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TACKLING HEPATITIS C:
Moving towards an integrated
policy approach
Supported by:
1© The Economist Intelligence Unit Limited 2014
Tackling hepatitis C: Moving towards an integrated policy approach
Contents
Executive summary 2
About this report 4
1. Effective disease surveillance: The road to a joined-up solution 5
	 Elements of effective HCV control 5
	 Patient and advocacy groups in the front seat 6
	 Governments under pressure to confront HCV 6
	 Case study: Towards an action plan in Romania 7
2. The prevention imperative 8
	 Identifying the gaps 8
	 HIV/HCV co-infection helps to channel campaigns 9
3. Reaching out to vulnerable populations 10
	 Case study: The benefits of peer education in Thailand 11
Conclusion 12
2 © The Economist Intelligence Unit Limited 2014
Tackling hepatitis C: Moving towards an integrated policy approach
Executive
summary
Over a year after the publication of The silent
pandemic: Tackling hepatitis C with policy
innovation, The Economist Intelligence Unit’s
previous report on the subject, the hepatitis C
virus (HCV) continues to pose a rising threat to
healthcare systems worldwide.
As many as 170m people, or 2.4% of the world’s
population, are infected with HCV, according to
the World Health Organisation (WHO), nearly
five times the number estimated to be living with
HIV.1
While mortality rates as a result of acute
hepatitis have remained relatively constant
over the past ten years, deaths from HCV
complications, such as cirrhosis of the liver, have
seen a much sharper upward trajectory.
Therearecountriesineachregion of the world that
suffer from high rates of infection: Georgia and
Romania in Europe, Brazil and Argentina in Latin
America, Mongolia, Indonesia and Taiwan in Asia,
Egypt and Sub-Saharan countries in Africa, and
the United States in North America. As a result, a
number of these countries have played a leading
role in multinational efforts to combat HCV.
In our earlier report we found that the lack of
sufficient knowledge and data about the disease
and its prevalence, poor public awareness,
the failure to follow through consistently with
treatment where testing is available, and high
rates of infection among marginal populations
had created significant barriers to tackling HCV.
In this update, we look at what progress has been
made and the barriers that remain.
The key findings include the following.
Epidemiological data remain scarce, but
awareness of the disease is growing. The
continued lack of data remains a problem,
with 2010 being the most recent year for which
comprehensive global data are available.
A number of governments as well as non-
governmental organisations (NGOs) in countries
ranging from Thailand to Brazil are accelerating
efforts to improve education (particularly of
high-risk groups), increase outreach programmes
and make testing for the virus more accessible.
Yet the number of those providing free testing
remains small, eliminating another potential
source of data about the spread of the disease.
In addition, the relatively recent emergence
of HCV means that many awareness campaigns
and multinational initiatives are still focused on
viral hepatitis more broadly, making it difficult
to assess the extent to which national health
authorities are addressing HCV separately from
other strains of viral hepatitis.
NGOs and patient groups are taking the
lead. Patients and advocacy organisations are
1
Bulletin of the World Health
Organisation, 2012; 90:540-
550; Guidance on prevention
of viral hepatitis B and C in
people who inject drugs,
World Health Organisation,
July 2012.
3© The Economist Intelligence Unit Limited 2014
Tackling hepatitis C: Moving towards an integrated policy approach
playing a key role in shaping the policy agenda
to tackle HCV. On a multinational level, groups
such as the World Hepatitis Alliance (WHA),
the European Liver Patients Association (ELPA)
and the Coalition to Eradicate Viral Hepatitis in
Asia Pacific (CEVHAP) have mobilised lawmakers
and officials from the WHO to commit to a more
integrated policy approach to help developing
countries cope with what is expected to be an
explosion of HCV cases over the next decade.
“It’s an odd dynamic, where people are becoming
more aware, but that hasn’t yet translated into
real concrete action,” says Stefan Wiktor, team
lead for the Global Hepatitis Programme at the
WHO. “The idea is to try to harness some of
this excitement and start moving it in a more
aligned direction.” As a result, many initiatives
during the past couple of years have focused on
establishing multiple official pathways for the
exchange of information and advice between
the WHO, technical advisers, patient groups
and national governments, including the WHO’s
Framework for Global Action in 2012.
A better knowledge of the disease underscores
the need for a co-ordinated response covering
a range of areas. Healthcare stakeholders are
becoming more aware of the way in which HCV
progresses and of the potential for curing a
significant percentage of those who are infected
if they are identified sufficiently early. As a result,
more rapid testing and earlier diagnosis have
become a priority for patient groups and health
officials, as well as an important component
of prevention. “What we see in general is that
detection rates are slowly increasing, largely
thanks to the activities of NGOs,” says Achim
Kautz, vice president of ELPA. Initiatives with the
greatest success rate so far tend to focus on HCV
in a holistic way, rather than on one individual
aspect.
Global variations in addressing HCV persist.
The ways in which governments deal with the
threat posed by HCV vary substantially, with only
a minority of countries—such as Egypt, which has
the worst-affected national population (nearly
one in five people have the virus)—taking a more
aggressive approach to testing, surveillance and
treatment. On a regional basis, countries in Africa
(with the exception of Egypt), eastern Europe
and Central Asia have begun to expand access
to testing and diagnosis of the disease only
relatively recently. By contrast, larger middle-
income countries in Latin America and South-
east Asia appear to be mobilising resources more
successfully.
