AIDS: The first 20 years
AIDS: The first 20 years (part one)
AIDS: The first 20 years (part two)
AIDS: The first 20 years (part one)
by Simon Garfield
On 5 June 1981, an obscure medical journal reported a mysterious ill-
ness that had killed five young gay men in Los Angeles. It was the
first mention of what later became known as Aids. Since then, HIV has
infected almost 50,000 people in the UK. But now, thanks to new
treatments, it is no longer the automatic death sentence we once
feared. Simon Garfield, who's tracked the disease for the past dec-
ade, recounts the story of the holocaust that never happened and re-
visits some of the men and women who have lived to tell their tale
Special report: Aids
03.06.01: Britain braced for an AIDS explosion
Sunday June 3, 2001
Part one: The Memory
1 Dan versus Danny
Soon it will be time for Danny La Rue to sing. At the Pleasance thea-
tre in north London at the beginning of May 2001, the 73-year-old en-
tertainer stands onstage in a blue dress and high white hair and an-
nounces that he has been in show business for 51 years. He has some
personal observations about Bill Clinton ('He propositioned me in the
Oval Office!') and Zsa Zsa Gabor ('She was wearing so many feathers
you could have stuck them up her arse and she'd have flown home'),
and then he launches into a suggestive song he used to sing on the
Good Old Days. As he sings, the occasional glittery bead and sequin
drops from his dress. This, bizarrely, is rather good entertainment,
and is relished by an enthusiastic audience of sweet-smelling moneyed
gay men, tonight being a fundraising night for the Aids charity Cru-
Tickets cost GBP30 per head, including a smoked-salmon titbit in the
interval and a post-show video-signing session with Danny in the
foyer. The night is divided into two parts. In the first, 'Danny La
Rue' shimmies around doing his rude-marrow song and Marlene Dietrich
routine, and in the second 'Dan' comes out in black shirt and gold
medallion and slightly less make-up, and talks about his friendships
with Barbara Windsor, Ronnie Corbett and his eventful and unique ca-
reer as an actor, singer, club owner, window dresser and drag artist.
'I have never taken a frock home - not once,' he says at the very
start, lest anyone suspect he actually wore this stuff around the
kitchen. 'When I did Through the Keyhole, some young TV girl asked me
if I would come to the door wearing a frock and I said: "Fuck off!"'
He talks about his religious upbringing in Ireland, his memories of
60s Soho, his loving relationship with his manager Jack. He is
prompted by questions from the audience, written on pink cards during
the interval and collected in a champagne bucket. 'Ask him anything
you want!' the invitation said, so I asked him a question about Aids.
I wrote, 'This is a big night for Crusaid. How has your own life been
affected by Aids?' I was told that the questions were edited before
his warm-up man put them to him on stage, so I wrote on the top of
it, 'I love you, Danny! Please don't ignore this one!' He didn't, but
there was quite a pause before he answered.
'I have a Filofax,' he began. 'A very tired one. On one of the pages
all my friends have gone, and every time I try to put a pen through
their names I find it impossible. One of my dearest friends, Wayne
King [the flamboyant pianist], fell very unwell in Australia last
year. It took me 31 hours to get there, and I used that time to pre-
pare myself. He used to be such a brilliant, handsome man, and when I
met him he was very gaunt. He was about four or five stone. I spent
11 days from morning to night with him, and we got him walking on two
sticks. But then I had to leave, and I was working on a cruise ship,
and I got a call in the night that Wayne had passed over. He was two-
and-a-half stone. Bobby Crush was also on the cruise, and he did a
tribute to him - Wayne had a big hit with 'Cavatina', and when Bobby
played it, the audience went mad. Wayne would have loved it - he was
very vain and wonderful. Our friends.' At this point, Danny La Rue's
voice begins to crack. He resumes: 'This dreadful, dreadful disease
that has taken so many people away. I don't think anyone in this room
tonight hasn't lost a friend. One day, probably, it will all be some-
thing silly and we'll all be fine. I have a deep feeling that it will
all be fine.'
2 The toll
At the head office of the Terrence Higgins Trust in Victoria, the
prognosis is a little more precise. It is exactly 20 years since the
first reported case of Aids. Nick Partridge, the Trust's chief execu-
tive since 1991, has a file above his desk containing the most re-
cently published Aids and HIV tables. These figures, compiled by the
Public Health Laboratory Service and the Scottish Centre for Infec-
tion and Environmental Health, contain the cumulative data to the end
of March 2001. In the coldest of lights, they tell the history of the
disease over the past 20 years.
