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hep Voice
JANUARY/FEBRUARY 2021: VOL 49
Your magazine from the World Hepatitis Alliance
Find the Missing Millions: inspiration from Israel
Hazel Heal: "We hope eliminating hepatitis
in Niue will have a ripple effect throughout
the Western Pacific region and beyond."
The fight against viral hepatitis: call for stories
hep Voice JANUARY/FEBRUARY 2021 1
Welcome to hepVoice Contents Stay connected
It is still early in 2021, but the hepatitis community has www.worldhepatitisalliance.org
hit the year running. January saw exciting developments Regulars
that will hopefully accelerate hepatitis elimination contact@worldhepatitisalliance.org
efforts. Firstly the World Health Organization (WHO) 6 hepHeadlines
Executive Board agreed to develop an updated Global www.facebook.com/worldhepalliance
Health Sector Strategy on Viral Hepatitis, to be released 8 Dates for the diary
next year. WHO also released the new global report on @Hep_Alliance
access to hepatitis C diagnostics and treatment. The
report shows the progress being made towards ensuring Features @worldhepatitisalliance
hepatitis C treatment is more affordable in low-and
middle-income countries. 4 A message from
WHA President
We also saw viral hepatitis discussed at the World
Economic Forum’s digital Davos 2021 event in January. 10 2020: our impact Want to contribute?
It was encouraging to see viral hepatitis and its
elimination being part of this important 16 Eliminating hepatitis in Niue We welcome your contributions so
Don’t high-level forum.
miss out please get in touch at
- receive 19 FIND out more about contact@worldhepatitisalliance.org
World Cancer Day was on 4 February, 2021. In this issue
hepVoice hepatitis B diagnostics to have your news and stories
of hepVoice, we want to highlight the impact of liver
straight cancer, the third most deadly cancer. The most common included in future issues and feel free
to your 20 The fight against viral to share this magazine with
cause of liver cancer is viral hepatitis. This month Dr
inbox! hepatitis: call for stories your network.
Naranjargal Dashdorj, co-founder and chief executive
officer of the Onom Foundation in Mongolia shares
her experience of tackling hepatitis in the country with
22 hepinion Hepatitis
the highest rates of liver cancer in the world. We also
elimination is
highlight the story of Adrian, who lost his life due to liver cancer prevention
cancer caused by hepatitis.
24 WHO to update Global
In this issue, we also speak to Hazel Heal of Global Health Sector Strategy
Health New Zealand, who is working to make the pacific on Viral Hepatitis
island nation of Niue the first WHO member state to
eliminate viral hepatitis. 24 WHA re-elects executive
board memebers
I hope you enjoy this edition.
26 Find the Missing Millions:
inspiration from Israel
28 Wall of Stories:
Cary James, WHA Chief Executive Adrian's gift
2 hep Voice JANUARY/FEBRUARY 2021 hep Voice JANUARY/FEBRUARY 2021 3
A message from WHA
President, Dr Su Wang
As we enter face of the COVID-19 pandemic. The
2021, we are strength of WHA is in our members.
now in the I know many of you face uncertain
‘decade of times, and we will be advocating at
elimination’. the highest levels for more support.
Over the next nine years, countries
need to accelerate efforts to eliminate The World Hepatitis Alliance (WHA)
viral hepatitis by 2030. Yet, we know and our members will be at the
that most countries are not on track forefront of the global advocacy
to reach the 2030 goals set out movement, exploring every opportunity
by the World Health Organization. to increase support for hepatitis
The COVID-19 pandemic has also programmes and raise awareness of
hampered progress. In 2021, it is clear viral hepatitis. Our organisation enters
that a concerted effort is needed to the new year with added strength in
raise the voices of the communities our new president-elect, Danjuma
affected by viral hepatitis to join the Adda from Nigeria, who will work
fight against hepatitis alongside me this year,
to support low-and "The strength of before taking over as
president in 2022.
middle-income countries
to eliminate hepatitis. WHA is in
We will be looking to WHA will be busy
raise the voices of the
our members." this year. We will be
communities and people affected by continuing to call on
viral hepatitis, highlighting the human global funders for your organisations.
impact of hepatitis. There will also be Throughout my time with WHA, I have
a new capacity-building programme been inspired by the determination and
launched during this year, which aims resilience of our members.
to work with members to support their
Our collective strength and voices
advocacy work. In July, we will be
combined are an unstoppable force,
raising awareness on World Hepatitis
and I look forward to working with you
Day and we will be launching a new
this year to make the elimination of
theme for the day soon.
hepatitis a reality.
