commission-

ing consortia on a case-by-case basis. Operating within

budgetary constraints, the GPs will have to decide

whether treatments are necessary, affordable, and the


cheapest available. So basic decisions about my care

will be made by a doctor who is not actually involved

in treating me.

Meanwhile, hospitals are being encouraged to

increase revenues by taking in much greater numbers

of private patients, who will, of course, only pay if the

care they are offered privately is superior to what they

can get on the NHS. The resulting two-tier system will

inevitably downgrade the majority of cancer patients,

forcing others to reach deep into their own pockets to

ensure they receive the best available treatment.

Cancer patients require multi-disciplinary care,

involving diverse specialists often scattered across dif-

ferent sites. The proposed fragmentation of the NHS

can only obstruct the timely delivery of integrated

care, and in the end make it more costly. For NHS

staff, fragmentation will also spell the end of national

pay bargaining, conditions, and career structure. Can-

cer patients are profoundly aware of how much their

welfare depends on the commitment and diligence of

NHS workers. In the long run a poorly rewarded, inse-

cure, overworked, and in many cases casualised staff

can only provide a lower standard of treatment.


The single biggest boon for present and future

cancer patients would be raising care across the country

to the standard of existing best practice. The govern-

ment’s plans will make that impossible. The post-code

lottery will be exacerbated, and with it the already unac-

ceptable inequalities in outcomes for cancer patients.

The poorer you are, the more likely you are to get

cancer and the less likely you are to survive it. Unskilled

workers are twice as likely to die from cancer as profes-

sionals. Between 1999 and 2003, studies found that the

difference in mortality rates from all cancers between

the most deprived and least deprived groups was 70%

for men and 40% for women. What’s more, patients

with lower incomes are less likely to die at home or in a

hospice and more likely to die in hospital.

Cancer survival rates are improving for all social

groups, albeit at an uneven pace. But even that wel-

come development will become a mixed blessing, as

the resources needed to meet the demands of long-term

illness are steadily reduced. Cancer patients will be

hit hard by local government cuts, which will restrict

services such as occupational therapy, transport, and

recreational facilities. The absence of state-funded care


options will lead, in turn, to increased “bed-blocking”

in hospitals, yet another squeeze on NHS resources.

The government is looking to make major savings

by imposing tougher tests for disability benefits.

Already, the Citizens Advice Bureau reports that under

the new regime, many people with cancer and other

long-term conditions are being ruled “fit to work”

when they are nothing of the kind. The government

is also time-limiting disability benefits and excluding

from benefits people with assets, savings, or partners

who work. At the same time, higher unemployment

totals will make it harder for anyone with a long-term

illness to compete in the job market. All around, it’s a

policy package that spells personal disaster for a large

number of cancer patients.

Finally, government cuts in science funding will

impair research into cancer prevention and treatment

—in lethal disregard of the dictum of U.S. health activ-

ist Mary Lasker: “If you think research is expensive,

try disease.”

The numerous cancer advocacy groups perform

minor miracles in raising awareness and funds. But

the government’s plans present a challenge to their


customary approach. If they are going to serve their

constituents effectively, they will have to overcome

the reluctance to engage in “politics” and take an

active role in the broader campaign against the cuts.

Finally, an appeal to NHS workers from one very

grateful patient: the government takes advantage of your

sense of commitment to your patients, but by letting

them do so you are doing no favours for those patients.

Reluctance to take any action that might disrupt patient

care is understandable, but by not taking action, you may

be doing harm to your patients’ long-term prospects.

You may feel you have little power, but collectively you

have much greater power than individual patients have.

We need you to take action on our behalf, action that

is a necessary extension of the sense of dedication that

guides you in your daily work.


FA L S E E C O N O M I E S

FEBRUA RY 2011

As a long-term patient at Barts Hospital, I read this

week’s news of cuts with trepidation. In order to meet

the government’s £20 billion NHS “savings” target,

the trust that runs Barts and the Royal London in

Whitechapel is to cut 635 jobs, including 258 nursing

posts—10% of the total. This despite repeated govern-

ment pledges to protect frontline services.

The Trust insists that none of this will affect patient

care. To anyone who regularly uses Barts or the Royal

London that’s an assertion so wildly improbable as to

border on insult. Staff deliver an efficient, caring service,

but they are already at their limits. There’s no slack.

Any big hospital is a complex and fragile mecha-

nism. So much can go wrong at so many stages. Take


the administration of a single dose of chemotherapy.

Blood has to be taken, transported, analysed; therapies

have to be prescribed, assembled, delivered. Whether

it’s the nurse inserting the needle into the vein, or the

pathologist measuring platelets, there’s no room for

error. A break in the chain leads to a breakdown in

care, or worse.

The process of administering that one dose of

chemotherapy relies on tasks performed correctly and

promptly by receptionists, nurses, technicians, porters,

pathologists, pharmacists, clerical assistants, clean-

ers, IT experts, supplies managers—not to mention

doctors. It relies equally on “back-room” and “front-

line” staff. It’s as coordinated as a ballet or symphony

orchestra, and I never cease to marvel that it works. But

I also know that it’s vulnerable. There’s no way you can

slash staff by 10% and not seriously compromise the

organism.

Every one of the departments involved in that sin-

gle chemo dose will be affected by staff cuts. Fewer

people will be asked to deal with greater demand, and

that must lead to more errors, more delays, more mis-

communication, more aggravation for both staff and


patient. As you sit on your IV drip, the last thing you

want is the hospital falling apart around you.

Even more disturbing for patients, this round of

cuts is not the end of the story, at Barts or across the

NHS. As “social enterprises” competing in a health-

care market, hospitals will be under constant pressure

to cut costs or increase income. If the government gets

its way, my care will be commissioned by a GP con-

sortium, which may or may not involve the excellent

local clinic that referred me to Barts nearly four years

ago. Decisions about what treatments to fund and who

should provide them will not be made by the people

who’ve been treating me but by the consortium, which

may prefer to do business with another provider.

Patient involvement is a crucial component of

effective treatment. It hasn’t always been easy to secure

it in the NHS, but under the government’s plans it will

be replaced by a “consumer choice” that leaves me no

choice at all, that makes my care dependent on remote

market forces and private interests.