This is what the figures show: there have been 44,988 reported cases
of HIV in the last two decades, of which 14,038 people have died. Of
the HIV total, 25,806 are believed to have resulted from sex between
men, 11,667 from sex between men and women, 3,695 from intravenous
drug use, 1,351 from blood-clotting factor used predominantly to
treat haemophilia, 751 from mother to baby transfer, and 314 from
blood transfusion and tissue transfer (1,404 remain undetermined). Of
the 44,946 case reports in which sex was stated, 36,398 were men,
We may view these figures in a number of ways: a terrible tragedy, an
awful waste, the effects of HIV/Aids stretching far beyond those im-
mediately affected. But we may also view it as a relatively lucky es-
cape. For a number of reasons, the UK has not suffered from the dev-
astation that some once feared. The current rate of HIV infection is
still a serious cause for concern, but it is nothing compared with
the situation elsewhere in the world. The United Nations estimates
that 36.2m people worldwide are presently living with HIV, and that
20m people have already died from the virus. Cumulatively, this is
almost as many people as the entire population of the United Kingdom.
At the end of 2000 it was estimated that 25.3m people in sub-Saharan
Africa had HIV, 5.8m in South and Southeast Asia, 1.4m in Latin Amer-
ica, 920,000 in North America, 700,000 in Eastern Europe and Central
Asia, 640,000 in East Asia and the Pacific, 540,000 in Western
Europe, 400,000 in North Africa and the Middle East, 390,000 in the
Caribbean, and 15,000 in Australia and New Zealand.
The stories that come out of Africa - of negative population growth,
of battles with the drug companies for cheaper drugs, of the despera-
tion for even the most untried of vaccines - are the big Aids issues,
and appropriately figure large in today's news agendas. But the story
of Aids in the UK is an instructive one. From it we may learn much
about the nature of panics, about health education, about how a gov-
ernment talks to its citizens about sex and what citizens do when
they find out that sex can kill. And in a troubling way, we can learn
that even in the UK the story of Aids is far from over. This year it
is predicted there may be more than 3,000 new, avoidable infections.
Last year, when many with Aids were benefiting from great advances in
drug treatment, there were 3,434 newly reported cases of HIV. This is
more than in any year since the epidemic began.
When Nick Partridge, a gay man, considers the figures in his file he
remembers, among many things, a trail of disaster. 'The really key
thing to remember is how young everyone was, and how unusual and
shocking it was for us to see people of our own age becoming so sick,
so thin, and dying so quickly. The fact that it was also transmissi-
ble, and transmissible through the most intimate part of our lives,
quadrupled that shock. Before Aids, the doctors in the clinics and
hospitals were used to working in an environment where mostly they
were helping people get better.'
Above all, Partridge remembers the relentlessness: a continuous
stream of bad news, new terrors, heartbreaking funerals. 'For a long
while, Aids was the only thing in our lives.' And for many months,
the vast majority of the country knew almost nothing about it.
3 The terror
The first indication that something was wrong came from America on 5
June 1981. On the the second page of the Morbidity and Mortality
Weekly Report (MMWR) from the Centers of Disease Control in Atlanta,
there was a straightforward story that a rare illness, Pneumocystis
carinii pneumonia, had killed five young gay men in Los Angeles.
The pneumonia was not yet linked to another unusual symptom that had
also struck gay men in San Francisco and New York, Kaposi's sarcoma.
This was a cancer that usually only afflicted old men from Mediterra-
nean countries. It would be two years before a causative agent, which
came to be known as human immunodeficiency virus (HIV), was isolated.
Within weeks of the MMWR bulletin, the gay community began to do what
it had learnt to do very well: talk in secret. Before Aids was Aids
it was a 'gay syndrome' and then GRID, (gay-related immune defi-
ciency) and then ACIDS (acquired community immunodeficiency syn-
drome). There were many possible causes: recreational drugs, a ge-
netic predisposition, an overload of familiar sexually transmitted
diseases that had finally wrecked the body's defences. There seemed
to be one seriously advocated method of prevention: don't have sex
with Americans. Within a very short while, British gay activists and
medical researchers realised that Aids was already among them.
In 1981, Dr Tony Pinching, a 33-year-old specialist in the workings
of the immune system, helped to conduct a study at St Mary's Praed
Street Clinic in London. One hundred sexually active gay men were
asked intimate questions about their lives and took a battery of
blood tests. The men displayed none of the Aids marker illnesses that
had been evident in the United States, but their blood samples showed
many immune cell abnormalities and a decreased ability to fight off
disease. Within weeks, Pinching was seeing his first Aids patients.
These men were the cause of much speculation, and so Pinching asked
one of them to accompany him to a case presentation for fellow doc-
tors. 'I just wanted them to know that this wasn't a Martian,' he re-
membered. 'This was an ordinary bloke, only he happened to be a gay
man, so what. So he came in, and I can still hear the drawing-in of
breath, the hush that descended. Here was the moment of reality for
that audience; this wasn't just a strange disease that we read about
in the journals with a strange sort of people who do bizarre things.
This was an ordinary bloke, you could have met him anywhere, and he
was terribly straightforward.'