There is much work to be done and the
Wishing you a Happy New Year,
and to advocate for more support for
Su Wang, MD MPH
hepatitis programmes, especially in the
4 hep Voice JANUARY/FEBRUARY 2021 hep Voice JANUARY/FEBRUARY 2021 5
hep headlines
WHO global progress 3. Accelerating quality Plan to eliminate
report on hepatitis assurance hepatitis C in
C diagnostics and product Northern Ireland
and treatment registration/approval.
4. Obtaining continued
price reductions and
Hepatitis is regularly making the news. Here are a few addressing patent-
highlights from around the world. related barriers
5. Engaging with civil
New AASLD president hepatitis C virology Although it is estimated society and leaving no Following a positive
The World Health
kicks off a year of and pathogenesis. that over three million one behind. health economic
Organization (WHO)
enhanced engagement children and adolescents assessment, the
During his term, the published its third global 6. Leveraging financing
worldwide live with Department of Health
AASLD will focus on report on access to and
hepatitis C, the global of Northern Ireland and
refining and enhancing hepatitis C treatment, procurement options.
response to the virus the Public Health Agency
how it achieves its with this year's edition
has so far focused on have published a new
mission of advancing including information on Read more here.
adults. A recent study action plan to eliminate
and disseminating the access to diagnostics as
by Malik et al. looked at hepatitis C in Northern
science and practice well. The report focuses WHO announces
the national hepatitis C Ireland by 2025.
of hepatology, and on 12 countries with high development of new
policies in place in 122
Dr. Raymond T. Chung, promoting liver health hepatitis C burden that guidance on Hepatitis
of the 194 WHO Member The plan aims to tackle
MD, Fellow of the and quality patient have implemented C self-testing
States, and found that hepatitis C through
American Association care. It will also focus successful public
more than half of them On 22–23 February, coordinated action
for the Study of Liver on increasing member health approaches.
(58%) contained no the WHO is holding across a large number
Diseases (FAASLD), engagement, bolstering policy recommendations of individuals, groups
Building on the success a meeting of the
director of Hepatology programming, and for either the testing or of the observed Guidelines Development and organisations. These
and the Liver Center, forging partnerships. treatment of children countries, the report Group (GDG), to develop will build on existing
and vice chief of or adolescents. activities aimed at
Read more here. isolates key steps new guidance on
Gastroenterology (both preventing and detecting
towards achieving hepatitis C self-testing.
at Massachusetts The authors conclude new cases of hepatitis C.
Where are the children universal access
General Hospital in that updated guidance The purpose of the
in national hepatitis to hepatitis C virus
Boston), embarked on on the testing and meeting is to review the Read more here.
C policies? diagnostics
his year-long AASLD treatment of younger evidence, then provide
and treatment:
presidency. Dr. Chung, age groups is needed, recommendations and
succeeds former particularly in countries 1. Adopting a public guidance on hepatitis
President Jorge A. with high hepatitis C health approach that C self-testing. The
Bezerra, MD, FAASD, burden in children. is focused on universal guidelines should be
who is an internationally health coverage. published in 2021.
recognised researcher in Read more here.
the areas of 2. Simplifying hepatitis C Read more here.
testing and delivery.
6 hep Voice JANUARY/FEBRUARY 2021 hep Voice JANUARY/FEBRUARY 2021 7
Participating in a hepatitis related activity or have an event planned?
Email us on contact@worldhepatitisalliance.org or contact us on social media.
Dates for the Diary 22 March
World Water Day
Upcoming events and activities taking place in the Sustainable Development Goal 6 is crystal clear: clean, safe water for all by
coming months. 2030. But today, billions of people are still living without safe water – their