4 © The Economist Intelligence Unit Limited 2014
Tackling hepatitis C: Moving towards an integrated policy approach
Tackling hepatitis C: Moving towards an integrated policy
approach is an Economist Intelligence Unit report,
commissioned and funded by Janssen, which investigates
national and multinational policy initiatives to combat the
hepatitis C virus (HCV). The findings of this report are based
on desk research and interviews with a range of healthcare
experts.
Our thanks are due to the following for their time and insight
(listed alphabetically):
l	 Andrew Amato, head of the HIV/AIDS, STI and viral
Hepatitis programme at the European Centre for Disease
Prevention and Control
l	 Professor Adrian Streinu Cercel, National Infectious
Diseases Institute “Prof. Matei Bals”, Romania
l	 Charles Gore, president, World Hepatitis Alliance
l	 Karyn Kaplan, director of International Hepatitis/HIV
Policy  Advocacy, Treatment Action Group, New York
l	 Achim Kautz, vice president, European Liver Patients
Association
l	 Els Torreele, director of the Access to Essential Medicines
Initiative of the Public Health Programme, Open Society
Foundation, New York
l	 Stefan Wiktor, team lead for the Global Hepatitis
Programme, World Health Organisation
The report was written by Andrea Chipman and edited by Zoe
Tabary of The Economist Intelligence Unit.
About this
report
5© The Economist Intelligence Unit Limited 2014
Tackling hepatitis C: Moving towards an integrated policy approach
Elements of effective HCV
control
The hepatitis C virus (HCV) is usually symptomless
for decades, all the while slowly damaging the
liver and making treatment more costly and
complicated. With most of those infected in the
prime of their working life, HCV puts a heavy
burden on healthcare systems and adds to the
overall economic cost of the disease from missed
days of work and health visits. These costs rise
even further in the case of severe liver problems,
which can require transplants or other treatments
and procedures. As the disease peaks in many of
the worst-affected regions in the next decade,
these costs are likely to rise exponentially.
Yet HCV is largely curable, and early treatment
can greatly diminish the level of cirrhosis and
primary liver cancer. Good surveillance is thus
a key part of the fight at both the national and
the international level, and some countries have
indeed made progress since our 2012 report.
More than 85% of member states surveyed by
the World Health Organisation (WHO) in its 2013
Global policy report on the prevention and control
of viral hepatitis said they were conducting
routine surveillance for acute HCV, although
just 49% (such as Argentina, South Africa and
Croatia) conducted surveys for the chronic form
of the disease. In Africa, South-east Asia and
the Americas the levels of HCV are 25%, 33%
and 38%, respectively.
Effective disease surveillance:
The road to a joined-up solution1
The failure to
adequately
measure levels
of chronic HCV in
more than half
of the countries
surveyed by the
WHO means that
policymakers are
missing the larger
pool of undetected
cases.
Prevalence of chronic HCV infection
3.0%
2.0%–2.9%
1.0%–1.9%
1.0%
Not studied
Prevalence of Hepatitis C
virus infection
Source: Negro F, Alberti A. The global health burden of hepatitis C virus infection. Liver Int. 2011 Jul.
6 © The Economist Intelligence Unit Limited 2014
Tackling hepatitis C: Moving towards an integrated policy approach
While the identification of acute cases can
improve outcomes for those infected, it
ignores the more significant threat facing
many countries. Most governments, especially
in poorer countries, are focusing on the
incidence of the disease with initiatives that
focus on marginal populations where the virus
is concentrated, rather than dealing with
the prevalence of the disease in the broader
population. The failure to adequately measure
levels of chronic HCV in more than half of the
countries surveyed by the WHO means that
policymakers are missing the larger pool of
undetected cases. These are likely to be the
biggest drain on government resources owing
to the cost of managing the complications of
advanced liver disease.
“[European] member states have made huge
progress in cleaning up their data,” says Andrew
Amato, head of the HIV/AIDS, STI and viral
Hepatitis programme at the European Centre
for Disease Prevention and Control (ECDC),
an independent EU agency, adding that many
countries now separate acute and chronic HCV
surveillance and more than half follow standard
case definitions.
Patient and advocacy groups
in the front seat
Where national governments have lagged behind,
non-governmental organisations (NGOs) and
patient advocate groups have increasingly
stepped in to fill the gap. Groups such as the New
York-based Treatment Action Group (TAG), which
emerged from the HIV/AIDS activist movement,
and the World Hepatitis Alliance (WHA) have
helped advocates lobby for better awareness of
the disease and better access to treatment and
diagnosis options, as well as more simplified
forms of care.
The European Liver Patients Association (ELPA)
recently launched a project in conjunction with
the WHA to work with European countries,
analysing their current policies for addressing
HCV and helping stakeholders to develop
national strategies, according to Achim Kautz,
vice president of ELPA. The programme has
been completed in Romania and Germany and
is currently running in Greece, with six more
countries expected to participate by the end of
2014.
Regionally, the involvement of external
stakeholders has taken a variety of forms. In
western Europe and North America, charities
and other organisations, such as the Hepatitis
C Trust and ELPA, offer information and support
to patients and, in the case of ELPA, analyse
existing national and Europe-wide action plans
to develop an advocacy strategy.
There are many
barriers to tackling
the disease that
need to be taken
into account. One is
awareness, another
is testing, and the
healthcare system
in a lot of countries
isn’t set up for it.