In London's genito-urinary medicine (GUM) clinics, highly confiden-
tial places frequently attended by those with infections such as
syphilis and gonorrhoea, gay men began appearing with purple lesions
on their faces and bodies, the telltale indicator of Kaposi's sar-
coma. 'It was very difficult to get them hospitalised,' one GUM doc-
tor told me. 'It was very difficult to get patients treated as normal
human beings. People were frightened; they thought it was contagious;
the patients had to be put in side wards. It was like medicine 600
Another young doctor, Ian Weller, remembered: 'The fears then were
not necessarily unfounded, as we didn't know what we were dealing
with. One night I was sitting in a patient's room [in hospital] and
this hand came round the door with food on it, and just dumped it. I
laughed with the patient, who said, "It happens all the time." Within
five minutes a bunch of flowers flew across the room - whoosh! That
time I didn't even see the hand.'
Not long afterwards, Pinching saw his first case of heterosexual
Aids, an English woman whose husband had been having sexual contact
in Africa. 'That told us that there was going to be a heterosexual
epidemic,' he says, although it took time convincing government
health officials. One said, 'Where's the epidemiology?' Pinching re-
plied, 'Well, I'm telling you the anecdote, and today's anecdote is
tomorrow's epidemiology. Your move.'
One of the earliest male patients was 37-year-old Terry Higgins, a
computer programmer. His partner, Rupert Whittaker, recalled that
Higgins had complained of frequent headaches and that he was prone to
collapse and unfamiliar symptoms. At the hospital, Whittaker remem-
bered the doctors as dismissive: 'I was not next of kin - I was not
worth considering.' One of the house staff told him that if he wanted
more information he should wait until the case was written up in one
of the journals.
Five months after Higgins's death in July 1982, Whittaker and a group
of his friends founded a new charity to raise money for research, be-
ginning with a themed party at the gay nightclub Heaven. The news of
the charity, and the fact that three other Londoners had died from
Aids, was announced in Capital Gay under the headline 'US Disease
Hits London'. Another publication, Gay News, wrote how most people
still thought of Aids as 'a media import, like Hill Street Blues'.
The early meetings of the Terrence Higgins Trust took place in the
London flat occupied by Tony Whitehead. Whitehead was a teacher and a
member of Gay Switchboard, and along with a few friends, a few of
whom were medics, he organised more fundraisers and public meetings.
He also helped produce the Trust's first Aids information leaflet. It
began by outlining the symptoms: swollen glands, fever, night sweats,
pink to purple lesions. Other sections were helplessly naive. There
was no mention of condoms or the risks of anal sex. 'Have as much sex
as you want,' it stated, 'but with fewer people and with HEALTHY
PEOPLE.' The leaflet concluded with the message 'Help yourself!' The
subtext was: because nobody else will.
'I don't mind telling you, I was very, very scared,' Whitehead remem-
bered a few years later. He described the educational and support
work of the Trust and other gay groups as 'essentially a crucial sur-
vivalist policy formulated by a community that believed it was being
left to slowly die'.
In the spring of 1983, BBC Horizon made a film called The Killer in
the Village concerning the situation in the New York. It was one of
the first programmes with the message that gay men's lives were worth
taking seriously, and it raised many unanswerable questions. Martin
Amis reviewed it in The Observer: 'With Aids. it seems to be promis-
cuity itself that is the cause. After a few hundred "tricks" or sex-
ual contacts, the body just doesn't want to know any more, and nature
proceeds to peel you wide open. The truth, when we find it, may turn
out to be less "moral", less totalitarian. Meanwhile, however, that
is what it looks like. Judging by the faces and voices of the vic-
tims, that is what it feels like, too.'
Within a few months, it was clear that the (as yet un-isolated) virus
had already found its way into other sections of the population. By
the end of 1983, two British haemophiliacs had been diagnosed with
Aids. In November, the health minister Kenneth Clarke declared that
'there is no conclusive evidence that Aids is transmitted by blood
products', but there were worrying signs from America. Sixty per cent
of the UK's blood-clotting concentrate Factor VIII was imported, most
of it from the United States, where donors were paid for their blood;
some US-supplied plasma may also have been gathered from Africa. Be-
fore a screening test became widely available, there was no way of
knowing; the British Medical Journal reported that the majority of
opinion held that the risk of a person with haemophilia suffering a
haemorrhage by not receiving their clotting agent far outweighed the
risk of contracting Aids from it.
The true picture only emerged in the middle of 1985. Dr Peter Jones,
the director of the Newcastle Haemophilia Reference Centre, tested 99
of his patients with severe Haemophilia A, all but one of whom had
received commercial Factor VIII. Seventy-six tested positive for HIV.
Jones had befriended these patients over many years, and now had to
tell them the news. 'You see a child who five years ago you knew was
going to live a normal, lengthy life and a high-quality life, and
he's suddenly infected and dying. You feel anguish for a nurse who's
taught somebody how to inject themselves, or has injected them her-
self, and then she realises she must have been injecting the virus at
the same time. And it must be horrible to be a mother who's done that
to her son.'