households, schools, workplaces, farms and factories struggling to survive
and thrive. A lack of access to safe water and sanitation facilities fuels the
spread of hepatitis A and E, often amongst some of the most
20 February marginalised communities.
World Day of Social Justice
World Day of Social Justice aims to promote social justice by tackling issues 24 March
such as poverty, discrimination, gender inequality and unemployment. World TB Day
Eliminating viral hepatitis should be recognised as a social justice priority. World TB Day is designed to build public awareness that tuberculosis (TB) still
Viral hepatitis impacts some of the world’s most marginalised and remains an epidemic in much of the world. Together, TB and viral hepatitis kill
disadvantaged communities the hardest. These include Indigenous peoples, almost three million people each year. By better integrating our efforts and
refugees, people in prison, and people who inject or use drugs. tackling the epidemics of TB and viral hepatitis together, we will achieve a
more efficient, sustainable, and impactful response to both diseases, as well
as substantial gains for public health and the health of communities affected
28 February by the diseases.
Rare Disease Day
Rare diseases are not as rare as we think – one in 20 people are living with 7 April
one. Each year on 28 February, the rare disease community comes together World Health Day
to raise awareness amongst both the general public and decision-makers,
highlighting rare diseases and their impact on patients' lives. World Health Day 2021 will be celebrated with the theme "protecting health
from climate change," putting health at the centre of the global dialogue
about climate change.
1 March
Zero Discrimination Day
Zero Discrimination Day aims to promote equality before both the law and in
practice throughout all of the member countries of the United Nations. With
stigma and discrimination identified as leading barriers to diagnosis for viral
hepatitis, this day provides an important platform to address these issues and
to call for an end to discrimination.
8 hep Voice JANUARY/FEBRUARY 2021 hep Voice JANUARY/FEBRUARY 2021 9
2020: our
impact
“The dynamic of WHA
2020 was a year marked by the regional members
COVID-19 pandemic. Across the is reinforcing.”
world, the pandemic and associated
lockdowns had a significant impact
82%
on the communities affected by viral
hepatitis and the services they need
to access. Despite the challenges, World Hepatitis Day 2020 saw the hepatitis community unite to raise our voices and
the hepatitis community still made to remind the world that hepatitis is a global problem. The first-ever World Hepatitis
considerable progress throughout the of members believe membership Day virtual video relay passed through 37 countries, marking the start of World
year. Here are just a few of the many to WHA benefits Hepatitis Day and reaching from New Zealand all the way to Hawai’i. The official
highlights from a year none of us their organisation #WorldHepatitisDay hashtag accumulated more than half a billion impressions on
will forget. Twitter alone! Read the report here.
96%
Over 80% of respondents to our 2020
member’s survey found membership to
WHA valuable. Here is what they had
to say:
of members feel part of a global
movement to eliminate hepatitis
"WHA gives my
EURO
organisation recognition.”
SEARO
“The virtual
relay was genius.
The adaptable
resources for
The COVID-19 pandemic quickly meant that the World Hepatitis Alliance
(WHA) had to adapt plans and provide extra resources for people living with
local use
viral hepatitis. WHA developed a COVID-19 information hub, which was AFRO are brilliant.” WPRO
updated with the latest information as the pandemic developed. We hosted a
webinar with leading medical professionals answering questions from people -WHA Member
living with viral hepatitis and held a global virtual ‘town hall’ to share the
experiences of people across the globe. We also surveyed the community to
determine the impact of COVID-19 and wrote up the findings in the Lancet.
Visit the hub by clicking here or visiting www.worldhepatitisalliance.org/
COVID-19 PAHO EMRO
10 hep Voice JANUARY/FEBRUARY 2021 hep Voice JANUARY/FEBRUARY 2021 11
2020: our
impact
New investment
cases produced
WHA’s investment cases for hepatitis C
in India, Pubjab state and Cambodia
once again highlighted that hepatitis
C elimination is cost-effective. The
importance of these has never been
more critical as we advocate for
increased funding for hepatitis amongst
the economic uncertainty caused by the
COVID-19 pandemic.
members supported through
5 NOhep Medical
in-country programmes Visionaries meetings
Five WHA members were
supported through the Find
the Missing Millions in-country NOhep Medical Visionaries met for the first time in the Asia Pacific region
programme in Armenia,
Bangladesh, Ghana, Indonesia at APASL, in February 2020, when 13 Medical Visionaries attended a forum
and Jamaica. In the face of the to discuss accelerating hepatitis elimination efforts in the region. 25 NOhep
COVID-19 pandemic members Visionaries also met virtually at AASLD’s The Liver Meeting Digital Experience.
continued to adapt and deliver
their advocacy strategies and
address the barriers to hepatitis
testing throughout 2020.
hepVoice will report on these
programmes in 2021.