Stefan Wiktor, team lead
for the Global Hepatitis
Programme, World Health
Organisation
There is a national surveillance system
for acute hepatitis C infection
There is a national surveillance system
for chronic hepatitis C infection
Types of surveillance in member states
reporting the existence of routine
surveillance for hepatitis C
(% respondents)
(% respondents)
Source: Global policy report on the prevention and control of
viral hepatitis, World Health Organisation, 2013.
Yes
Yes
No
No
86%
49%46%
9%
No response
5%
No responseNo response
5%5%
7© The Economist Intelligence Unit Limited 2014
Tackling hepatitis C: Moving towards an integrated policy approach
Consequently, campaigners are putting more
pressure on governments to improve data, testing
and diagnosis procedures in order to widen access
to treatment.
“There are many barriers to tackling the disease
that need to be taken into account,” says Dr
Wiktor. “One is awareness, another is testing, and
the healthcare system in a lot of countries isn’t
set up for it.”
A number of Latin American countries, including
Argentina, Brazil, Costa Rica, El Salvador and
Nicaragua, now offer free HCV testing to all
individuals, as do other countries around the
world such as Belarus, India, Iraq and Sudan. In
Brazil, Georgia and Thailand, there has been a
focus on ensuring that treatments are defined
as “essential medicines” or covered by national
health plans. Meanwhile, Egypt is continuing to
develop its HCV patient registry, which launched
in October 2012 with 32,000 patients.
In Asia, where patient groups have traditionally
been less mobilised, the Coalition to Eradicate
Viral Hepatitis in Asia Pacific (CEVHAP) raises
awareness of the disease, builds ties between key
regional stakeholders and conducts research to
support evidence-based policy. In other regions,
such as Africa and Latin America, however, there
is little in the way of regional co-ordination of
projects aimed specifically at those infected with
hepatitis C.
Governments under pressure
to confront HCV
A new generation of medicines has been shown to
cure HCV infection in as many as 90% of patients,
according to Stefan Wiktor, team leader for the
Global Hepatitis Programme at the WHO. Against
this backdrop, improving access to treatment
creates a significant opportunity and underscores
the need for broader national policies and
consistent management protocols to tackle HCV.
Romania. Around 3.4% of the total population
is estimated to be infected with the virus,
although this rises to 12% in some regions,
according to Mr Kautz of ELPA.
This has motivated the Romanian Liver Patients
Association (APHO) to launch a national
strategic plan to combat HCV. In June 2013 the
group published a white paper looking at four
main courses of action: prevention, detection,
monitoring and treatment.
Campaigners are now seeing the first fruits
of their efforts. A national registry for viral
hepatitis, established in February 2014, will,
when fully operational, screen patients for
all varieties of the disease and also provide
individual therapy and treatment protocols for
patients. The number of patients estimated to
need therapy is 300,000.
In Romania, the road to a co-ordinated plan
starts with a failure of sorts and is in many ways
typical of developing countries in the obstacles
the country faces in establishing an integrated
approach to HCV.
There is an absence of reliable data regarding
HCV prevalence, according to the Romanian
Hepatitis Action Plan, which notes that this is
largely due to “the lack of harmonised efforts
to identify transmission channels and infection
rates”.2
The country is ranked 25th out of 30
countries in the European Hepatitis Index
2012, which measures hepatitis care delivery. A
significant number of infections are believed to
stem from the period before 1989, when blood
supply was not routinely screened and reuse of
needles was common, according to Professor
Adrian Streinu Cercel of the National Infectious
Diseases Institute “Prof. Matei Bals” in
Case study: Towards an action plan in Romania
2
Romanian Hepatitis Action
Plan. Available at http://
www.elpa-info.org/elpa-
news---reader/items/
strategic-action-plan-
against-hepatitises-in-
romania-2013.htm
8 © The Economist Intelligence Unit Limited 2014
Tackling hepatitis C: Moving towards an integrated policy approach
Euro Hepatitis Index 2012 (comparison of hepatitis B and C care performance)
1 (top performer) France
2 Slovenia
3 Germany
4 Sweden
5 Portugal
6 Italy
7 UK
8 Croatia
9 Norway
10 Spain
11 Ireland
12 Switzerland
13 Belgium
14 Netherlands
15 Austria
16 Denmark
17 Finland
18 Poland
19 Luxembourg
20 Malta
21 Bulgaria
22 Greece
23 Cyprus
24 Slovakia
25 Romania
26 Czech Republic
27 Hungary
28 Latvia
29 Estonia
30 Lithuania
Source: Health Consumer Powerhouse
9© The Economist Intelligence Unit Limited 2014
Tackling hepatitis C: Moving towards an integrated policy approach
Identifying the gaps
Improving prevention measures is crucial
to reducing the impact of HCV, particularly
as the potential to cure a large number of
infected patients could relieve cash-strapped
governments of the cost of expensive medical
interventions resulting from long-term liver
damage and liver cancer. Initiatives worldwide
range from primary prevention, such as limiting
unsafe health practices or providing needle
exchanges for people who inject drugs (PWIDs),
to secondary prevention, such as testing for the
disease and early treatment, which can identify
those infected and improve their prospects of
being cured.
The prevention imperative
2
Developing the national plan for viral hepatitis prevention and control
Awareness-raising
Integrating viral hepatitis programmes into other health services
58.7%
50.8%
Estimating the national burden of viral hepatitis
Viral hepatitis surveillance
Assessing the economic impact of viral hepatitis
Developing tools to assess the effectiveness of interventions
54.8%
52.4%
43.7%
49.2%
Increasing coverage of the birth dose of the hepatitis B vaccine
31.7
Developing education/training programmes for health professionals
Increasing access to diagnostics
Increasing access to treatment
Improving laboratory quality
* N = 113 (This response option was not included in the survey completed by Belarus, Columbia and countries in the South-east Asia Region.
