Can the irrepressible Anita Roddick do for
hep C what she did for the Body Shop? Amanda Elliot spoke
to the legendary social entrepreneur about life with hep C and her next big
mission
I
have hepatitis C. It’s a bit of a bummer but you groan and move on,”
Dame Anita Roddick told the world with characteristic pragmatism on Valentine’s
Day 2007.
The UK’s most successful businesswoman was infected with hep C 18 years
before the virus even had a name. She got it from a blood transfusion in 1971
after the birth of her youngest daughter Sam
In the three decades that followed, Anita raised two children, conquered the
world with her Body Shop brand and pioneered ‘vigilante consumerism’.
She also energetically battled injustice where she found it, from Guatemala
to Seattle, all the while blissfully unaware the virus was replicating in
her body and mounting a silent but devastating onslaught on her liver.
Reality check
Dame Anita was diagnosed three years ago during a routine medical insurance
check- up. She has recent cirrhosis (scarring of the liver) that damages the
organ’s ability to carry out hundreds of essential functions including
ridding her body of toxins and fighting infections. A transplant at this stage
is the only long-term option to stop end stage liver disease or liver cancer.
Dame Anita lives in rural West Sussex only a few miles from the hospital where
she was infected. Her reproduction Georgian home is everything you would expect
from this vibrant and eclectic figure: vineyards and life-affirming statues
dotted around the gardens; pictures of Yopi snake dancers in the loo and a
Banksie print of Queen Victoria in suspenders given pride of place in her
welcoming kitchen.
Speaking with Dame Anita a week after her shock announcement, I asked if she
was as unfazed by the diagnosis as she had made out in her press statement.
“I didn’t feel anything. I had utterly no reaction because I didn’t
understand what it meant to have hep C or what it was. I had a vague idea
there were different types with letters like A, B and C and one was linked
to unsanitary conditions - but that was it. What was there to fear? It was
only after doing my own research that I had a reality check.”
Ignorance
“My ignorance at the time of my diagnosis says a whole lot about the
government’s commitment to raising awareness about hep C,” she
says.
It’s clear Anita has a new mission, and this time it’s personal.
She plans to draw on her extraordinary energy and not inconsiderable fortune
to push hep C up the government agenda and challenge the “air of indifference”
hanging over the subject.
“For me it’s important to make a good job of this campaign. Media
headlines are important but ephemeral. The real work starts after these have
gone; strategy and tactics are everything. This is exactly my role.”
Dame Anita is off to a flying start: becoming patron of the Hepatitis C Trust
and handing them her £45,000 statutory compensation from the NHS for
receiving a tainted blood transfusion and developing cirrhosis as a result.
It’s a real coup; the trust and clients can benefit from the flair and
expertise of one of the world’s highest profile and most passionate
campaigners.
“The Hepatitis C Trust has been a great resource for me. It was the
first place I went to. It is a patient-run charity and encourages people to
take control of their own health. I like that.”
Millions infected
They have their work cut out. Estimates suggest up to 500,000 people in the
UK have chronic hepatitis C but only one in ten is diagnosed. The remainder
risk serious liver disease and unknowingly infecting others. Unlike hep B,
there is no vaccine.
There are around 7,000 new diagnoses every year in the UK. Worldwide some
300 million people are infected. The World Health Organisation says the virus
is responsible for 50 to 76 per cent of all liver cancer cases, and two thirds
of all liver transplants in the developed world. People co-infected with HIV
and hep C are far less likely to clear the virus naturally and are far more
likely to develop chronic infection and liver disease.
The immediate concern is getting people to test.
“Anyone who had a blood transfusion before 1991 or has received medical
or dental care abroad in countries with high prevalence of hep C should test.
If they are in any doubt they should get tested,” she says.
Missiles
and money
“On any level, hep C is a far greater threat to public safety than terrorism.”
She talks of a “sinister wall of silence” about the subject and
at her shock at finding no leaflets about hep C in the GP surgery.