12 hep Voice JANUARY/FEBRUARY 2021 hep Voice JANUARY/FEBRUARY 2021 13
2020: our
impact
Virtual meetings became the new
WHA webinars normal and WHA led the way by
hosting eight webinars across the year
were watched by over on subjects including the COVID-19
pandemic, working with policy
makers, the prevention of mother-to-
4,000 people child transmission and much more.
Catch up on these webinars on our
YouTube channel here.
Hawaii Health and Harm Reduction Center and Hep Free Hawaii
Nine new case studies
were added to our Find
the Missing Millions
Advocacy resource. These
case studies highlighted
successful community led
strategies and programmes
from around the world
that look to overcome the
barriers to diagnosis and
Saint-Petersburg Charitable testing for viral hepatitis.
Fund “Humanitarian Action”
14 hep Voice JANUARY/FEBRUARY 2021 hep Voice JANUARY/FEBRUARY 2021 15
Eliminating hepatitis in Niue
groceries. We hope this will provide
an incentive for the whole adult
population to come forward
for testing.
After her own experience of living elimination was on a short time scale,
with and being cured of hepatitis as well as the opportunity to be part In addition, we are conducting a
C, Hazel Heal is now on a mission of a global first. survey of people's knowledge and
to make the small Pacific island attitude towards viral hepatitis,
nation of Niue the first to eliminate How are you going to do it? together with Otago University in New
viral hepatitis. Through the Edmund We are working to support Dr Eddie Zealand. We plan to ask people to fill
Hillary Fellowship, she founded and his staff in Niue and we are very in the survey while they wait for their
Global Health New Zealand and grateful he and the government have rapid test results. The survey results
supported the plan. On such a small could prove valuable for further
Hep C Action Aotearoa. She is
island, he is really the only doctor elimination efforts in the region. We
working with the health system
there. Our experienced project team have secured ethics approval for this
in Niue to roll out a testing and research component of the plan.
treatment programme for the doctors are available to consult with
for any questions he may have. His
population of Niue, utilising How many people do you expect to
hospital has regular clinics testing for
philanthropic donations. be living with viral hepatitis?
blood sugar etc., and we are
leveraging this infrastructure to test Extrapolating from available regional
Why did you choose Niue for the for hepatitis with rapid tests. Are you looking to expand the
data, we expect around 6% of
elimination project? elimination programme in
islanders to be living with hepatitis B
The idea to try and eliminate viral "With this approach and 1.5% with hepatitis C. We cannot the future?
hepatitis in Niue came to one of our predict what the exact number is, as There are a lot of people with Niue
Hep C Action Aotearoa founders, it would take six to there has never really been a study on heritage living in Australia and New
Anake Goodall when they were
visiting the island. With a small
12 weeks to test and Niue, but we are committed to
eliminating viral hepatitis in Niue
Zealand, and we are optimistic that
this project will raise awareness
population of 1200 adults, and 1600 diagnose the regardless of what the prevalence of within those communities and
people in total, elimination seemed hepatitis may be. encourage them to get tested and
easily achievable. entire population." treated. We also hope eliminating
Those who are positive will get How long will it take to eliminate hepatitis in Niue will have a ripple
Excited by the prospect of ridding
treated and linked to care. People viral hepatitis in Niue? effect throughout the Western Pacific
this island nation of a deadly virus,
living with hepatitis C will receive a We cannot say for sure, but since Niue region and beyond. Niue has the real
we quickly reached out to local
full course of antivirals, while we will is a single island it should be fairly possibility of being the first WHO
authorities, as well as funders, to
ensure people living with hepatitis B rapid, although there are rural member state to reach the World
see if there was interest. Donors and
receive up to an 18 months’ supply populations that we must reach. We Health Organizations 2030
the government of Niue were equally
of medication, while we secure a expect to test 100-200 people a day elimination goals, laying down a
enthusiastic about the project and we
sustainable supply. The testing, for one or two days a week. With this marker for other countries.
secured the funding for elimination
in no time. Donors were particularly medication and linkage to care will all approach it would take six to 12
In the future we are looking to roll out
attracted to how achievable be free and people who come forward weeks to test and diagnose the
elimination projects on other
for testing will get a small voucher for entire population.