Source: Global policy report on the prevention and control of viral hepatitis, World Health Organisation, 2013.
54.0%
49.2%
46.0%
44.6%*
48.4%
(% respondents)
Awareness-raising partnerships and resource mobilisation (first WHO strategic axis)
(% respondents)
Evidence-based policy and data for action (second WHO strategic axis)
(% respondents)
Prevention of transmission (third WHO strategic axis)
(% respondents)
Screening, care and treatment (fourth WHO strategic axis)
Viral hepatitis control and prevention: areas in which member states indicated interest in
receiving WHO assistance
10 © The Economist Intelligence Unit Limited 2014
Tackling hepatitis C: Moving towards an integrated policy approach
Prevention also requires better co-ordination
within healthcare systems, particularly with
regard to addressing low levels of knowledge
about HCV among healthcare workers. The
health system has been a major route for the
transmission of HCV, primarily in developing
countries, and while awareness of the need to
screen blood products and avoiding the reuse
of needles and other equipment has improved
in countries such as Russia and Bulgaria (which
both have national policies on injection safety
and infection control for blood banks), progress
towards eliminating dangerous behaviour
remains mixed. Even in Egypt, which has the
world’s largest HCV treatment programme, there
are some 500,000 new cases of HCV infection
each year, according to F DeWolfe Miller,
professor of epidemiology at Hawaii University.
Scotland’s Hepatitis C Action Plan is often cited
as a leading example of making the prevention
and treatment of HCV a mainstream healthcare
matter [see case study in our 2013 report].
While different regions face very different
levels of HCV infection, individual countries
have worked together to provide leadership on
international initiatives. Delegates from Brazil,
Egypt, Indonesia and Mongolia spoke at the
66th meeting of the World Health Assembly,
the decision-making body of the WHO, in 2013
and drafted a new resolution in January 2014 to
push for more concrete progress in fulfilling the
original 2010 WHO resolution, explains Charles
Gore, president of the World Hepatitis Alliance
(WHA). The new resolution calls for greater
“synergies” between viral hepatitis prevention
and control measures as well as between viral
hepatitis and non-communicable diseases in the
WHO Global Action Plan for 2013-20.
Patient groups and health authorities are
nevertheless putting forward more specific
recommendations to health bodies. ELPA’s
recent manifesto on policy measures to combat
chronic liver disease in 2014-19 recommends
that general practitioners make liver enzyme
tests mandatory in routine medical check-ups
for people between the ages of 20 and 60, and
that patients with elevated liver enzyme levels
be tested for possible causes, including HCV.
The American Association for the Study of Liver
Disease (AALSD) recommends HCV testing at
least once for anyone born between 1945 and
1965, a guideline also used by the US Centers for
Disease Control and Prevention (CDC), as well as
for healthcare workers exposed to blood products
through contact with needles and patients who
received blood transfusions or organ transplants
before July 1992. It also advises annual testing
for those with increased risk factors for HCV,
such as PWIDs. “The more we do awareness
campaigns, the more countries are interested
in discussing the hepatitis problem itself,” says
ELPA’s Mr Kautz. Not only will information about
HCV then filter through to the public at large,
but it will also improve the ability of healthcare
professionals to recognise and treat the disease.
HIV/HCV co-infection helps to
channel campaigns
Globally, around 20% of people with HIV are
also infected with HCV, estimates Dr Wiktor from
the WHO. While research on the outcomes for
co-infected patients remains limited, there is
evidence that being HIV positive causes faster
liver damage from viral hepatitis; co-infected
patients are also twice as likely to develop cirrhosis
as people who only have HCV, according to the
Treatment Action Group (TAG).4
Many activists are taking lessons from the efforts
of HIV/AIDS campaigners to demand earlier
treatment. “One of the main things about the
HIV-AIDS movement has been global solidarity,
and HIV-AIDS advocates are now getting more
interested in HCV because everyone realises
that this is the new frontline,” says Els Torreele,
director of the Access to Essential Medicines
Initiative of the Public Health Programme at the
Open Society Foundation in New York.
Both Karyn Kaplan, director of international
Hepatitis/HIV Policy and Advocacy at the TAG,
and Mr Gore of the WHA note that the WHO’s
3
http://who.int/hiv/pub/
guidelines/hepatitis/en/
4
Karyn Kaplan and Tracy
Swan, Training Manual
for Treatment Advocates:
Hepatitis C Virus and
Coinfection with HIV,
Treatment Action Group
(TAG), New York, November
2013.
Globally, around
20% of people
with HIV are also
infected with HCV.
Source: WHO
The more we
do awareness
campaigns, the
more countries
are interested in
discussing the
hepatitis problem
itself.
Achim Kautz, vice president,
European Liver Patients
Association
11© The Economist Intelligence Unit Limited 2014
Tackling hepatitis C: Moving towards an integrated policy approach
recent decision to include its viral hepatitis
programme in its HIV programme will help to
raise the profile of HCV. “Where HIV overlaps,
there is quite a lot of expertise in things like
guidelines,” highlights Mr Gore, adding that
there are potential synergies in diagnosis and
treatment of both diseases. As an example
he refers to the potential to share the costly
laboratory equipment that the President’s
Emergency Plan for AIDS Relief (PEPFAR) of the
US government has donated to HIV-ravaged
developing countries. “You just need to change
the reagents and you can use 20% extra capacity
in some countries,” says Mr Gore. “Given
the high risk of liver cancer in HCV patients,
similar funding could be available from cancer
prevention budgets.” “We will need to integrate
the hepatitis programme into a lot of existing
programmes,” he adds. “People have got to stop
saying, can we afford a hepatitis programme
and start saying, how can we
afford it?”
