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Why are we not making progress
on stigma and discrimination?
By Dee Lee, WHA board member for the WPRO region
“We need more
people to come
forward to share
their stories and to
educate others on
hepatitis.”
out have a high profile, which helps to
spread the message widely, but many more
are people who want to share their own
experiences of living with mental ill health.
Stigma and discrimination are some of
the biggest issues facing people living
with viral hepatitis. Despite the massive
developments we are making globally
to eliminate the disease, we are making
very little progress in reducing stigma and
discrimination. We need more people with hepatitis to
come forward to share their stories and to
educate others on hepatitis. It’s not an easy
thing to do, but it is important. Recently
WHO Goodwill Ambassador for Hepatitis in
South-East Asia Region, Amitabh Bachchan,
shared his experience of living with
hepatitis B at the launch of India’s National
Action Plan on Viral Hepatitis. His profile in
the region will encourage others to come
forward to tell their stories which will
reduce stigma, meaning more people will
come forward for testing.
The hepatitis field needs to take inspiration
from how the stigma around mental health
has been addressed. People speaking out
about mental health have been a significant
catalyst for the reduction in the stigma
surrounding it. Some of those speaking The impact of the stigma around hepatitis
cannot be over-exaggerated; in China
we see people living with hepatitis being
driven to suicide as their whole life
becomes engulfed in discrimination. It’s
not uncommon in China to have special
12 hep Voice MARCH 2019
‘hepatitis tables’ in workplaces where
people living with hepatitis have to sit,
excluded from others. It’s this isolation that
causes serious long-term effects.
In 2017 WHA found that 93% of civil
society organisations reported stigma and
discrimination being issues in their country,
and whilst many hepatitis elimination
strategies mention addressing stigma and
discrimination as a goal, few have the
associated work needed to address the
issue.
Civil society has an important role to play to
ensure that awareness raising and education
is at the centre of the discussion. There is
still so much misinformation about hepatitis
feeding the stigma and discrimination. By
educating the public and raising awareness
we will be able to ensure that people
understand viral hepatitis, and that stigma is
reduced. The rights of hepatitis patients are
basic human rights and we need to ensure
that they are upheld.
“The rights of hepatitis
patients are basic
human rights”
hep Voice
MARCH 2019 13