16 hep Voice JANUARY/FEBRUARY 2021 hep Voice JANUARY/FEBRUARY 2021 17
Island of Niue Niue on the world map
Pacific Islands like the Cook Islands influencers to launch a big media
and Tuvalu. These islands have larger
populations spread across multiple
campaign in Niue. However, under the
recommendations of the local doctor FIND out more about
hepatitis B diagnostics
island clusters, and they present a and because of the small population
reater challenge than the single- size, we were able to reach the
island nation of Niue. We are hoping islanders through the local healthcare
that our experience in Niue, combined providers without the media effort.
with our previous experience with
As we look to expand the project Catch up on the World This is the third
awareness campaigns in New in the series of
Zealand, will help us with launching on other islands, we will use what Hepatitis Alliance (WHA) and webinars from
projects in these larger nations. we have learnt from Niue and New the Foundation for Innovative WHA and FIND. Catch up on the
Zealand to engage the community,
New Diagnostics (FIND) previous two webinars at the
How are you engaging the utilising the Hep C Butterfly developed links below.
by Hep C Action Aotearoa to get the webinar "Diagnostics for
population to communicate about
the service that is now public’s attention. We will also be hepatitis B: what we have." Diagnostics for hepatitis C: what
becoming available? translating materials so that they are we have
accessible by the community. In this webinar we were joined by
Each country presents its own unique Sonjelle Shilton, Deputy Head of HCV Strategies to increase access and
cultural, geographical and social Read more about the project Access at FIND to talk through the linkage to care for hepatitis C
challenges. It is very important for us diagnostics available for hepatitis B
to approach any country in which we Hep C Action Aotearoa website and explore the diagnostics in the new
operate with utmost cultural respect. World Health Organization guidelines
With this in mind, we originally FixHepC Hepatitis on the prevention of mother-to-child Click here to view the webinar
planned to work with local medication access transmission of hepatitis B.
authorities, healthcare providers and
18 hep Voice JANUARY/FEBRUARY 2021 hep Voice JANUARY/FEBRUARY 2021 19worldwide is made clear and tangible individuals, as well as the
to them. organisations that help the largest
number of submissions. Prizes for
Anyone can submit and we individuals include Kindles, Bluetooth
particularly encourage headphones and gift cards.
submissions from:
Finalists from three countries will be
• People living with and affected by invited to attend domestic workshops
hepatitis (including but not limited around World Hepatitis Day
to people living with hepatitis, (28 July, 2021).
people cured of hepatitis C, families
affected, etc.) Finalists will also be invited to an
international digital hackathon in late
• Advocates 2021, to drive forward hepatitis
policy changes.
• Civil society leaders
The fight against viral hepatitis: • People in hepatitis organisations DEADLINE FOR SUBMISSIONS
call for stories PRIZES
The deadline for submissions is March
7th 2021. Submit your story.
Awards will be presented to
exceptional submissions from
Has viral hepatitis impacted your calling on individuals and
life, the life of someone you care organisations to submit their stories
about or your community? Are you to help inspire change nationally
willing to share your story to help and globally.
inspire change?
These stories could take the form of
The World Hepatitis Alliance, text, audio, visual art, or infographics.
All submissions will be reviewed by
NOhep and the London School of
independent judges and exceptional
Hygiene and Tropical Medicine are submissions will be recognised
collecting stories about hepatitis at national and global events, in
and we need your help! addition to receiving prizes.
WHAT CAN BE SUBMITTED? ARE YOU WILLING TO SHARE YOUR
The real stories of how hepatitis STORY TO HELP INSPIRE CHANGE?
affects individuals, families and These stories will be used to influence
communities are a powerful reminder decision makers at the highest levels,
to decision makers about the need for by ensuring that the impact hepatitis
action on viral hepatitis. We are is having on people and communities
20 hep Voice JANUARY/FEBRUARY 2021 hep Voice JANUARY/FEBRUARY 2021 21e p i n i o n
h Hepatitis elimination is cancer prevention
by Naranjargal Dashdorj, MD, PhD epidemic in the country, which was the manifesto promise, and worked More
caused in part by the use of unsterile with the government to implement a countries
World Cancer Day is celebrated on medical syringes in the 1970s and hepatitis elimination strategy using must
4 February each year. Naranjargal 1980s. The government knew that domestic financing. Since then, we integrate
Dashdorj, co-founder and chief there was a problem with hepatitis have screened nearly two million hepatitis elimination into their cancer
executive officer of the Onom in Mongolia and started universal people for hepatitis and over 50,000 strategies. We believe that hepatitis
Foundation, tells us about how hepatitis B vaccination in 1991. people have been cured of hepatitis testing, treatment, and prevention
hepatitis elimination is playing a Despite the vaccination efforts there C. However, Mongolia is still leading are as effective and important as
vital role in reducing cancer deaths were still 400 thousand people living the world with liver cancer mortality encouraging healthy lifestyle, anti-
in Mongolia and why it is time for the with chronic viral hepatitis B, C, and per 100,000 population. Hepatitis smoking and obesity strategies in
world to take up the fight. D (Delta) in a country of three million C induced liver cirrhosis and liver preventing cancer deaths. Therefore,
people. With so many being affected cancer is on the down slope, owing we also initiated programs such as
Viral hepatitis is one of the leading by hepatitis and liver cancer, it was to the effective direct-acting antiviral Smoke Free Mongolia and Better
causes of liver cancer, one of the top crucial that policy makers saw the (DAA) treatment and its better Hearts, to raise awareness of an
five most deadly cancers, yet most prevention, diagnosis and treatment availability in Mongolia. Sadly, there overall healthy lifestyle.