Patients have benefited in recent years from a

more integrated, multi-disciplinary approach to

treatment, one based on information-sharing and an


understanding of the complex nature of illness. The

fragmentation of the NHS will make it harder for

patients to benefit from this advance. In the course

of my treatment I’ve made use of physiotherapy,

radiotherapy, ameliorative care, and dermatology

specialists, to name only a few. How will these be

coordinated when hospitals and specialist units are

competing with each other, tempted to meet targets

by avoiding responsibilities?

The government’s proposals spell the end of national

collective bargaining in the health service, and with it

the breakup of the NHS career structure. I’ve seen many

of my caregivers move on to more specialised or respon-

sible jobs, and I know how important these prospects are

to staff. They help keep them going and growing, and

that is vital for patients.

In the future, hospitals like Barts will not be run

for profit, but they will be run by profit. They will

compete in a profit-governed marketplace, locked into

dependence on the private sector, to which they will

turn for management and finance services. Hospitals

will be under pressure to take more private patients.

They will not be able to do that unless they offer


something better to those who pay than they can get

on the NHS. Preferential treatment is inevitable, and

with it a two-tier environment in which the lower tier

is starved of resources.

There’s a virtuous circle between patient and

staff contentment; but under the stress of inadequate

resources, job insecurity, and inequalities in patient

treatment, it can turn into a vicious one, with caregivers

and patients in conflict.

The Trust aims to save £56 million over two years.

During those same two years, it will hand over nearly

£200 million (15.6% of its income) in repayments on an

ambitious PFI project, including new cancer and car-

diac centres—which will be completed just in time to

find themselves chronically understaffed. Although the

PFI dues were negotiated long before the financial cri-

sis, they are considered sacrosanct, whereas a workable

staff-patient ratio seems an optional extra.

Barts is one of Europe’s longest-established pro-

viders of free medical care for the poor. From its

twelfth-century monastic founding through its years as

a City of London charity to its development as a mod-

ern NHS hospital, it’s sought to offer the best available


care to Londoners. If the government’s plans proceed, it

will no longer be able to do that.

Next door to Barts is the London office of invest-

ment bankers and “wealth managers” Merrill Lynch.

At the end of a year in which the company was heavily

embarrassed by the Irish banking collapse, it awarded

its international boss, Thomas Montag, what appears

to be the industry’s biggest bonus package, £10 mil-

lion, about the same amount “saved” by slashing the

258 nursing posts. Altogether, the bonuses paid out to

top staff at Merrill Lynch could easily cover the entire

cost of maintaining staff levels at both Barts and the

Royal London. Merrill Lynch, of course, is only one

of a number of City institutions within a stone’s throw

of Barts which—unlike Barts—conspicuously failed in

their duties to the public. If Barts made errors on the

scale of the banks and investment houses, it would have

been closed down long ago.

Despite its prestige, its location, and its excel-

lent record, Barts is no more immune from cuts

and privatisation than any other NHS hospital. It is

not a special case but an all-too-typical example of

what is happening elsewhere. If this process is to be


arrested—and the life courses of a great many peo-

ple depend on that—then the first step is to ensure

that the upcoming TUC demonstration* is a powerful

display of popular opposition to government policies,

and specifically a show of determined support for the

health service. This will be the best chance for patients

and staff at hospitals across the country to make their

voices heard. These “savings” will be made at our

expense, and we simply cannot afford them.

* Held on March 26, 2011, the demonstration drew between 250,000

and five hundred thousand. However, this first step was not followed

by a second. For whatever reasons, neither the TUC nor the health

unions have felt able to call a major national action of any kind in

defence of the NHS.


A N E D U C A T I O N I N D E P E N D E N C Y

J ULY 2012

Now entering my fifth year of living with multiple

myeloma, I reflect back on a roller-coaster ride of

symptoms, treatments, and side effects. Whatever else

this experience has been, it’s been an education. But

what exactly have I learned? To begin with, that any

glib answer to this question misses the core of the expe-

rience—the complex dialectic of being ill, which is a

social as well as physical condition.

For me, the experience has led to a heightened

awareness of both our intricate dependence on others

and our deep-seated need for independence.

Sitting with my IV drip, I like to think about all

the human labour and ingenuity that come together


in this medical moment. I could dedicate the rest of

my life to this exercise, and still not complete the

inventory.

The first circle of dependence is immediate and

sometimes intimate: partners, friends, doctors, nurses,

cleaners, porters. Beyond them is a vast network of

people I never see: pathologists, pharmacists, IT engi-

neers, appointments managers. Everyone who has any-

thing to do with maintaining the supply of medications

or the functioning of equipment or getting me to and

from hospital. Everyone who makes sure the lights are

on and the building safe. The whole intricate ballet that

is a functioning hospital. One misstep, one breach in

the rhythm, one failure to be at the appointed spot at

the appointed time, and the whole breaks down, with

potentially dire consequences.

Beyond that, I’m dependent on a long history of

scientific development to which individuals and insti-

tutions in many countries have contributed. From

the British chemist Bence Jones identifying the pro-

tein associated with multiple myeloma in the 1840s to

the pathologist and one-time film star Justine Wanger

developing the IV drip in the 1930s; from the Irish


physician Francis Rynd, who invented the hollow nee-

dle in the mid-nineteenth century, to Don Thomas of

the University of Washington, who pioneered bone

marrow transplants in the 1980s. From the first exper-

iments with chemotherapy (a by-product of chemical

warfare) in the 1940s, through the protracted struggle

to master the art of toxicity (a dialectic of creation and

destruction if there ever was one), to the discovery of

proteasome inhibitors in the 1990s and the creation

of new “targeted therapies” like the one I’m currently

receiving.

Without innumerable advances in immunology,

biochemistry, chemical engineering, statistics, metal-

lurgy, to name but a few, I wouldn’t be where I am now

—in fact, I wouldn’t be here at all. The drip flowing

into my vein is drawn from a river with innumerable

tributaries. It is an entirely rational, intelligible process,

but no less miraculous for that.

And it’s not just a story of hard science. Alongside

that, and necessary to it, are the long histories of the

hospital, of the discipline of nursing, of the myriad

social developments which made it possible to convert

raw science into practical care.