12 © The Economist Intelligence Unit Limited 2014
Tackling hepatitis C: Moving towards an integrated policy approach
With surveillance still inconsistent in many
countries, activists and healthcare providers
are increasingly looking to reach out to those
who are at particularly high risk of becoming
infected with HCV. For activists and governments
alike, the process of reaching out involves
the recognition that socially marginalised
populations have different needs, respond to
different messages and frequently face stigma
when dealing with healthcare staff that can
dissuade them from getting tested or treated.
Against that backdrop, much of the activism and
outreach in the past couple of years has targeted
three separate groups: PWIDs, prisoners and
vulnerable ethnic or national groups such as
South Asian populations in the UK.
Between 60% and 80% of PWIDs are infected
with HCV worldwide, according to the WHO.5
Working with PWIDs has often involved harm-
reduction initiatives, which range from needle
exchanges to the supply of methadone.
However, the global economic crisis has
reduced government funding for some of
these programmes. “There are countries that
are managing to weather the economic crisis
relatively well in funding their health services
and countries where it is adversely affecting the
prevention side of their work,” says Dr Amato of
the ECDC. He notes that a reduction in funding
for harm reduction programmes targeted at
PWIDs in countries such as Greece and Romania
could lead to an upsurge of both HIV and HCV in
these countries.
Prisoners also tend to have a high prevalence of
HCV, especially in developing countries, because
of intravenous drug use and other risky behaviour
such as tattooing. In Georgia, where 6.7% of the
nationalpopulationisinfected—oneofthehighest
rates in Europe—pressure from patient groups led
the Ministry of Corrections to launch a programme
in March 2014 to treat HCV-infected patients in the
country’s prisons, where 18% of deaths are the
result of cirrhosis caused by HCV.6
The government
has committed to extending the programme to
universal national coverage by 2016.
“Everyone [in Georgia] knows someone who is
affected by HCV, but until recently there was
no treatment available whatsoever,” explains
Dr Torreele of the Open Society Foundation.
“Once patient groups started raising awareness,
people were very attentive, and there was a lot
of pressure on the government to start looking
into it.”
Elsewhere, campaigns have focused on high-
profile public messages. In the UK, the Hepatitis
C Trust runs a mobile outreach van that travels
around the country offering free testing and
onward referrals to those who test positive.
The van focuses its efforts on events or areas
with target populations, including PWIDs, the
homeless and South Asian populations.
Reaching out to vulnerable
populations3
5
Prevention  Control of
Viral Hepatitis Infection:
Framework for Global Action,
World Health Organisation,
2012.
6
The 18% figure is from
“Fight for C Hepatitis
treatment in full force”, by
Irma Kakhurashvili, Georgia
Today, Issue 676, August
2013.
Between 60% and
80% of people who
inject drugs are
infected with HCV
worldwide.
Source: WHO
13© The Economist Intelligence Unit Limited 2014
Tackling hepatitis C: Moving towards an integrated policy approach
The Thailand Treatment Action Group has
also developed a peer-education curriculum
with other NGOs, which has been employed
in harm reduction drop-in centres in most
regions of Thailand, reducing the harmful
consequences of activities such as intravenous
drug use. Part of this process could ultimately
involve integrating HCV into the training and
treatment programmes of Population Services
International, a global health organisation,
and the Global Fund, an international financing
organisation, which are already available to
HIV-infected PWIDs, according to Karyn Kaplan,
director of international Hepatitis/HIV Policy
and Advocacy at the TAG in New York. However,
the peer education model has remained
largely the preserve of NGOs and international
organisations, with the Thai government still
reluctant to support such programmes.
In Thailand, up to 90% of people who inject
drugs (PWIDs) have been found to be infected
with HCV.7
But with testing and treatment
services still not widely available and PWIDs
facing high levels of stigma and discrimination
in healthcare settings, many are unable to find
out about their HCV status.8
The Mitsampan Community Research Project
conducted a study from July through October
2011 to see how these barriers might be
overcome.9
The researchers trained 440
community-recruited intravenous drug
users as peer educators and taught them
how to administer surveys. Although the
study generally found that only one-third of
participants were aware of their status, those
who had received peer-based education on HCV
were significantly more likely to have had an
HCV test.
Case study: The benefits of peer education in
Thailand
7
L Ti, K Kaplan, K Hayashi,
P Suwannawong, E Wood, T
Kerr, “Low rates of hepatitis
C testing among people who
inject drugs in Thailand:
implications for peer-based
interventions”, The Journal
of Public Health, Vol. 35, No.
4, pp 578-584, January 18th
2013.
8
Ibid.
9
The project is a
collaboration between the
Mitsampan Harm Reduction
Centre in Bangkok, the
Thai AIDS Treatment Action
Group, Chulalongkorn
University and the British
Columbia Centre for
Excellence in HIV/AIDS.
In Thailand, up
to 90% of people
who inject drugs
(PWIDs) have been
found to be infected
with HCV.