countries do not mention hepatitis of viral hepatitis as a priority. My is not much improvement in the
within cancer strategies. There is no organisation, the Onom Foundation, Advocates have an important role to
hepatitis B story. Specifically, chronic
importance put on administering the led a call from the community to the play to ensure global, national and
hepatitis B and D co-infection is
hepatitis B vaccine, providing access to government to do more to treat people regional cancer strategies address
causing so much heartbreak. Chronic
hepatitis B treatment and the hepatitis living with hepatitis in Mongolia. hepatitis and reduce the burden of
hepatitis B and D co-infection is the
C curative treatments, or the known liver cancer.
most severe form of viral hepatitis
prevention measures including harm
reduction services and the prevention "Mongolia is now and has much higher risks, including
a nine-fold increase in the risk of We must raise our voices. As in
of mother-to-child transmission. This
is a missed opportunity to help prevent
on track to reach liver cancer compared to the hepatitis Mongolia, it will take tenacity,
B infection alone. This highlights determination, organisation and
thousands of cancer deaths worldwide. the World Health the urgent need to improve the care mobilisation to make change happen.
For the sake of all those needlessly
In my own country of Mongolia, we Organization’s target for hepatitis patients, not only in
suffering, now is the time for action.
know all too well the link between Mongolia but around the world.
hepatitis and liver cancer. Mongolia
of eliminating viral
In order to reach this important
suffers the world’s highest rate of liver hepatitis by 2030." goal, we still have so much to do
To learn more about the work of
the Onom Foundation in Mongolia
cancer, approximately 12 times the
to see a further drop in the liver please visit SmokeFree Mongolia
world average. Approximately 15% of We convinced all political parties to
cancer mortality and to reduce the
all deaths in Mongolia are due to liver commit to viral hepatitis elimination in and Healthy heart - Healthy
financial burden on the country’s
cancer and liver cirrhosis. The greatest their manifestos. After the election, we Mongolia. Read their full case
health system caused by liver cancer
contributing factor is the hepatitis advocated for the implementation of
treatments and transplants. study here.
22 hep Voice JANUARY/FEBRUARY 2021 hep Voice JANUARY/FEBRUARY 2021 23EURO Regional Board Member: Rachel becoming their CEO in 2018. Before
WHA re-elects executive Halford, United Kingdom
Chief Executive Officer, The
this, she was the CEO of
Women in Prison, a UK
board memebers Hepatitis C Trust NGO supporting women
affected by the criminal
The WHA has recently re-elected Region (SEARO), European Region Rachel has worked with justice system. In 2018,
Rengasamy Ponnusamy Shanmugam, (EURO) and Region of the Americas people at risk of viral she joined the WHA board
Rachel Halford and Patricia Velez- (PAHO). We look forward to continuing hepatitis for over 20 years as the European Regional
Moller for being re-elected to WHA's our joint fight against hepatitis – the homeless, prisoners, Board member. Diagnosed
Executive Board for South-East Asia in 2021. substance misusers and in 1998, after a year of
migrants. In 2015 she interferon treatment she
joined The Hepatitis C Trust cleared hepatitis C in 2007.
PAHO Regional Board Member: physician, teacher and patient to fight
Patricia Velez-Moller, Guatemala against lack of awareness and stigma
Founder, Guatemala surrounding hepatitis. She co-founded
Liver Association the Guatemalan Liver WHO to update Global Health
Association. She is currently
Patricia is a physician with
a master’s in public health
serving as
the Vice-President.