I’m acutely conscious of how dependent I am

on those who built and sustained the NHS, includ-

ing, pre-eminently, generations of labour movement

activists and socialists. And as I sit with my IV drip

I’m mindful of those in government and business who

would smash the delicate mechanism of the hospital

and shatter the network of dependence which sustains

me.

I’m being kept alive by the contributions of so

many currents of human labour, thought, struggle,

desire, imagination. By the whole Enlightenment tra-

dition, but not only that: by other older traditions of

care, solidarity, mutuality, respect for human life, and

compassion for human suffering. The harnessing of

science, technology, and advanced forms of organisa-

tion and information to compassionate ends is by no

means automatic. It leans on, and is only made pos-

sible by, the conflict-riddled history of ethical and

political development.

Beautiful as it is, this network of dependence is

also frightening. Restrictions in capacity and mobil-

ity are hugely frustrating, and relying on others to

supplement them is not a straightforward business —


for patient or caregiver. I often feel I’m engaged in a

never-ending battle for autonomy. I fight it out in

relation to institutions, experts, medications, means of

mobility, and forms of diet. Not to mention the vital

effort to live a life beyond illness, to hold on to that

kernel of freedom that makes you who you are.

Paradoxically, the struggle for autonomy is one

you can’t win on your own. You need allies. And part

of being a caregiver is being an ally, a comrade, not a

nursemaid or controller. Independence is the stuff

of life. It’s motion, energy, free will, the capacity for

self-development. But you can achieve it only through

dependence on others, individuals and institutions,

past and present.

That’s a truth driven home to the cancer patient,

but applicable to all of us.

Illness is anything but an ideology-free zone. Cer-

tainly not for the government, which aims to divide

sufferers into acute cases deserving of support and less

acute ones that must be forced out into the labour mar-

ket, where our only function will be to undercut wages

and conditions.


This is one among many reasons why resistance to the

attacks on benefits for the disabled ought to be a central

plank of the movement against austerity. The crisis facing

the ill is an extreme form of the crisis facing the major-

ity of the populace. We don’t want charity—the form of

dependence that makes independence impossible—but

rights and the resources to exercise those rights. Speaking

for myself, taking part in anti-cuts activity is some of the

best therapy available, an unashamed acknowledgment of

social dependence, and at the same time a declaration of

political-spiritual independence.


T H E C O M P L I C A T E D B U S I N E S S

O F S U R V I V I N G

AUGUST 2012

For a long time I was perplexed by the phenomenon of

“survivor’s guilt.” While I recognised it as a reality, a

terrible affliction, and I could see its logic, to me that

logic seemed perverse and alien. I couldn’t get inside it.

Now five years after being diagnosed with mul-

tiple myeloma, I find myself, against the odds, enjoy-

ing a period of remission. And with it a more intimate

understanding of “survivor’s guilt,” at least as it applies

to cancer survivors.

When you’re first diagnosed with cancer, especially

an “inexplicable” one like multiple myeloma (cause

unknown), you think: why me? What have I done to be


singled out for this suffering, for an early and arbitrary

death? Then when you survive, you think: why me? What

have I done to be spared this suffering, to be granted a

stay of execution, denied to others who happen to fall on

the wrong side of the statistical median? What burdens

does survival place on me? How can I prove worthy of

this reprieve? How ought I to use this extra time? And

how much of it will there be?

Surviving, it turns out, is a complicated business.

There are priceless opportunities but also challenges. To

what end do I survive? How do I choose my priorities?

For me, “remission” is yet another phase in a long ill-

ness, another phase bound to come to an end. The illness

is in abeyance, but hovering over my shoulder, awaiting

its moment of return, a spectre at the feast, out of sight

but never entirely out of mind. We all survive only pro-

visionally, but in my case the provisional is less of an

abstraction. I’m reminded of that every time my blood is

tested, or I feel a twinge in my vulnerable skeleton.

Some would advise me that in these circumstances

it’s best to see the glass as “half full” rather than “half

empty”—advice that presumes it’s merely an act of

will to see it half full, and a failure of will to see it half


empty, that makes a virtue out of describing absence or

need as satisfaction. Like much advice cancer patients

receive, the injunction to see the glass “half full” is a

way of telling us not to complain, not to disturb others

with our discomforts or fears. At all costs we must be

spared the Dark Side.

Nor does it help to try to see the same glass as

simultaneously “half full” and “half empty.” At any

moment those may not be the proportions, and every-

thing depends on what the glass is half full with, and

what it’s missing. The half full doesn’t necessarily com-

pensate for the half empty.

An encounter with one’s mortality is supposed

to “put things in perspective” or teach us a lesson in

“proportion.” To some extent it has done that for me,

but it doesn’t annul the frustrations of daily life, or

magic away minor irritations or petty resentments. It

doesn’t suddenly tame deep-seated drives and desires

(“proportion” doesn’t apply to them). It doesn’t

lessen the weight of social injustice. The injunction

to “rise above” grievances becomes, in the end, yet

another burden, an artificial imposition, an exercise

in denial.


The same can be said of the commonplace about

“living every moment to the full.” Yes, it’s a good idea

to seize the day while you can, to savour life’s beauties,

and generally to make the most of what falls in your

way. But in the end these are platitudes that answer

none of the real questions posed to “survivors.” They

become just another source of anxiety: “What’s wrong

with me, I’m not living every moment to the full?”

The echoes of the prevailing neoliberal ideology

are deafening. The perpetual injunction to enjoy, to

consume, to celebrate. The post-modern conception

of moments as merely multitudinous, one as good as

another, as long as you “live it to the full.” The idea

that nothing is real that cannot be assimilated to the

pleasure principle, to the satisfactions of a perpetual

present. It’s a variant on the core message of corpo-

rate advertising, with its inducements to repetition-

compulsion and fetishistic behaviour, its equation of

the act of consumption with the acquisition of happi-

ness, its generation of a world where “needs” remain

forever stimulated, forever unsatisfied.

The only way to “live every moment to the full”

is to live for a purpose beyond the moment. Otherwise


you’re left with a succession of unrelated moments.

There’s no past or future. The present is no longer the

critical junction between the two, the place where one

is transformed into the other, where choices are made.