“If there was more awareness more people would test. I suspect the government
is indifferent because it will get a massive bill for treatment and care.
“I am astounded how they say they have no money for hep C and then suddenly
find £76 billion for Trident just because someone carries a pen knife
onto a plane. They have shed-loads. I am all for moving the money.
“The new advertising campaign is a step in the right direction but it
really concerns me it was rushed out without consultation with patients in
order to squeeze it into this financial year. And there’s absolutely
no guarantee of anything after 1 April. This is such a massive problem it’s
certainly not going to get sorted in five weeks.”
Stupid stigma
Since her very public disclosure, Dame Anita has had invitations from the
White House and the EU to discuss the subject. She is also talking to the
BBC about a documentary. But so far no other celebrities have stepped forward
to declare they have hep C too. “I expected a flood. There must be many,
people out there. We need others to speak with a collective voice.”
“I am really surprised at the stigma attached to hep C. It is closely
associated with self-injecting drug use and the prejudices that go with that.
But in the end it’s just a goddamn blood-borne infection. Stigma hadn’t
even crossed my mind but it keeps people from speaking out.
“We need a hell of lot more resources for awareness raising, challenging
the stupid stigma that surrounds hep C. This is just the same as the way that
stigma prevented people with HIV from getting a fair deal.”
Toothbrushes and body piercing
“It’s not just about IV drug use. Anyone can get it. It can be
passed on with such ease and often in seemingly mundane ways like sharing
toothbrushes, razors, hair clippers or having tattoos, body piercing or dental
work with unsterile equipment. There’s also a risk when sharing notes
to snort drugs like cocaine and crystal meth. You can even contract it from
kidney dialysis.”
Hep C transmission through sex is more controversial; studies show transmission
is rare in heterosexual couples where one partner is HCV positive (under five
per cent). In the last few years several hundred HIV positive gay men have
been diagnosed with hep C through sex. This suggests, at the very least, HIV
positive people are much more vulnerable to hep C. This interests Dame Anita
who resolves to find out more and make it part of her campaigning.
Brain fog
It’s sad and ironic that the woman who did most to persuade my generation
to detox ethically and naturally is now struggling to rid her own body of
damaging toxins.
Her symptoms, she says, are few: itching, loss of appetite, some fatigue and
occasional ‘brain fog’ that she previously put down to ageing.
She is 64 but looks at least 10 years younger. With her hair tied neatly back
and dressed in black she seems smaller, more petite, than in her 1980s publicity
shots. Thankfully, she is free of more debilitating symptoms like nose bleeds
and liver or abdominal pain. But as the experts point out, an absence of serious
symptoms doesn’t necessarily mean absence of liver damage.
Bubbles
“I can’t drink anymore which is a shame because we moved to this
house to have a vineyard. But I’ve never been much of a drinker,”
she says thrusting a bottle of Chateau Highgate pinot noir in my hand.
“I have dealt with high blood pressure for 35 years and was living with
hep C most of that time yet I still managed to set up the Body Shop and go
on marches. It didn’t seem to slow me down.
“I know it sounds like I don’t take it seriously. The effects
are cumulative. Some people are debilitated by it.”
It’s obvious she has full confidence in her doctors and is happy to
be guided by them about the need for a transplant.
“Who knows if I will be here in 15 or 20 years? I live my life in three
month bubbles between appointments. I have genotype 1, the most virulent.
I have cirrhosis but no tumours; these are two different things.
“My doctors tell me there is no point in having treatment now. It will
do more harm than good so it’s a transplant or nothing. Did you know
you can have a new liver and still have the virus in your body?”
Unsentimental
Has she experienced age discrimination about having a transplant?
“No. I don’t think my age is an issue or my hepatitis - nor should
it be for me or anyone else.”
But she is worried there may not be enough livers for all who need them.
“People should be made to opt out rather than opt into donor schemes.
I don’t understand people’s sentimentality for body parts and
organs. Once you’re dead, you’re dead.”