Dr Jones's patients were part of a total of almost 700 haemophiliacs
who were HIV positive at this point, and by the end of 1986 there
were 1,062 reports of infection among haemophiliacs or those who had
received a transfusion or tissue replacement. A few of their partners
were also infected. When the extent of the problem first appeared,
Barney Hayhoe, Conservative minister for health, announced with ro-
bust authority that 'Aids is a very serious disease.' He considered
it 'vital we do all we can to control the further spread. and to help
those who have already been exposed'. And so a prolonged battle for
In Edinburgh, another calamity was unfolding. An informal Lothian re-
gion Aids group had obtained some testing kits from the United
States, and used them on stored sera from local haemophiliacs. A few
came up positive, which was surprising because Scotland had been
self-sufficient in blood products for several years. The tests were
repeated, this time using injecting drug users as a control group. A
vast number of the drug users had HIV.
In subsequent tests, the prevalence of HIV infection was 50 per cent
or higher. Of the 3,695 HIV cases resulting from intravenous drug
use, 1,173 are believed to have been acquired in Scotland, the major-
ity in Edinburgh. This represents more than one-third of all the
3,022 HIV cases in the region. The reasons for this are rooted in
three concurrent events of the early 80s: the increasing popularity
and cheap supply of heroin; the methods by which heroin was injected
(a system known as 'booting' or 'flushing' whereby the drug is washed
out of the syringe into the bloodstream by repeatedly drawing back
the plunger and injecting the user's own blood), and the frequency of
sharing equipment owing to the difficulty of obtaining sterile nee-
dles. The Lothian and Borders police had been tough on drugs for
years: along with drugs, all drug paraphernalia was also seized, and
chemists and other surgical suppliers would be prosecuted if it was
believed that their equipment could find its way to drug users. And
so people shared their needles and spread disease. In fact, grim ex-
perience with an earlier hepatitis outbreak showed that there was no
more efficient way of doing so; in one particular story, a needle was
passed around one estate in Muirhouse for three months.
In the tabloid press, hysteria raged. The story of the haemophiliacs
presented a handy counterpoint to those concerning homosexuals and
drug addicts. The prejudice was transparent: gay men and drug users
had brought the disease upon themselves and deserved condemnation,
while haemophiliacs, the 'innocent' victims, deserved all the sympa-
thy and compensation; at last, some papers found a way of legitimis-
ing their homophobia. And so a woman was scared because a plumber she
thought was gay had recently fixed her cistern; pathologists refused
to conduct autopsies; firemen banned the kiss of life; footballers
wouldn't share the communal baths at Wembley; you could get it from
Communion wine; BT engineers refused to fix the phones at a lesbian
and gay advice centre for fear of catching Aids from the wiring. And
in the pub, the jokes: How many gays does it take to change a light-
bulb? None: in intensive care they do that kind of thing for you. And
what turns fruits into vegetables?
4 The iceberg
At the close of 1985, the Conservative government decided it could
ignore the problem of Aids no longer. Gay activists had already
mounted their own health education campaigns with vigour and success
for three years, but their funds were limited and their efforts were
often marginalised and censored. Many gay men believed they were be-
ing left to fend for themselves, and lobbied for a nationwide health
education programme that would de-stigmatise what was still widely
regarded as a gay disease; from now on, HIV became an 'equal opportu-
nity virus'. The campaign that resulted featured television adver-
tisements that none who saw them would easily forget.
Mrs Thatcher, who had rarely expressed much interest in the plight of
gay men, had finally been persuaded - in part by the plight of haemo-
philiacs, in part by the frantic attention of the press - that some-
thing might have to be done for the population as a whole. Person-
ally, she found the subject distasteful, and delegated the subject of
Aids first to Norman Fowler, the Secretary of State for Social Secu-
rity and later to Deputy Prime Minister William Whitelaw. Both re-
ceived the shrewd advice of the Chief Medical Officer Sir Donald
Acheson and a group of vociferous doctors who had seen the early
stages of an epidemic on their wards.
The problem was, the government had not addressed its people about
sexual health since it had tackled the issue of syphilis during the
First World War. The language of the bedroom, much less the backroom,
was not something it felt entirely at ease with.
The first Aids campaign was to take the form of full-page newspaper
advertisements over one weekend in March 1986. Almost five years into
the epidemic, a group of earnest people thus sat down at the DHSS to
discuss the topic of anal sex. According to one civil servant, one
minister 'had real problems. He was deeply ignorant about sexual mat-
ters - he was unable to pronounce "vagina". You've no idea what a
problem it is to talk to someone who doesn't believe in sex anyway.'
On another occasion, the subject of oral sex arose. 'Oral sex?' one
minister asked. 'Do we know how many people do this sort of thing?'