We can never live entirely in the moment because

we carry with us an accumulated past, both personal

and social, coded in our psyches, working away in dark-

ness. Denying that reality in the name of “the moment”

merely enhances its power over us. Conversely, denying

the link between “the moment” and the future, between

the immediate and the realm beyond it, is to render the

moment impotent and literally inconsequential.

When William Blake spoke of seeing “a world in a

grain of sand / And a heaven in a wild flower,” holding

“infinity in the palm of your hand, / And eternity in an

hour,” what he had in mind was something radically dif-

ferent from contemporary notions of living in the moment.

Every Time less than a pulsation of the artery

Is equal in its period & value to Six Thousand Years.

For in this Period the Poets Work is Done: and all the Great

Events of Time start forth & are concievd in such a Period

Within a Moment: a Pulsation of the Artery.


For Blake, “moments” are constructed, acts of the

imagination, “wondrous buildings.” And crucially, they

are built—can only be built—in defiance of the estab-

lished order and its ideology. In Blake’s terms, in defi-

ance of “Satan, who is the god of this world” and his

agents:

There is a Moment in each Day that Satan cannot find

Nor can his Watch Fiends find it, but the Industrious find

This Moment & it multiply, & when it once is found

It renovates every Moment of the Day if rightly placed

The context of Blake’s lines was an era of political

repression, of spies and informers, and of ideological

orthodoxy. He saw how Satan and his “Watch Fiends”

inveigle their way into our inner lives, using our own

powers against us, chaining us to the social order, and

blinding us to its artificial foundations.

For Blake, the “moment” is the moment, of whatever

duration, in which we break loose from these “mind-

forg’d manacles.” It has transformative power. It is not

a place of rest, an end-point, but a new beginning, an

opening, which must be multiplied and “rightly placed.”


To get to this kind of moment, to grasp the pos-

sibilities latent in a reality that exceeds our grasp,

requires a kind of inner revolution, a dismantling of

habit, convention, precedent, an overcoming of the

myriad forms of self-deception and social opacity.

It means in the end overthrowing the existing order,

the prevailing hierarchies, of which we are all prod-

ucts and which we are all programmed (but not con-

demned) to reproduce.

Living with a purpose is not the same as living

according to a plan. On the contrary, it entails facing

up to the unresolved character of reality: the contingen-

cies on which our lives hinge. In fact, my experience of

mortal illness has deepened my sense that life is aston-

ishingly super-abundant, protean, overflowing all our

categories, baffling all attempts to grasp it as a whole.

That’s why, if you take it seriously, as neither a

license nor an encumbrance, “living each moment to

the full” must be a daunting, painful, labour-intensive

task. It’s a work of exploration, not passive reception.

As such it carries risk. The “moment” is not a comfort

zone, an island sealed off from peril, from challenge,

but a point of intersection and potential connection. It’s


about breaking out of a confining circle, not reposing

safely inside it.

Inevitably, for me, “surviving” has a political

dimension. My illness has coincided with the unfolding

of the latest crisis of capitalism, whose effects on the

NHS I see in uncomfortable close-up. I’m alive now

not simply because of scientific advances, but because

of the application of those advances to human welfare

—made possible by the NHS. In the U.S., the life-ex-

tending treatments I’ve received would have been

financially devastating or simply beyond my means.

Not everyone who survives cancer can fully

return to who they were previously, nor should they

be expected to. We survive, but usually not unscathed.

In many cases, what ensues is a struggle with fatigue,

immobility, disability, depression, and a shifting array

of symptoms and side-effects, not to mention juggling

medications and hospital appointments. When all this

is compounded by lack of money, the advice to “live

every moment to the full” is a very unfunny joke.

Even as we enable people to live longer we take away

from them the means to live that life as well as it can be

lived, never mind “to the full.” In our social-Darwinist


order, the increasing survival-of-the-not-fit is an

awkward embarrassment. Cuts in benefits and services

are making it more difficult to survive with a modicum

of dignity. We’re to be handed over to the tender mer-

cies of a deregulated labour market that offers little to

anyone dealing with a recurrent illness—even if they’re

ruled “fit to work” by Atos.* As the collective provision

of services is withdrawn, our survival becomes a burden

for those close to us, a blessing mixed with hardship.

All of which means that cancer patients face an

unavoidably political struggle, a struggle against the

ideology of market imperatives. So precious is the

NHS, as a historical high-water mark and a pointer to

a better future, that resistance to its dismemberment

must be a priority of this moment. If we’re to lose the

NHS as we’ve known it, if we’re to go down, I want us

to go down fighting. That’s the best way to “live the

moment”—defending the future in the present.

But as Blake reminds us, “living the moment” also

requires an act of separation. Although it may sound

* The multi-national corporation contracted by the British govern-

ment to conduct “fit for work” assessments on people with disabilities.


odd in the midst of an article articulating a personal

experience, privacy is something I’ve come to cherish

and nurture much more consciously than in the past.

There’s little dignity in laying open your wounds to

the world, although it’s idle to pretend that you’re not

wounded. In either case, my aim is to keep Satan’s

Watch Fiends at bay, which doesn’t mean disconnect-

ing from the world, but from their view of the world.

Strangely, in my protected private world I feel more

connected than ever to the great world outside, the

world in flux, the world of which I remain a part, even

in my bolt-hole. The Internet is, in this respect, a boon,

as it is for anyone suffering confinement. Though for

my part I still discover more new things—things new

to me—between the covers of printed books, includ-

ing in texts published centuries ago.

I know that it’s often supposed that the closeness

of mortality makes people more benign, more dis-

posed to love. But once again, I guess I fail the test.

My hatred of the exploiters and their apologists is

sharper and fiercer than ever. The rule of global capital

has never seemed more naked, its casual brutality and

hubristic tyranny more exposed, its denial of human


interdependence carried to sociopathic lengths in the

corporate disregard for climate change.

In this context, anger against injustice is not to

be diluted in “the moment” or suppressed because the

glass is “half full.”