14 © The Economist Intelligence Unit Limited 2014
Tackling hepatitis C: Moving towards an integrated policy approach
Conclusion
Awareness of the scale of the HCV problem has clearly
grown since our last report, and with it the determination
of governmental and non-governmental groups to lay the
groundwork for both closer consultation and a route to more
co-ordinated national strategies for dealing with the virus.
Yet concrete initiatives remain thin on the ground, and a
continued lack of resources, including scarce data about
the scale of the problem in individual countries, is impeding
further progress.
This is particularly dangerous as inaction is arguably the
riskiest form of behaviour associated with HCV, leading to
increased cases of liver cancer, with costlier treatment and
worse outcomes, as well as higher rates of transmission of the
virus. ELPA’s recent manifesto on chronic liver disease notes
that undiagnosed and untreated cases of HCV will lead to
further deterioration in patients’ conditions and an increasing
burden on European health systems. “The peak is expected
for 2020 to 2025,” it concludes. “If Europe wants to avert this
peak, it must act now.”
Patient groups and other advocates for those infected with
HCV have nevertheless shown that greater awareness of
the problem and public pressure can in some cases produce
rapid responses from governments. While the scale of the
problem and the potential solutions differ from one country
to another, a number of conclusions can be drawn from recent
developments.
Surveillance needs to improve and be
integrated with national strategies.
Better data on infection rates and the
groups most affected are crucial to
formulating a national policy on HCV.
National governments should continue
to use the advice and resources available
from both multinational institutions, such as the WHO, and
grassroots organisations to tailor health systems so that they
establish standards that are appropriate for local conditions
and circumstances, and integrated care models that are
effective in terms of both patient uptake and outcome.
Screening and diagnosis are key
components of prevention and must
reach vulnerable groups. With the
newest treatments potentially able
to eradicate the virus in a significant
proportion of cases, screening and early
diagnostic options will allow for earlier
treatment and more simplified forms of care, ultimately
reducing transmission among marginalised populations.
Better outreach can help mobilise support
for co-ordinated initiatives. Activists
and patient groups have found a number
of successful ways to target messages at
both high-risk groups and the general
population. Increasing awareness will be
key to mobilising healthcare stakeholders
and educating patients as the disease reaches peak levels in
the next decade.
While every effort has been taken to verify the accuracy
of this information, The Economist Intelligence Unit
Ltd. cannot accept any responsibility or liability
for reliance by any person on this report or any of
the information, opinions or conclusions set out
in this report.
This report was commissioned and funded by Janssen
Pharmaceutica NV. The views and opinions of the
authors are not necessarily those of Janssen.
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Tackling HCV: Moving Towards an Integrated Approach

  • 1. TACKLING HEPATITIS C: Moving towards an integrated policy approach Supported by:
  • 2. 1© The Economist Intelligence Unit Limited 2014 Tackling hepatitis C: Moving towards an integrated policy approach Contents Executive summary 2 About this report 4 1. Effective disease surveillance: The road to a joined-up solution 5 Elements of effective HCV control 5 Patient and advocacy groups in the front seat 6 Governments under pressure to confront HCV 6 Case study: Towards an action plan in Romania 7 2. The prevention imperative 8 Identifying the gaps 8 HIV/HCV co-infection helps to channel campaigns 9 3. Reaching out to vulnerable populations 10 Case study: The benefits of peer education in Thailand 11 Conclusion 12
  • 3. 2 © The Economist Intelligence Unit Limited 2014 Tackling hepatitis C: Moving towards an integrated policy approach Executive summary Over a year after the publication of The silent pandemic: Tackling hepatitis C with policy innovation, The Economist Intelligence Unit’s previous report on the subject, the hepatitis C virus (HCV) continues to pose a rising threat to healthcare systems worldwide. As many as 170m people, or 2.4% of the world’s population, are infected with HCV, according to the World Health Organisation (WHO), nearly five times the number estimated to be living with HIV.1 While mortality rates as a result of acute hepatitis have remained relatively constant over the past ten years, deaths from HCV complications, such as cirrhosis of the liver, have seen a much sharper upward trajectory. Therearecountriesineachregion of the world that suffer from high rates of infection: Georgia and Romania in Europe, Brazil and Argentina in Latin America, Mongolia, Indonesia and Taiwan in Asia, Egypt and Sub-Saharan countries in Africa, and the United States in North America. As a result, a number of these countries have played a leading role in multinational efforts to combat HCV. In our earlier report we found that the lack of sufficient knowledge and data about the disease and its prevalence, poor public awareness, the failure to follow through consistently with treatment where testing is available, and high rates of infection among marginal populations had created significant barriers to tackling HCV. In this update, we look at what progress has been made and the barriers that remain. The key findings include the following. Epidemiological data remain scarce, but awareness of the disease is growing. The continued lack of data remains a problem, with 2010 being the most recent year for which comprehensive global data are available. A number of governments as well as non- governmental organisations (NGOs) in countries ranging from Thailand to Brazil are accelerating efforts to improve education (particularly of high-risk groups), increase outreach programmes and make testing for the virus more accessible. Yet the number of those providing free testing remains small, eliminating another potential source of data about the spread of the disease. In addition, the relatively recent emergence of HCV means that many awareness campaigns and multinational initiatives are still focused on viral hepatitis more broadly, making it difficult to assess the extent to which national health authorities are addressing HCV separately from other strains of viral hepatitis. NGOs and patient groups are taking the lead. Patients and advocacy organisations are 1 Bulletin of the World Health Organisation, 2012; 90:540- 550; Guidance on prevention of viral hepatitis B and C in people who inject drugs, World Health Organisation, July 2012.