Sector Strategy on Viral Hepatitis
and postgraduate studies
in microbiology. She has At country level Patricia On 18-26 January 2021, the 148th Hepatitis. We will keep you informed
worked for over 30 years is working with the meeting of the Executive Board of the of every opportunity to input into its
at the faculty at Medical government on the World Health Organization (WHO) was development over the coming months.
School of Universidad de development of the held. The agenda included a proposal
san Carlos de Guatemala. first national hepatitis to develop an update to the 2016-2021 "WHA will be advising
guidelines. At international Global Health Sector Strategy on
Patricia is a hepatitis C survivor. Since level Patricia participated in the Viral Hepatitis. WHO during the
her diagnosis in 1995, she has used
her knowledge and experience as a
Hepatitis technical Advisor Committee
As a non-state actor to WHO, the creation of the new
of PAHO/WHO.
WHA submitted a statement to the
executive board. In it we welcomed the
Global Health Sector
SEARO Regional Board Member: He founded the Department of development of a new global health Strategy on
Rengasamy Ponnusamy Gastroenterology, Stanley sector strategy on viral hepatitis. We
Shanmugam, India Medical College in Chennai, also highlighted the need for civil Viral Hepatitis."
Founder, Chennai India. He had also society organisations and the affected WHO is aiming to present the updated
Liver Foundation performed the country’s community to be a central pillar in the strategy at the World Health Assembly
first liver transplant development and implementation of
Rengasamy has over 50 in May 2022.
in 1996. Rengasamy the new strategy. You can read the full
years experience in medical is working with the statement and see WHA president, Su The new strategy is an important step
practice and a passion for Government of India to Wang’s video statement here. on the road to elimination and will
serving the needy. He is push for elimination of viral become an important advocacy tool,
the first qualified surgical hepatitis by 2030. WHA will be advising WHO during reminding governments of the need for
gastroenterologist in his the creation of the new Global action on hepatitis.
country specialised in liver disease. Health Sector Strategy on Viral
24 hep Voice JANUARY/FEBRUARY 2021 hep Voice JANUARY/FEBRUARY 2021 25Inspiration from around the world
Top tips for success
Inspiration from A change will only take place once the healthcare system in Israeli prisons
is moved from the responsibility of the IPS, to a national
around the medical authority.
world - Israel Until such a structural change takes place, interim steps must be taken to
ensure that the MOH, as the central health body, supervises the current
healthcare system in prisons.
Through the Find the Missing The involvement of the medical community and civil society is critical for
Millions campaign, we are achieving success.
spotlighting inspiring work
from around the world. The IPS, in response to PHRI’s to new inmates upon arrival. Only
outreach, claimed that it was not after PHRI submitted to the Court its
This month, we hear from undertaking screening tests because reservations over the proposed plan,
Physicians for Human the MOH had not classified people did the state announce in June 2020
Rights Israel (PHRI) on in prison as an at-risk group. As that it plans to begin running tests to
a result, the general standard of detect carriers among new inmates
their campaign to ensure healthcare provided in prisons is as of August 2020. They also agreed
screening, diagnosis and basket of the national health much lower than that provided that from March 2021, they would
treatment for hepatitis C was insurance, making it available to to the general public through the expand the availability of testing to
whoever needed it. government funded public the entire prison body, although the
available in prisons.
healthcare system. onus will be placed on people
Back in 2016, PHRI appealed to the
THE CAMPAIGN MOH, requesting that it incorporate In 2018, following on from the THE RESULTS
The campaign by PHRI followed both the Israeli Prison Service (IPS) in aforementioned responses and data
individual complaints from people in the aforementioned initiative, as provided by the IPS, PHRI petitioned Following our petition at the supreme
prison and the announcement by the healthcare in prisons is administered the Supreme Court, demanding that court, the IPS has committed to
Israeli Ministry of Health (MOH) in by the IPS. However, the MOH the MOH and the IPS be compelled undertake screenings of new inmates
2016 that they had signed on to the explained that it has no authority to carry out screening tests among belonging to risk groups, with the aim
World Health Organization (WHO) over health policymaking in prisons. inmates. Following criticism by the of later expanding it to include the
initiative to eliminate hepatitis C by court, the state claimed that it would rest of the prison population.