While in itself the survivor’s situation provides

no clarity, it certainly makes you seek clarity, of one

kind or another. But if there is some point of rest in

life’s journey, a plane of resolution, an end to doubt and

inquiry, I haven’t reached it, and I’m not sure I want to

reach it. As long as I’m going, I’ll be looking to make

discoveries: a poet or a musical genre or a twist in the

tail of a Test match, new waves of resistance, new politi-

cal opportunities, new horizons of thought and feeling.

Though I reserve my rights to complain and to be

angry, I do feel lucky in some respects. Principally in the

support of those closest to me. But also in that reading

and writing have always been central to me and, despite

my illness, I can keep practising and even improving

both skills. Others I know who have lost not only their

mode of employment, but also the chance to engage in

the activities that gave meaning to their lives, are less for-

tunate. Or is that just me looking at the glass as half full?


M E M E N T O M O R I

A PR IL 2013

Receiving a cancer diagnosis, and with it, at times, a

harsh prognosis, is inevitably a strange and disorientat-

ing experience. It poses awkward challenges for every-

one concerned—doctors, patients, loved ones. There is in

the end no right way to breach news of this kind, which

in any case takes time to sink in. And just as there’s no

proper way to tell someone that their time on this earth

is being cut short, so there’s no proper way to respond

to this information. When you’re addressing realities of

this scope, and of this intimacy, you need some kind of

higher poetry, and since that’s not possible for most of

us, we stumble along with the formulas at hand.

I admire Iain Banks’ choice in informing his read-

ers and the wider public of his situation and doing so


with unaffected directness.* But I also respect and

fully understand other responses, including a desire for

anonymity. Every time I’ve written about my ongoing

encounter with cancer, I’ve felt ambivalent. There’s a

limit to what I want to share with strangers. And there

is something uncomfortable about calling attention to

one’s own medical misfortune in a world where so many

suffer so much so unjustly. At the same time, I know

that a number of people welcome informed and sensitive

comment on the subject, not least because it alleviates

the isolation that, one way or another, often comes with

the illness. In sharing his condition, Banks—as I’m sure

he’ll know from the responses he’s received—touched

on an experience which, though widely shared, is still

grappled with largely out of public view.

Once cancer enters your life, it’s strange how

ubiquitous the topic seems. You turn on the televi-

sion and it’s there in charity appeals and soap operas,

heavyweight dramas and even sitcoms. It’s a running

* On April 4, 2013, the novelist Iain Banks revealed in a message on

his website that he had cancer and his condition was terminal. The

announcement struck a chord and prompted a public outpouring of

sympathy and support. He died on June 9, 2013.


theme in the news media, of which the coverage of

Banks’ announcement (and this article) forms a part.

Despite all that, we remain mostly ill-equipped to talk

about the realities of the disease; our formulas seem

paltry or glib. There is an enormous drive to pass over

the matter, to move on to another topic.

For me, there was one set of problems receiving the

news, absorbing it, and making what sense of it I could,

and then another in telling friends about it: what words

to choose, what tone to take, and what to expect in

response. This in turn, I knew, posed yet another set of

problems for them. How much all this has to do with our

own culture and its general depthlessness, and how much

is intrinsic to the human situation or the limitations of

language, I don’t know. Banks’ announcement acts as

a kind of brutal memento mori in a society that mostly

keeps death off-stage, or reduces it, PlayStation-style, to

a distant pantomime. It’s the kind of news that stops peo-

ple in their tracks—the tracks of daily life with its habits

and assumptions, in which death may be inevitable but is

not for today or tomorrow. Not for me and mine.

In the football world there was a similar response to

the near-death of Fabrice Muamba, the 23-year-old Bolton


player struck down, without warning, by life-threatening

heart failure in the midst of an FA Cup quarter-final. The

event was a shocking one for football fans. It didn’t matter

whether they’d heard of Muamba before. That death or

near-death could strike so arbitrarily, so suddenly, in the

midst of a game, an exercise of energy and spontaneity,

was profoundly unsettling.

Banks paid a heartfelt tribute to the “deeply impres-

sive” care he’d received from the NHS. Countless others

dealing with cancer will echo that. His testimony is yet

another reminder of how much we stand to lose in the

current “makeover” of the NHS. Even for those it can-

not save, the NHS makes possible a death with dignity

and minimal suffering. The question is, do we value that

service, that final act of care and respect, sufficiently to

ensure that it continues to be available to all?

Right now, for me, as a patient under life-sustaining

treatment by the NHS, discussion of cancer must also be

discussion of the threat to that treatment from cuts and

privatisation. Cancer is the most intimate of experiences,

a malignancy secretly working its way inside you, but it

is also a social issue, a matter of shared common concern,

and therefore necessarily a political one.


A C R I S I S C O N T R I V E D

J ULY 2013

The financial crisis threatening jobs and services at

the Barts Health Trust hospitals is a scandal and a

tragedy—because it is entirely contrived.

Among the main causes of the £2 million-per-week

deficit are “non-delivery of planned cost improve-

ment programme schemes.” In other words, the Trust

has been unable to implement the spending cuts it is

required to make as part of the NHS-wide £20 billion

“efficiency savings” programme.

It’s not that the Trust hasn’t been trying to meet its

“savings” targets, or that staff have been wanton with

resources; it’s that those targets cannot be met without

compromising patient care. It’s a paper exercise that is

disjointed from the realities of providing the service.


In its report on the crisis, the Guardian notes that

“Attempts to cut wage costs are failing because vacan-

cies are having to be filled by agency staff.” What could

better illustrate the irrationality of the NHS financial

squeeze? Patient needs are non-negotiable; the demand

does not fluctuate according to the economic cycle, and

therefore the supply has to be consistent and contin-

uous. This cannot be done within the business model

embraced by the Barts bosses. (And the only serious

error I’ve suffered in my treatment at Barts was the

fault of an agency nurse on a night shift, who didn’t

understand how to use a new piece of equipment.)

The same point applies to the problem of escalating

Accident & Emergency costs. The hospitals are pushing

hard for people not to resort to A&E unless it’s abso-

lutely necessary, but in the end A&E demand is out of

the hands of the hospitals that have to meet it. Demand-

ing an arbitrary level of savings from A&E is tantamount

to demanding an arbitrary cap on A&E demand, which

is not possible, unless you’re simply going to deny treat-

ment to people who need it.