I expected her to rattle off a long list of complementary therapies she is
using and I am taken aback when she says “nothing but milk thistle”.
“It seems to be the one the doctors are most happy about us taking.
I did see this Chinese herbalist in San Francisco for a while but it was a
pain in the neck, just plain impractical, trying to get the herbs and liquids
through customs.
“Since my diagnosis I have had to become more body aware, but I have
to push myself to make time for self care like massages. I have always been
more interested in aerobics for the brain than for the body. For me knowledge
means control of your body; it can give you such power.”
No slow down
Dame Anita insists she has hardly changed her life or slowed her frantic globe
trotting in support of causes too many to mention. But she confesses to being
more tired these days: “I am the only person I know who falls asleep
during MRI scans.”
Since controversially selling the Body Shop to L’Oreal in July 2006,
Anita, a grandmother, has massively scaled back her commercial activity. She
and her husband netted an estimated £130 million from the sale, much
of which has been ploughed into her Foundation which supports her favoured
ethical and political causes. “It was a gift for us to do the things
we wanted to do.” Never forget, this is the woman who famously told
her kids they won’t inherit anything.
Apart from shouting from the rooftops about hep C, she has recently engaged
a powerful PR agency to try to secure release of the ‘Angola Three’
- Black Panther prisoners left to rot in solitary confinement in a US prison
for 35 years for a crime she says they could not have committed.
“The prison system there is very different from here. They lock you
up and throw away the key. There is no attempt at rehabilitation. They just
hope you die in jail. I was amazed to learn that 80 per cent of prisoners
in the US have hepatitis C.”
Castro Street and HIV
Her support for HIV charities has prepared her well for the battles ahead.
She got involved back in the 1980s when she opened a branch of the Body Shop
in Castro Street, San Francisco’s legendary gay quarter.
“The gay community there disliked ubiquitous brands but they welcomed
us. The fabulous Sisters of Perpetual Indulgence blessed the shop and we ran
it as community shop. People would just drop in. On the wall we had a poster
that said: ‘2-4-6-8, Use a Condom or Masturbate’.”
Back in the UK, they invested in Body & Soul, the London-based charity
for children and families affected by HIV. They have bought B&S new premises
and have helped organise their recent sell-out fundraising Scissor Sisters
concert.
Anita Roddick has a big heart, a sharp brain and boundless enthusiasm. A brief
glimpse at her foundation website gives you a sense of her huge capacity for
any fight she feels is just. People with hep C should be relieved that someone
of such passion now has hep C in her sights.
HIV and hep C - the facts
While disease progression in those infected with hep C alone is generally
slow, allowing patients time to consider their treatment options, it is much
more serious for those infected with HIV as well. Studies show having HIV
and hep C will lead to much quicker progression to liver cirrhosis or liver
cancer. Having hep C can mean HIV treatment may not be as effective as it
should. The damage it does to the liver can also mean there is a greater risk
of side effects from HIV drugs.
Chances of success on the treatment are significantly lower than those with
hep C alone so it is wise to start treatment as soon as possible after diagnosis.
Untreated cases will continue to pose a risk of infecting others through sexual
contact.
You may be at risk of if you:
• share equipment for injecting drugs
• have medical or dental treatment in countries with inadequate infection
control
• have unprotected sex with someone who has hep C
• have a piercing, tattoo or acupuncture with non sterile equipment
• had a blood transfusion before 1991
Famous people living with hep C
Writer Alan Ginsberg - died of liver cancer
Pamela Anderson - infected from tattoo
Beach Boy David Marks - part of the UK FaCeit campaign
Stuntman Evel Knievel - liver transplant
Author Ken Kesey - died of liver cancer
Actor Larry Hagman (JR Ewing) - liver transplant.
Useful sites
• Hepatitis C Trust helpline: 0870 2001 200 • www.hepctrust.org
• Hepatitis C Information Line: 0800 451 451
• www.anitaroddick.com