2030. They also agreed to promote a establish a procedure for conducting
plan for carrying out testing among Key learnings screening tests amongst inmates, As of March 2021, it plans to
according to the principles set out by distribute information to prisoners,
groups that are at higher risk of The involvement of medical
the MOH in November 2019. Despite including putting up signs in clinics to
contracting the virus. Following on voices, who are often absent
these declarations, the testing policy inform prisoners of their right to
from this, in 2018 the MOH included from discussions about prison
instituted by the IPS was markedly be tested.
new and expensive hepatitis C healthcare, proved critical here.
medications in the health services different in a number of matters,
Read the full case study here.
including testing only being offered
26 hep Voice JANUARY/FEBRUARY 2021 hep Voice JANUARY/FEBRUARY 2021 27Wall of Stories: Adrian's gift
Together, our stories can Adrian and his family started work remote. "We heard what we wanted
on the first Answer to Cancer Race in to hear," she said. "Now we know more
change the way the world June 2003, racing against time. In six than we wish we had to know."
sees viral hepatitis. incredible weeks, they were ready. On
3 August, the day of the race, he fired On the first day of his second year in
Each month we share the story of the starter's pistol and the runners college, Adrian awoke feeling funny. In
someone whose life has been affected were off. Eight days later, Adrian Elkins retrospect, he realised that he had felt
by viral hepatitis. This month, we died at the age of 20-years-old. tired all summer. He had attributed
share the story of Adrian Elkins. After his symptoms to his busy schedule of
20-year-old Adrian died from liver working and training for a major relay.
cancer in August 2003, his siblings "On August 3, the day
established the Answer to Cancer
Foundation. One of the foundation's
of the race, he fired As he returned to his dorm room after
breakfast, he began experiencing a
goals is to educate the public about the starter's pistol and lot of pain and difficulty breathing.
hepatitis B screening and risk factors A friend drove him to the hospital
and about preventive measures for the runners were off. emergency room, and at first, battled his disease for ten months,
primary liver cancer. Eight days later, Adrian physicians thought Adrian was before he passed away.
having a gallbladder attack. Then, an
Running was Adrian Elkin's passion. As Elkins died at the age ultrasound test revealed that his liver Adrian's legacy is a gift to generations
the youngest of five children, Adrian was extremely enlarged. A liver biopsy of patients in their fight against
grew up running, trying to catch up of 20-years-old." was done. liver cancer. Thanks to the generous
with his older brothers and sisters. Although he appeared healthy, Adrian support of many, the Answer to
In high school, he discovered cross and his parents always knew he was Days later, the family learned that Cancer Race 2003 raised twenty-four
country running and continued to run living with hepatitis B due to a blood Adrian had HCC, or liver cancer. It thousand dollars for three charities
after he went to college. transfusion he received as a premature was devastating news. Still, there dedicated to liver cancer. Adrian's
infant in India. However, they never was hope. Adrian was an excellent final gift is the Answer to Cancer Race
During Adrian's second year at candidate for surgery to remove the that will help generations of patients
expected the disease to manifest
university, he was unexpectedly cancer, since it appeared to involve in their fight against liver cancer. He
itself as a type of liver cancer called
diagnosed with liver cancer due to only the right lobe of his liver. He turned his passion for running into a
hepatocellular carcinoma (HCC).
chronic hepatitis B. This became started his first round of chemotherapy legacy of caring that will endure.
"Doctors said he was at little risk of
his toughest race ever. Adrian while waiting for surgery.
problems because of the hepatitis B,"
courageously underwent months of
his mother said. Thank you to The Hepatitis B
surgery, chemotherapy, and related Sadly, the operation brought more bad
treatments to beat the cancer. During Foundation for allowing us
She now wishes that they had been news. The cancer wasn't confined to
the last two months of his life, he to share Adrian's story. Read
on the lookout for cancer, with regular the right lobe after all – the left lobe
devoted his time to organising a race other stories from their #justB
screening and specialised medical was affected too. Worse, the cancer
to raise awareness about liver cancer storytelling campaign here.
care. But the possibility seemed so had also spread to his lungs. Adrian
and hepatitis B.
See more stories and submit your own at:
28 hep Voice JANUARY/FEBRUARY 2021 hep Voice JANUARY/FEBRUARY 2021 29
www.worldhepatitisalliance.org/wall-storieshep Voice
www.worldhepatitisalliance.org
30 hep Voice JANUARY/FEBRUARY 2021You can also read