The Guardian article notes that the Trust is avoid-

ing mentioning the elephant in the room: the massive


PFI rebuilding programme that costs the Trust some

hundred million a year in repayments. These, it appears,

can never be renegotiated or re-scheduled.

Muddying the waters is the news that the Barts

Trust hospitals are to face inspection as a result of “seri-

ous patient safety incidents . . . poor patient confidence

and trust in its nurses; long waits for urgent cancer

treatment; excessive rates of Caesarean section births;

and too many emergency re-admissions.” Redressing

any of these shortcomings will require more, not less,

money; and the proposed cuts in staff and departmen-

tal spending will surely exacerbate existing problems.

But here’s where the current spate of negative stories

about NHS treatment plays a dubious political role.

Not because the stories are untrue or insignificant

(they are neither), but because they are the effects, not

the cause, of the NHS crisis.

I regularly attend the weekly haemoncology clinic

at Barts, which is always packed with patients. There’s

usually a delay of at least forty minutes between

appointment times and actually being seen by a doctor.

Patients accept this because when you do see a doctor,

you get as much time and attention as is needed. I’ve


never felt rushed or cut short; whatever issues I have at

that moment are dealt with in full. This can sometimes

take as much as an hour of the doctor’s time—which

means people behind me in the queue wait longer. And

of course the costs to the Trust rise. So it’s not ineffi-

ciency but efficiency—if the measure is to be patient

care—that’s making Barts financially “unviable.”

Now there will be pressure on staff to process

patients more quickly. At the same time, there will be

fewer staff to deliver the service.

I hope staff at Barts resist this attack on their jobs,

and on the essential, life-sustaining services they pro-

vide. It’s often seemed to me that Barts survives on

their good will alone. They’ve already been hammered

by a steady fall in real wages, and there is a sad fatal-

ism among most, not helped by the patchiness of the

union presence across the Trust. What’s vital is that

they understand that what’s happening now is not

about failings at Barts; it’s a manifestation of the gen-

eral crisis in the NHS, a crisis brought about by cuts,

fragmentation, and privatisation, and one that can only

be addressed through a mass movement that forces a

radical redirection in government policy.


TA L K I N G A B O U T C A N C E R

J ULY 2013

Among cancer sufferers there’s often a shared moan

about how some friends or acquaintances “just don’t

get it,” some turn away and retreat, and some meddle

and proselytise.

Cancer sufferers all have their own pet grievances,

and I wouldn’t claim to speak for others. In fact, recog-

nising the variety of individual responses to cancer is a

necessary part of having, handling, and treating can-

cer. To revise Tolstoy, all healthy people are alike, all

unhealthy people are unhealthy after their own fash-

ion. We are all variants from a norm; that’s why we’re

being treated. So there are no uniform rules of the game

when it comes to talking to friends or acquaintances

who have cancer about their condition.


Take “you’re looking well” or variants thereof:

sometimes people do get a boost from such remarks, or

are at least relieved to know that they don’t look as bad

as they feel. But for me there’s always a disconnection: if

I really do look well (and I suspect that’s mainly because

I don’t look as bad as people expect or fear), then my

appearance belies reality: I’m not well; I’m ill. And there

are times when “you look well” feels like a denial, and

places you in the awkward position of having to deny

the denial (and say you may look well but feel like shit)

or to go along, keep up the pretence, and thereby sup-

press an underlying, insistent truth.

Some people feel buoyed when friends compliment

their “bravery.” Others, including me, find the bravery

rhetoric around cancer deeply misconceived. It shifts

responsibility on to the patient; if you succumb to your

cancer, or even if you just complain about it, are you

wanting in “bravery”? When someone tells me I’ve

been “brave” I don’t know what to make of it. There’s

no choice in the matter. This is a front line it’s impossi-

ble to flee from.

Then there’s “how are you?”, a casual enquiry, in

practice little more than a salutation, that acquires all


kinds of challenges for the person with cancer. How do

you answer? What does the person asking really want

to know? How earnest is the question? Responses

vary according to mood and context. Sometimes

I simply say “Okay,” either because at that moment

I can’t muster the energy required to give a meaning-

ful answer or because I’m unsure whether the inquirer

really wants to hear that answer. Sometimes, when I

do attempt to give a candid reply, I sense the inquirer

shrinking away, uncertain how to respond, how to

handle this discourse of pain and mortality.

While I don’t think there can be a protocol to gov-

ern this kind of dialogue, I would say that if you ask

someone with cancer how she or he is, do be prepared

to listen to the answer. And remember that listening to

it is nowhere near as uncomfortable as living with it.

Before I was diagnosed with multiple myeloma and

began my own journey through the labyrinth of cancer,

I was as insensitive as anyone to these issues. So I know

this question—how we talk about cancer—is not about

individual foibles. It’s not about making people feel guilty.

The situation, for both parties, is impossible: a conver-

gence of reticence and disquiet, closeness and distance,


helplessness and the desire to help. The conventions of

everyday language are stretched to breaking point.

While some of our difficulties in engaging in

this kind of dialogue may be rooted in the human

condition, I’ve also been asking myself how much

of it is peculiar to our own society. Surrounded by

commercial displays of young, trim, blemish-free

bodies, it’s easy to feel marginalised. Our culture

enjoins celebration and affirmation; huge efforts go

into the manufacturing of “feel-good” moments, one

succeeded rapidly by another. The affirmative act

becomes a social duty, a gesture that we, the ill, are

expected to make, and for which we are congratu-

lated.

Sure, even for the severely ill, there’s plenty to

affirm in life—wondrous works of art, sublime acts

of rebellion, love and friendship—but life is also arbi-

trarily cruel, and it’s an additional cruelty to ask people

to deny that reality.

A society that vaunts individual success, where

nothing is disdained so much as a “loser,” does not

quite know what to do with the ill or disabled. Unless

our suffering can be sentimentally packaged, or recast


as part of the neoliberal cult of “can do, will do,”

it remains unrepresented. The consumerist regime

generates a perpetual present, in which life is a succes-

sion of satisfied desires, without links to past or future.

Terminal illness cannot be accommodated within that

framework.