What readers finally saw in the newspapers was almost unrecognisable
from earlier drafts submitted by the agency TBWA. The text was pre-
ceded by a warning, signed by the four chief medical officers, that
what was to follow 'may shock but should not offend you as we are
talking about an urgent medical problem'. At this stage, there were
about 7,500 cases of HIV.
One of the drafts contained the following frank explanation: 'During
sexual intercourse, minute breaks may occur in the walls of the va-
gina. It is through these that the infected semen passes. As the rec-
tum is far more delicate than the vagina, it is more easily damaged.
This means anal intercourse is the easiest way of being infected.'
But this was excised from the final version on the firm instruction
of Margaret Thatcher. On her suggestion, the term 'anal intercourse'
became first 'back passage intercourse' and finally the approved
'The department tried to keep her out of it as much as possible,' one
civil servant remembers. 'At one point, after she had seen a draft,
we got a message from Nigel Wicks [her Principal Private Secretary]
which said, "She wants to know if they have to go in the newspapers."
We asked him where else they were supposed to go. He said, "She was
wondering about lavatory walls."'
There was no mention of the words 'condom' or 'rubber', both of which
were considered too explicit. Instead, use of a 'sheath' was advised,
a word that many people cruising the clubs had never heard before.
Even Norman Fowler would soon acknowledge that the advertisements had
little effect. One survey of 300 people at Southampton General Hospi-
tal suggested they may have been damaging: before the campaign, 5 per
cent thought there was a vaccine against Aids; after it, 10 per cent
did. Before, 10 per cent believed the infection could be spread by
sharing eating and drinking utensils - this had risen to 14 per cent.
And so a bigger, brasher new GBP20m campaign was announced, and John
Hurt's agent was called about availability. Now, fear was the key.
'There is now a dreadful disease,' Hurt narrated against a backdrop
of icebergs, tombstones and exploding mountains. 'It is a danger to
us all. Anyone can catch it through sex with an infected person. You
can't always tell if someone is infected. You should protect yourself
against it. Don't die of ignorance.' The final frame was of a tomb-
stone with 'Aids' chiselled on it, an image which graced the front of
another unprecedented public education campaign: a leaflet dropped
through every letterbox in the country. The wording again caused
sleepless nights. In the hope of not offending the elderly, there was
talk of withholding the leaflets from anyone whose first name was
Gladys, Albert or Daisy.
In this way, the United Kingdom went from a country, which publicly
talked about Aids very little to one which could talk about nothing
else. The late newspaper columnist Peter Jenkins wrote of one meeting
with the Cabinet Secretary Robert Armstrong at which 'anal sex was
mentioned during the avocado, buggery in Her Majesty's prisons as we
ate our beef'. His colleagues predicted doom: 'Aids: The New Holo-
caust' ran a headline in The Sunday Telegraph.
The projections of Aids death multiplied each week; towards the end
of 1986 it was reported that there were already more than 100,000
people infected with HIV who didn't know it. New advertisements soon
appeared with a slightly lighter touch: in one, the word 'Aids' was
gift-wrapped in festive paper, and beneath it ran the words 'How many
people will get it for Christmas?' Another showed a T-shirt with 'Sex
& Drugs & Rock'n'Roll' scrawled across it; beneath it was the message
'At least rock'n'roll can't give you Aids.'
The campaigns were accompanied by a week of educational and Aids in-
fotainment programmes on television, during which anyone who was any-
one turned up to put condoms on cucumbers. In time, health educators
did find a way to speak to those they most needed to reach. The words
'arse' and 'cock' appeared in government-financed campaigns aimed di-
rectly at gay men. Even the general public would soon learn 'It only
takes one prick to give you Aids.'
It is still impossible to gauge the effects of this unprecedented
care-a-thon on the sexual behaviour of a nation. The first adverts
are principally remembered for causing panic and confusion, but it is
agreed that even the most cautious, nervous education was better than
doing nothing. Another question is: what was happening to the people
for whom the campaigns had already come too late?
Guardian Unlimited c Guardian Newspapers Limited 2001
AIDS: The first 20 years (part two)
Special report: Aids
03.06.01: Britain braced for an AIDS explosion
Sunday June 3, 2001
Part two: The Present
5 The escapologist
Above all else, Tony Whitehead knows one thing for certain: he should
be dead by now. Whitehead is 47, still handsome with silvery hair,
not as agile as he was. He was diagnosed HIV positive in 1984, as
soon as the first primitive test became available. 'I did have a real
sense of foreboding,' he says. 'It was often a strong personal sense
of foreboding, which is why I was so strongly motivated to do some-
thing with the Trust. I would have felt terrible if I had the oppor-
tunity to do something and hadn't. But it wasn't all altruism: being
at the forefront benefited me enormously. I knew all the doctors and
exactly what was happening. With Aids, as in so much else, informa-
tion is power.'