  • 4. 3© The Economist Intelligence Unit Limited 2014 Tackling hepatitis C: Moving towards an integrated policy approach playing a key role in shaping the policy agenda to tackle HCV. On a multinational level, groups such as the World Hepatitis Alliance (WHA), the European Liver Patients Association (ELPA) and the Coalition to Eradicate Viral Hepatitis in Asia Pacific (CEVHAP) have mobilised lawmakers and officials from the WHO to commit to a more integrated policy approach to help developing countries cope with what is expected to be an explosion of HCV cases over the next decade. “It’s an odd dynamic, where people are becoming more aware, but that hasn’t yet translated into real concrete action,” says Stefan Wiktor, team lead for the Global Hepatitis Programme at the WHO. “The idea is to try to harness some of this excitement and start moving it in a more aligned direction.” As a result, many initiatives during the past couple of years have focused on establishing multiple official pathways for the exchange of information and advice between the WHO, technical advisers, patient groups and national governments, including the WHO’s Framework for Global Action in 2012. A better knowledge of the disease underscores the need for a co-ordinated response covering a range of areas. Healthcare stakeholders are becoming more aware of the way in which HCV progresses and of the potential for curing a significant percentage of those who are infected if they are identified sufficiently early. As a result, more rapid testing and earlier diagnosis have become a priority for patient groups and health officials, as well as an important component of prevention. “What we see in general is that detection rates are slowly increasing, largely thanks to the activities of NGOs,” says Achim Kautz, vice president of ELPA. Initiatives with the greatest success rate so far tend to focus on HCV in a holistic way, rather than on one individual aspect. Global variations in addressing HCV persist. The ways in which governments deal with the threat posed by HCV vary substantially, with only a minority of countries—such as Egypt, which has the worst-affected national population (nearly one in five people have the virus)—taking a more aggressive approach to testing, surveillance and treatment. On a regional basis, countries in Africa (with the exception of Egypt), eastern Europe and Central Asia have begun to expand access to testing and diagnosis of the disease only relatively recently. By contrast, larger middle- income countries in Latin America and South- east Asia appear to be mobilising resources more successfully.
  • 5. 4 © The Economist Intelligence Unit Limited 2014 Tackling hepatitis C: Moving towards an integrated policy approach Tackling hepatitis C: Moving towards an integrated policy approach is an Economist Intelligence Unit report, commissioned and funded by Janssen, which investigates national and multinational policy initiatives to combat the hepatitis C virus (HCV). The findings of this report are based on desk research and interviews with a range of healthcare experts. Our thanks are due to the following for their time and insight (listed alphabetically): l Andrew Amato, head of the HIV/AIDS, STI and viral Hepatitis programme at the European Centre for Disease Prevention and Control l Professor Adrian Streinu Cercel, National Infectious Diseases Institute “Prof. Matei Bals”, Romania l Charles Gore, president, World Hepatitis Alliance l Karyn Kaplan, director of International Hepatitis/HIV Policy Advocacy, Treatment Action Group, New York l Achim Kautz, vice president, European Liver Patients Association l Els Torreele, director of the Access to Essential Medicines Initiative of the Public Health Programme, Open Society Foundation, New York l Stefan Wiktor, team lead for the Global Hepatitis Programme, World Health Organisation The report was written by Andrea Chipman and edited by Zoe Tabary of The Economist Intelligence Unit. About this report
  • 6. 5© The Economist Intelligence Unit Limited 2014 Tackling hepatitis C: Moving towards an integrated policy approach Elements of effective HCV control The hepatitis C virus (HCV) is usually symptomless for decades, all the while slowly damaging the liver and making treatment more costly and complicated. With most of those infected in the prime of their working life, HCV puts a heavy burden on healthcare systems and adds to the overall economic cost of the disease from missed days of work and health visits. These costs rise even further in the case of severe liver problems, which can require transplants or other treatments and procedures. As the disease peaks in many of the worst-affected regions in the next decade, these costs are likely to rise exponentially. Yet HCV is largely curable, and early treatment can greatly diminish the level of cirrhosis and primary liver cancer. Good surveillance is thus a key part of the fight at both the national and the international level, and some countries have indeed made progress since our 2012 report. More than 85% of member states surveyed by the World Health Organisation (WHO) in its 2013 Global policy report on the prevention and control of viral hepatitis said they were conducting routine surveillance for acute HCV, although just 49% (such as Argentina, South Africa and Croatia) conducted surveys for the chronic form of the disease. In Africa, South-east Asia and the Americas the levels of HCV are 25%, 33% and 38%, respectively. Effective disease surveillance: The road to a joined-up solution1 The failure to adequately measure levels of chronic HCV in more than half of the countries surveyed by the WHO means that policymakers are missing the larger pool of undetected cases. Prevalence of chronic HCV infection 3.0% 2.0%–2.9% 1.0%–1.9% 1.0% Not studied Prevalence of Hepatitis C virus infection Source: Negro F, Alberti A. The global health burden of hepatitis C virus infection. Liver Int. 2011 Jul.