We lack the ritual and social contextualisation of

death found in pre-modern societies, and while there’s

no going back to that, an honest, self-aware, humane

society must find ways and means of integrating death

and suffering into its everyday norms.


S U R P R I S I N G LY , I ’ M S T I L L A L I V E

( A N O P E N L E T T E R T O F R I E N D S )

SEP T EM BER 2013

Dear friends,

My oncologists are very happy with me at the moment.

When I was diagnosed with multiple myeloma in mid-

2007, I was given a prognosis of three to four years’

survival. My prospects were particularly miserable

because the type of myeloma I have is associated with

rapid deterioration. Yet here I am, more than six years

later, a bit hobbled, but still able to live and enjoy life.

It seems I’m the beneficiary of an amazingly accel-

erated improvement in myeloma treatment. Hence the

oncologists’ delight.


To get to this point, I’ve undergone two stem-cell

transplants, repeated blasts of radiotherapy, and I’ve

lost count of how many courses of chemotherapy, plus

the bio-medical therapies of more recent vintage (taken

orally): thalidomide, Velcade, and now Revlimid.

All of these have taken their toll. None of them has

cured the myeloma. It’s always there, festering away. I

can feel the tumours in my back and chest. At any point

it could and one day will overwhelm me, but no one

knows when that will be. I’m now off the prognostic

charts, in a phase that myeloma sufferers who preceded

me never reached. It’s a strange feeling. Going where no

one has gone before, but at the same time headed quite

surely for the place where everyone goes in the end, and

probably sooner rather than later.

All I really know is that for the time being I’m

still here. But to be honest what’s most important to

me about this unexpected experience of survival is that

I still feel I have many things to do in this life: peo-

ple to love, causes to fight, books and articles to write,

maybe even places to visit. One thing I learned from

this whole ordeal is not to take that continuing engage-

ment with life, with all its unanswered questions, for


granted. There were certainly times in the last six years

when I felt being alive no longer offered that; it was

survival and nothing but. I know it’s hard to imagine

if you haven’t been in this position, but there are times

and circumstances when mere survival loses all appeal.

Of course I’m grateful beyond words to the many

people who got me to this point. The doctors, nurses,

technicians, receptionists, cleaners, and porters who’ve

cared for me at Barts and the Royal London. All those

past and present who built and sustained the NHS. My

partner in sickness and health, Liz, who’s accompanied

me through every phase of this labyrinthine journey

(and made sure I was taking the right pills on the right

days, not an easy task). My sister Susan, who donated

the stem cells for my transplant. All the scientists—

going back generations—whose research contributed

to the myriad therapies I’ve benefited from.

But not to Celgene, the U.S.-based corporation that

owns the license on Revlimid, and uses its monopoly to

charge the NHS extortionate rates for its product. The

cost of actually producing the drug is next to nothing,

but this year my Revlimid treatment alone will cost the

NHS more than £40,000. Like other drug companies,


Celgene claims its high prices are necessary to pay for

research and development, but frankly that’s crap. It

spends more on marketing and lobbying than on R&D.

Plus it boasts an extraordinary 26% profit margin, way

above the already-exorbitant pharma-industry average

of 17%. Who knew multiple myeloma could be such a

money-spinner?

One of the reasons I’m glad to be alive is that I can

have a go at these bastards.

In solidarity,

Mike


H E L D H O S TA G E B Y B I G P H A R M A

NOV EM BER 2013

In recent months, I’ve been taking a medication called

Revlimid, given as a “late therapy” for multiple myeloma.

Since it looks like I may be Revlimid-dependent for a

while, I decided to educate myself about the drug. As the

chemistry is beyond me, I focused my attention elsewhere.

The first thing I discovered was that Revlimid is

phenomenally expensive.

A single twenty-one-day cycle of treatment at the

lowest dose of 5 mg daily costs the NHS £3,570. As

the dose rises, so does the price: for a single twenty-

one-day cycle at the high dose of 25 mg, it’s £4,318. The

increment is small because the costs of actually manu-

facturing the drug are minimal. But whatever it is that


we’re paying for, we’re paying for it through the nose:

between £42,000 and £51,000 per patient for a year’s

treatment. This is a treatment we need, and to which

we have a right. That does not, however, mean that its

cost should be taken for granted.

Revlimid, it turns out, is a major profit generator

for a medium-sized pharmaceutical company called

Celgene, based in New Jersey. Though it directly

employs only four thousand people, Celgene’s 2012

revenues were $6.2 billion, up from $5.5 billion the

previous year. After taxes (at an effective rate of only

5%), profits on that revenue amounted to $1.6 billion, a

26% profit-to-sales ratio, high even by pharma-indus-

try standards.

Sales of Revlimid contributed more than $1 billion

to Celgene’s revenues last year, making it the company’s

biggest cash cow. The Revlimid patent extends to 2027, and

according to the company, “revenue is not near its poten-

tial peak.” (The drug has recently been approved for use

in China.) Not surprisingly, Celgene’s NASDAQ-listed

share price has risen steadily, up 113% in 2012.

Celgene also makes the version of thalidomide

used in the treatment of multiple myeloma, as well as a


new myeloma therapy called Pomalyst, licensed in the

U.S. and currently under review by NICE.

Who knew so much money could be made out

of multiple myeloma? It’s considered a rare disease,

accounting for only 1% of all cancers. Currently there

are about fourteen thousand people in Britain and

seventy-five thousand in the U.S. living with multiple

myeloma. Not a vast market, but clearly a profitable

one, though still only a sliver of the $1.1 trillion global

pharmaceutical industry.

Like other pharmaceutical companies, Celgene

claims its high prices are needed to sustain research

and development. However, like other pharmaceu-

tical companies, Celgene spends the majority of its

revenue not on R&D, but on sales, marketing, lob-

bying, legal fees, acquisitions, and of course distri-

bution of profits. In keeping with an industry-wide

trend, revenues and profits have grown faster than

investment in R&D.

Celgene can charge exorbitantly for Revlimid

because it owns an exclusive license to produce it. The

formula itself is easy to replicate, and if it were not for

legal restraints, the drug could be produced generi-

1 0 0 M I K E M A R Q U S E E

cally for a fraction of the cost. This multi-billion dollar

business is built on a state-enforced private monopoly

of an essential good.