He is sitting in the bright flat near Olympia he shares with a long-
term partner, also infected. His eyesight is poor, and he jokes of
how he has a magnifying glass stuck down the side of every chair. He
looks back with horror and wonder: 'Quite how everyone's life would
change was impossible to foresee, not least how our lives would be
suddenly defined in terms of medicines and hospital appointments.' A
great many of his friends died in the late 80s and early 90s. He is
the only person he knows to have had the virus for so many years.
His first symptom of Aids showed itself in 1993 - a purple mark on
his chest. 'I had lived with the thought that I would develop Aids
for so long that it didn't worry me at all.' In April 1994 he went
hiking and canoeing in Zimbabwe, but it was when he returned that he
noticed something unusual.
'I know a lot about Aids,' he remembers thinking, 'but what was hap-
pening to me was like nothing I had ever heard of. I was finding ter-
rible weakness in my legs, and losing my balance. I got down in a
crouch and couldn't get up. I rapidly got worse.'
This was followed by chest pains and high fevers and frequent hospi-
talisation. He lost the sight in his left eye, and the peripheral vi-
sion from his right. He received injections directly into his eye,
which he says made it look like a piece of steak.
Drugs didn't seem to help much. There had been some improvements in
treatment since the first toxic Aids drug AZT had emerged with some
fanfare in 1987, but their efficacy was usually modest and their
side-effects often severe (AZT has been discredited as an effective
sole treatment, although it is generally effective in preventing the
transmission of HIV from mother to baby). Tony Whitehead took AZT in
combination with 3TC, both drugs acting as dummy building blocks that
disrupted the construction of infected DNA. But his immune system
failed to respond. His count of CD4 T-cells - the white blood cells
that play a key part in the orchestration of the body's immune sys-
tem, and which in a healthy person stands at between 500 and 1,200 -
had fallen to zero. He was, he believes, very close to death. But
then something came along that has transformed the whole story of
Aids in the developed world.
In 1996, Whitehead was one of the first to try what would become a
revolutionary new treatment. He was given a new drug, called a prote-
ase inhibitor, to be taken alongside his other pills. This drug,
indinavir, worked against HIV in a different way to the older anti-
retroviral treatment, attacking another, later stage of HIV reproduc-
tion, essentially blocking any virus that escaped the attentions of
the earlier drugs. It took a few weeks for this new combination ther-
apy to take effect, but then the improvement was dramatic; his CD4
cell count recovered, it became possible to consider resuming a nor-
mal life. He was already feeling better when the trial results of
this new treatment were announced to thunderous applause at the In-
ternational Aids Conference in Vancouver in July 1996. This was
clearly the breakthrough that everyone concerned with Aids had been
waiting for; within months, the death toll began to fall dramati-
'Oh, I think there's no question that they saved my life,' Tony
Whitehead says. When I first visited him at the beginning of 1997, he
was taking 17 different pills per day, and there was a strict regime
of compliance. There were also other pills to alleviate the side-
effects of drowsiness and nausea, and he was unable to eat anything
containing fat two hours before or one hour after he had taken them.
Today, this burden has decreased and his drugs have changed. The
indinavir began going wrong after 18 months, so his doctors augmented
it with an additional fourth drug. 'Within a few weeks, everything
was going haywire. The blood results were terrible, my blood was like
goose fat or something, and I was getting chest pains.'
But then a new successful combination was found - d4T, 3TC and dmp266
(efavirenz) - and his CD4 count went back to 600. He now takes seven
pills - two at 9am and five at 9pm. 'The ones I take at night have
given some people some very wild dreams,' he says. 'But my dreams
have only been pleasant - flying over islands, swimming with fishes.'
Recently, Whitehead's doctors at the Chelsea and Westminster detected
gentle signs that he may be becoming resistant to efavirenz, but this
is something he takes in his stride. Soon, he hopes, there will be
something else to replace it.
He says he manages all right on income support and disability allow-
ance. 'I try to accentuate the positive, because I remember what
things were like before. Now we get out and about; we have lunch out
sometimes; I did a Spanish A level last year - didn't do very well,
but I passed. But having said that, this isn't how I wanted to be.
I'd have liked to have gone to work and pursued a career and earned a
good living and all those things that most people are able to do.'
Whitehead maintains contact with the Terrence Higgins Trust, the or-
ganisation he once used to run. Later this month he plans to attend a
fundraising dinner at the Hilton, and he'll work his table and tell
his story. 'They don't wheel me out very often,' he says. 'A lot of
people don't know who I am now.'
Across London, in a garden heady with flowers, a woman called Caro-
line Guinness is also on efavirenz, and it's been a similarly event-
ful journey to the drug. She tested positive in 1986 after sleeping
with a bisexual man, but remained healthy for a prolonged period. She
worked in music management and films, and helped organise the first
big Aids fundraising concert at Wembley Arena in 1987: Holly Johnson,
Boy George, Jimmy Somerville. Elton John sang 'Will You Still Love Me
She became ill in 1995. There was muscle wasting, chronic fatigue,
night sweats, hair loss. She then contracted pneumonia, and e-coli
septicaemia 'which just about finished me off'. She had been resis-
tant to taking drugs, but now had no choice; even before the triple-
combination breakthrough with protease inhibitors, her dual combina-
tion of d4T and 3TC worked well, at least for a while.
