26 LISTENER JUNE 1 2019
tape. One of the display fixtures was a cake
stand that cost a couple of dollars. The pens
they gave away were presented in a cutlery
drainer from someone’s flat.
“We were the little people,” says Heal.
“There were mega-thousands-of-dollars
stands. Big, big companies. And people were
coming up to us and saying, ‘This is the best
concept here.’”
That concept is centred on
a striking rainbow-coloured
butterfly logo that was
originally commissioned
by Freeman from Native
American artist Marty Two
Bulls Sr to symbolise the
battle against hep C. With
Freeman’s help, the New
Zealanders had the design
made up into high-quality
enamelled pins and other
ephemera. In an environ-
ment of sleek corporate
colour schemes, the butterfly
seemed to speak of some-
thing different – something
hopeful and human.
Hep C is a disease entan-
gled with human folly.
Although some people
contract the virus through
medical misadventure or
bad tattoo practice, and the
number of gay men infected
through sexual contact is
growing, overwhelmingly
the people in New Zealand with the virus
were infected through injecting drug use,
perhaps decades ago.
That brings with it a powerful stigma. His-torically, hep C sufferers have experienced
that stigma not only from people around
them, but also from medical professionals.
Most people keep it quiet. As many as half
the people with the virus in New Zealand
still don’t know they have it.
“At a GP conference last year, a doctor
told me she thought I was really brave,” says
Heal. “She’d got it in a workplace accident,
treated herself with interferon, never told
anyone – not her family, not her colleagues
- and kept working. And I thought, what
does she think of people with hep C, then,
if she can’t tell anybody?
“We’ve got a long way to go with atti-
tudes. And that’s where this butterfly helps,
because it just seems to cut through that, it
really does start conversations in a positive
way.”
ELIMINATION CHALLENGE
New Zealand has some advantages over Aus-
tralia in the elimination challenge. Australia
got a head start with fully funded treatment,
but Maviret is a pan-genotypic cure: it works
for everyone. We also have the advantage of
political stability. Freeman says one reason
for Australia’s loss of political focus on
the hep C strategy was the
revolving door in the Min-
ister of Health’s office: the
country has had five health
ministers in seven years.
“You then replace that
minister with a new minister,
who doesn’t know anything
about the portfolio, and has
the usual one-year learning
curve to work out what’s
going on, and we’ve never
recovered from that.”
The Australian Govern-
ment was prepared to lock
in a billion-dollar commit-
ment to fund the lifesaving
drugs, but only recently gave
the Hepatitis Foundation of
Australia $3 million for an
advertising campaign.
“The deal we got in Aus-
tralia was, we will spend
$200 million a year every
year for five years,” Freeman
says. “So, write a cheque to
the drug company – ‘Righto,
there’s $200 million.’ And it
was based on nothing more than that. So, if
we treated one patient, it would cost us $200
million. If we treated a million patients, it
would have cost $200 a dose.
“The first year we treated roughly 40,000,
and it cost us roughly US$5000 per treat-
ment. The next year we treated only half as
many. It cost us twice as much per head to
treat them. So, if you think about that, the
impetus for an advertising campaign that
says, ‘Hey, get tested, get treated’, is huge.
Because you’re not talking about a few mil-
lion dollars at stake, you’re talking about
$100 million. And was one million dollars
spent? Nah.”
Where New Zealand is way behind Aus-
tralia, says Ed Gane, is in diagnosis.
“Most people living with hepatitis C in
Australia have been diagnosed, he says. “Not
everyone, but well over 90%. But in New
Zealand, we think 40-50% of people living
with hepatitis C are still undiagnosed. So, no
matter how good the medicines are, you’renot going to cure every one if they don’t
know they have hep C.
“We need to get out there and get people
tested. There’s a lot of thought going into
the best way to actually get people tested.
One way is to raise awareness about risk
factors. That includes ever having used
[injected] recreational drugs in the past –
even just once.”
Diagnosis and the availability of a cure
are two of the three conditions for elimina-
tion, says Gane. The third is connection to
treatment, which is where Australia hasn’t
done so well. Although it is a reportable
disease in Australia and there is a central
registry of hep C diagnoses, the system lacks
a mechanism to tell all those people living
with the virus that there is now a miracle
cure available.EFFECTIVE CAMPAIGNS
Gane is a member of the committee formed
by the Ministry of Health to make recom-
mendations for a national hepatitis C action
plan and Heal and Stace were asked to fill
positions reserved for advocates. The com-
mittee is due to report in June.
“What I really want is for them to listen
and use the butterfly symbol in a national
awareness campaign,” says Heal. “I want
that in all countries, not just here. We’ve got
good ideas for effective campaigns. We defi-
nitely need celebrities and public figures. We
don’t think they need to have hep C – we’re
looking for people to say that they haven’t
had it, but they’ve had a test. I think that
would be an effective campaign.”
They have one celebrity figure already:
at the New Zealand premiere of The Chills:
The Triumph and Tragedy of Martin Phillipps
in Dunedin, Phillipps and members of the
production team wore butterfly pins and the
butterfly logo was prominently displayed
at the venue.
A few others have stepped into the light- Judd and Faithfull have both campaigned
for hep C awareness – but most have said
nothing.
HEPATITIS C CURE
“We’ve got a long way to
go with attitudes. And
that’s where this butterfly
helps, because it reallydoes start conversations
in a positive way.”From top, campaigners
Rachel Stace and Claire
Newman.