On examination, the rationale for that monopoly

crumbles. Scientific research is cumulative and collec-

tive. The development of Revlimid was only possible

because of a chain of advances in molecular biology and

other disciplines. On what basis does the fruit of that

process belong exclusively to Celgene’s shareholders?

In a revealing trend, pharmaceutical companies

increasingly outsource core functions, including drug

discovery itself. This reduces fixed costs, but vitiates

the neoliberal argument that innovation is inextricably

tied to private ownership of the final product. It shows

that innovation can be paid for and rewarded as a sepa-

rate function, and that patent-holding exclusivity is not

a necessary component of the process.

According to Big Pharma, their corporate model is

the only way to advance research. Historically, however,

medical advances have largely depended on public insti-

tutions (hospitals and universities); the corporate model

is relatively recent. It is also a model compromised at its

scientific core. The reliance on capitalist incentive for

1 0 1T H E P R I C E O F E X P E R I E N C E

investment, as opposed to investment determined by

public need, distorts the field as a whole. Increasingly,

research is dictated by marketing. The aim is to produce

a profitable drug; R&D priorities are set accordingly. As

can be seen in the long-running resistance of Big Pharma

to full publication of clinical trials data, the imperatives

of competition put a brake on the sharing of informa-

tion, which is the basis of scientific advance.

Jonas Salk, who discovered the first polio vaccine

in the early 1950s, refused to take out a patent for the

drug. Explaining his logic, he asked rhetorically, “Could

you patent the sun?” He also noted that he had already

been paid for his work on the drug through his regular

salary as a university-based research scientist. (Not sur-

prisingly, he was placed under surveillance by the FBI.)

Celgene has been criticised for its involvement in

the American Legislative Exchange Council (ALEC),

a body described by John Nichols in The Nation as a

“collaboration between multinational corporations and

conservative state legislators.” ALEC’s causes include

reducing corporate regulation and taxation; privatising

public services; tightening voter identification rules and

making it harder for minorities, students, and the poor


to vote; minimising environmental protection; and

promoting gun rights. It’s also zealous for “tougher,”

longer criminal sentencing, which directly benefits

ALEC members like the Corrections Corporation of

America and the GEO Group, two of the U.S.’s largest

for-profit prison companies.

ALEC also promotes “stand your ground” laws

of the type used in Florida to justify the murder of

Trayvon Martin. In response to that atrocity, activ-

ists announced a boycott of Coca-Cola because of

its support for ALEC. Within hours, the company

announced it was ending its relationship with the

right-wing lobbying group. Others followed, includ-

ing Wendy’s, Kraft Foods, McDonald’s, Apple,

Procter & Gamble, and even Walmart. But not Cel-

gene, or indeed GlaxoSmithKline, Bayer, Pfizer, or

PhRMA (the pharmaceutical trade group). Alongside

Big Pharma, tobacco, oil, and energy giants also

remain committed to ALEC.

Responding to criticisms of Celgene’s support

for ALEC, Greg Chesmore, the company’s Senior

Director of State Government Relations, declared last

year that “participation in ALEC is consistent with


Celgene’s vision, mission, values, and fully aligned

with our commitment to improve the lives of patients

worldwide.” In a perverse way, that’s all true.

In July 2012, the Guardian reported that ALEC

had extended its operation to Britain, where it is

lobbying against plain packaging of cigarettes. So it

appears that some (admittedly small) part of the money

the NHS hands over every year to Celgene ends up

funding a campaign to undermine the health of people

in Britain, adding to the NHS burden.

So the NHS is spending a lot of money keep-

ing me going. It was indeed the “cost-effectiveness”

of Revlimid that made NICE initially reluctant

to approve it. After a vigorous public campaign by

patient advocacy groups, NICE changed its position,

and Revlimid was made available on the NHS. I’m a

beneficiary of this campaign, but so is Celgene. The

clamour to save or prolong lives like mine under-

mined NICE’s bargaining position and strengthened

Celgene’s. It’s a pattern seen in other controversies

involving NICE, where health charities collaborate

with pharmaceutical companies in pressing for rapid

approval of new drugs.


Of course, the very idea of determining the

“cost-effectiveness” of a life-prolonging treatment is

grotesque. What formula can possibly measure this

kind of value? But anger at NICE is misdirected. The

real problem is the extortionate prices demanded for

life-prolonging drugs, and the real culprits are the

pharmaceutical companies, who too often get away

with making NICE the fall-guy for their rapacity.

In effect, companies like Celgene are hostage-

takers: pay the ransom, they demand, or someone dies.

The ruthlessness is breathtaking, but it is accepted as a

corporate behavioural norm. What makes it more arch

is that the hostage-taker claims to be on the side of the

hostages. Though I’m one of those being held hostage

by Big Pharma, I’ve experienced no trace of Stockholm

syndrome. On the contrary, I resent the way my illness,

my vulnerability, has been exploited, used by a group

of self-serving parasites to gouge the public purse.


C R E D I T S

“Prologue: The Hospital’s Story.” First published in The Hindu

(India), August 26, 2009.

“A Conscript in the ‘War on Cancer.’” Versions of this arti-

cle appeared in Red Pepper, October 2009; and The Guardian,

December 29, 2009.

“A Tale of Two Health Systems.” Written in February 2010, this

article was originally commissioned for the Barts Trust official

website. However, directors of the Trust found it “too political”

and decided not to publish it.

“The Politics of Hypocrisy.” Versions of this article appeared in

Red Pepper and The Guardian, December 2010.

“False Economies.” First published in The Guardian, February

19, 2011.

“An Education in Dependency.” First published in The

Guardian, July 27, 2012.


“The Complicated Business of Surviving.” First published

online, www.mikemarqusee.com, August 2012; a shortened

version appeared in The Guardian, December 11, 2012.

“Memento Mori.” First published in The Guardian, April 6, 2013.

“A Crisis Contrived.” First published in The Morning Star, July

18, 2013.

“Talking About Cancer.” First published in The Guardian, July

31, 2013.

“Held Hostage by Big Pharma.” First published in The Morning

Star, November 18, 2013.

The price of experience : writings on living with cancer

Documents

Transcript of The price of experience : writings on living with cancer