'After 18 months I began to get lipodystrophy, that strange condition
where all the fat on your body gets redistributed - from your bum and
legs and arms it all goes to your stomach and breasts. It's a weird
thing, because you feel very well but you look like someone suffering
Many other people presented with this, a side effect from one of the
drugs. Her new cocktail seems to be working better, although she is
aware of reports that indicate long-term toxicity. She has a teenage
daughter who has not contracted the virus, and who has invited her to
address her A level classmates about her life. Her mother has given
these types of talks before, often to medical students. 'I give them
advice about how people with HIV like to be treated,' she says. 'I
tell them there is still plenty of bigotry and racism, and explain
that if they come across as an understanding person they're far more
likely to be told the truth. Then I talk about my story, which now
encompasses 15 years, and so takes quite a while.'
The first question the students always ask her is about relation-
ships. 'Recently my husband has come along, so I tend to point him
out. Life does go on. But then I tell them that I still can't get a
6 The new world
The chief executive of the Terrence Higgins Trust is being asked to
do something he doesn't get asked to do very often: to reflect on a
British success story. The new drugs have meant that Nick Partridge
has not attended a funeral for almost two years, whereas once he went
many times a month. But beyond the new treatments, there are other
reasons why he has had to reconsider how his charity provides its
services, other peculiarities of the British Aids epidemic that en-
sured we have not seen his worst fears realised.
'We had some advantages. We had a shared language with the country
that was most immediately affected; there were very close links in
both the gay community and the medical community between the UK and
the United States. And the GUM [STD] clinic network was being well
used by those gay men who were most likely to become infected, so
there was one healthy and immediate link between the medical commu-
nity and gay men.' There are others: the appointment of Sir Donald
Acheson as Chief Medical Officer, a forceful, diplomatic man with a
good grounding in epidemiology; the implementation of needle-exchange
programmes for drug users; the impact of a trip that Sir Norman
Fowler took to San Francisco in 1986, where the scales fell from his
Partridge observes that the impact of HIV has coloured many aspects
of British society in unexpected ways. It has changed the way we talk
about sex, the way patients interact with their doctors, the way
treatment activists interact with drugs companies. It has increased
the visibility of gay men. 'There is a huge difference between [Lon-
don's] Old Compton Street or [Manchester's] Canal Street then and
now,' he says. 'In 1982 there was not a single gay bar which didn't
have smoked or blacked-out windows.'
Last October, the Terrence Higgins Trust became Terrence Higgins
Trust/Lighthouse, the product of a merger with the west London hos-
pice and treatment centre. In recent months the Trust has also nego-
tiated mergers with 10 other Aids charities, another indication of
the changing priorities in the wake of combination therapy. One of
Partridge's tasks is to help people re-engage with society and work
again. 'To see a 70 per cent drop in the number of people dying in a
two-year period was wonderful,' he says, 'but it doesn't mean that
the personal impact of the epidemic has changed for that many peo-
ple.' Those who benefit have had a large impact on drug costs in the
NHS - up to GBP10,000 per patient per year - which has squeezed budg-
ets for long-term support in the home and future prevention cam-
paigns. While care in London has been generally good, the regional
picture has been far more patchy.
Partridge says he has several significant challenges. He hopes to de-
velop better services for Africans with HIV in the UK and promote
health campaigns among other communities at risk. And he must try to
engage younger gay men again. 'If you were 18 now you'd have been
about four when the icebergs were on telly,' he says. Despite the vo-
ciferous efforts of several gay activist groups, many now view Aids
as an old man's affliction. Recently there has been an increase in
the number of sexually transmitted diseases, which suggests a lack of
There is also the risk of being infected with a new drug-resistant
strain of HIV. 'We have all the elements for a potential second wave
of an epidemic,' Partridge believes. 'The lesson from abroad is that
if you do nothing, HIV spreads with remarkable speed. You only have
to look at Africa to be absolutely convinced that you can't walk away
from Aids work, because it will come back to haunt you in the most
terrible of ways.'
There is another problem: most people just don't care much any more.
Despite the record increase in HIV infections last year (and the 493
new reports in the first three months of 2001), Aids is widely seen
as yesterday's disease; red ribbons aren't much of a fashion acces-
sory these days. Accordingly, public fundraising is very difficult.
As with most causes, it is hard to overestimate the continued impor-
tance of celebrity. The Terrence Higgins Trust acknowledges that even
the presence of Tamara Beckwith rattling a bucket in Selfridges makes
people more likely to donate. It is entirely possible that most peo-
ple's understanding of the effects of Aids comes not from information
campaigns, but from the HIV storylines in soap operas and the deaths
of famous people. In America, the message hit home with Rock Hudson;
in the UK it was Freddie Mercury. Princess Diana also made a differ-
ence - her bedside vigils, her handshakes with Aids patients, the
message that Aids was a virus not a crime. Those who raise money for
Aids say that her death robbed them of an ambassador who has yet to
be replaced. Elton John? Some generous and invaluable work, quite
clearly, but as yet he is still not a member of the royal family.
Five days after the Danny La Rue extravaganza, the events manager at
Crusaid was fielding calls about the Barbra Streisand film that eve-
ning at Planet Hollywood. 'I could have charged twice as much,' says
Michael Berg. 'It sold out within 24 hours and people have been going
Since its formation in 1986, Crusaid has raised GBP19m, distributed
to such diverse organisations as Positively Women, the Uganda Youth
Support Unit and the African Church Leader's Programme. On Michael
Berg's walls are the souvenirs of some recent events: premieres of
the big musicals, an audience with the writer Armistead Maupin, ce-
lebrity auctions where you can buy something unusual from Graham Nor-
ton. Last November, bucket collections by African performers at the
end of The Lion King raised GBP 36,000.
'Last year we worked hard and we did OK,' Berg says, 'but the climate
has changed. The days when people would come to any event just be-
cause it was Aids have long gone. You have to offer people something
they really want.' He estimates that the Danny La Rue show will raise
in excess GBP 5,000.
Berg mentions a troubling Mori poll conducted at the end of last
year. Among other things, this asked members of the public two ques-
tions: would you give time or money to cancer charities? Eighty-four
per cent said Yes. Would you give time or money to an Aids or HIV
charity? Eighty-six per cent said No, under no circumstances.
Why does he think this is?
'Who knows? I guess people think it's over.'
7 The view from Barts
At the end of May 2001, Tony Pinching can be found in the same office
he worked in when the epidemic was young, but the name of his em-
ployer seems to have changed every fortnight. In this feverish cli-
mate of merger and management restructure, he is now Professor of Im-
munology at St Bartholomew's and the Royal London School of Medicine
and Dentistry, Queen Mary.
For Pinching, well versed in the extensive biography of disease, the
Aids epidemic is still young, two decades after it was first ob-
served. But the advances have been considerable. 'If you look at it
in terms of the stick of rock of medical history, the drugs came in-
credibly fast,' he says. 'You just don't normally get from the dis-
covery of a disease to a transforming treatment in a period of 15
years. Incredibly slow, of course, for the people in the first waves
of the epidemic, but in the wider context, it was remarkable. I think
it justifies that early advocacy for putting considerable money into
basic research.' Pinching is also more optimistic than he has been
for years that the technical barriers to vaccine protection maybe
surmountable, although a fully protective vaccine that all countries
can afford is still many years off.
When he looks back to his first patients, he remembers learning vast
amounts from them: 'It was clear that they were telling us things
that were going to guide us for the next 20 years.' He would use this
knowledge to inform his discussions with ministers and the Department
of Health in the first tender steps towards the public information
campaigns. Justifiably, he feels a sense of achievement. 'I think the
approach that was followed in this country was broadly right and rea-
sonably accurate, although sustained intermittently. The flat-
earthers will say that the worst-case scenario would never have hap-
pened anyway, but I think the public health campaigns made a substan-
tive difference. If you look at some countries in southern Europe
that did not engage in such sustained campaigns you can see that they
got into a much worse epidemic. I think it's sad that we've never
celebrated that, because the tenor of debate in this country is al-
ways so pervasively negative.'
At the beginning of 1999, the UK had 16,468 cases of Aids, compared
with 50,112 in France, 43,936 in Italy (mostly drug users) and 18,479
In the last few years Professor Pinching's caseload has changed. The
majority of new infections is in African heterosexuals; we are palpa-
bly part of the epidemic that is happening in the rest of the world.
'It's quite wrong to think that the real problem is over there, be-
cause it's over here, too,' he says. 'I feel that very strongly here
in east London, where we see people presenting with late disease, the
sort of stuff we saw right at the start.'
His African patients are a potent reminder: the drugs have come too
late for many, and are unusable by others; for all the improvements
in education, an incalculable number of people are not being reached;
the UK epidemic has some way to run.
'The imperfections of human beings and the imperfections of knowledge
are such that we will inevitably give HIV opportunities to escape,'
Professor Pinching says. 'The question is, can we always stay ahead
of it enough?' After 20 years, he reckons it is still too soon to
* For a comprehensive guide to symptoms, treatments and further
sources of information on HIV and Aids, go to http://www.aidsmap.com.
The Terrence Higgins Trust/Lighthouse can be reached on
Other useful links
NHS Direct Online HIV/Aids
British HIV Association
Guardian Unlimited c Guardian Newspapers Limited 2001
[ Reproduced under fair use by C. Labadie
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