  • 7. 6 © The Economist Intelligence Unit Limited 2014 Tackling hepatitis C: Moving towards an integrated policy approach While the identification of acute cases can improve outcomes for those infected, it ignores the more significant threat facing many countries. Most governments, especially in poorer countries, are focusing on the incidence of the disease with initiatives that focus on marginal populations where the virus is concentrated, rather than dealing with the prevalence of the disease in the broader population. The failure to adequately measure levels of chronic HCV in more than half of the countries surveyed by the WHO means that policymakers are missing the larger pool of undetected cases. These are likely to be the biggest drain on government resources owing to the cost of managing the complications of advanced liver disease. “[European] member states have made huge progress in cleaning up their data,” says Andrew Amato, head of the HIV/AIDS, STI and viral Hepatitis programme at the European Centre for Disease Prevention and Control (ECDC), an independent EU agency, adding that many countries now separate acute and chronic HCV surveillance and more than half follow standard case definitions. Patient and advocacy groups in the front seat Where national governments have lagged behind, non-governmental organisations (NGOs) and patient advocate groups have increasingly stepped in to fill the gap. Groups such as the New York-based Treatment Action Group (TAG), which emerged from the HIV/AIDS activist movement, and the World Hepatitis Alliance (WHA) have helped advocates lobby for better awareness of the disease and better access to treatment and diagnosis options, as well as more simplified forms of care. The European Liver Patients Association (ELPA) recently launched a project in conjunction with the WHA to work with European countries, analysing their current policies for addressing HCV and helping stakeholders to develop national strategies, according to Achim Kautz, vice president of ELPA. The programme has been completed in Romania and Germany and is currently running in Greece, with six more countries expected to participate by the end of 2014. Regionally, the involvement of external stakeholders has taken a variety of forms. In western Europe and North America, charities and other organisations, such as the Hepatitis C Trust and ELPA, offer information and support to patients and, in the case of ELPA, analyse existing national and Europe-wide action plans to develop an advocacy strategy. There are many barriers to tackling the disease that need to be taken into account. One is awareness, another is testing, and the healthcare system in a lot of countries isn’t set up for it. Stefan Wiktor, team lead for the Global Hepatitis Programme, World Health Organisation There is a national surveillance system for acute hepatitis C infection There is a national surveillance system for chronic hepatitis C infection Types of surveillance in member states reporting the existence of routine surveillance for hepatitis C (% respondents) (% respondents) Source: Global policy report on the prevention and control of viral hepatitis, World Health Organisation, 2013. Yes Yes No No 86% 49%46% 9% No response 5% No responseNo response 5%5%
  • 8. 7© The Economist Intelligence Unit Limited 2014 Tackling hepatitis C: Moving towards an integrated policy approach Consequently, campaigners are putting more pressure on governments to improve data, testing and diagnosis procedures in order to widen access to treatment. “There are many barriers to tackling the disease that need to be taken into account,” says Dr Wiktor. “One is awareness, another is testing, and the healthcare system in a lot of countries isn’t set up for it.” A number of Latin American countries, including Argentina, Brazil, Costa Rica, El Salvador and Nicaragua, now offer free HCV testing to all individuals, as do other countries around the world such as Belarus, India, Iraq and Sudan. In Brazil, Georgia and Thailand, there has been a focus on ensuring that treatments are defined as “essential medicines” or covered by national health plans. Meanwhile, Egypt is continuing to develop its HCV patient registry, which launched in October 2012 with 32,000 patients. In Asia, where patient groups have traditionally been less mobilised, the Coalition to Eradicate Viral Hepatitis in Asia Pacific (CEVHAP) raises awareness of the disease, builds ties between key regional stakeholders and conducts research to support evidence-based policy. In other regions, such as Africa and Latin America, however, there is little in the way of regional co-ordination of projects aimed specifically at those infected with hepatitis C. Governments under pressure to confront HCV A new generation of medicines has been shown to cure HCV infection in as many as 90% of patients, according to Stefan Wiktor, team leader for the Global Hepatitis Programme at the WHO. Against this backdrop, improving access to treatment creates a significant opportunity and underscores the need for broader national policies and consistent management protocols to tackle HCV. Romania. Around 3.4% of the total population is estimated to be infected with the virus, although this rises to 12% in some regions, according to Mr Kautz of ELPA. This has motivated the Romanian Liver Patients Association (APHO) to launch a national strategic plan to combat HCV. In June 2013 the group published a white paper looking at four main courses of action: prevention, detection, monitoring and treatment. Campaigners are now seeing the first fruits of their efforts. A national registry for viral hepatitis, established in February 2014, will, when fully operational, screen patients for all varieties of the disease and also provide individual therapy and treatment protocols for patients. The number of patients estimated to need therapy is 300,000. In Romania, the road to a co-ordinated plan starts with a failure of sorts and is in many ways typical of developing countries in the obstacles the country faces in establishing an integrated approach to HCV. There is an absence of reliable data regarding HCV prevalence, according to the Romanian Hepatitis Action Plan, which notes that this is largely due to “the lack of harmonised efforts to identify transmission channels and infection rates”.2 The country is ranked 25th out of 30 countries in the European Hepatitis Index 2012, which measures hepatitis care delivery. A significant number of infections are believed to stem from the period before 1989, when blood supply was not routinely screened and reuse of needles was common, according to Professor Adrian Streinu Cercel of the National Infectious Diseases Institute “Prof. Matei Bals” in Case study: Towards an action plan in Romania 2 Romanian Hepatitis Action Plan. Available at http:// www.elpa-info.org/elpa- news---reader/items/ strategic-action-plan- against-hepatitises-in- romania-2013.htm
  • 9. 8 © The Economist Intelligence Unit Limited 2014 Tackling hepatitis C: Moving towards an integrated policy approach Euro Hepatitis Index 2012 (comparison of hepatitis B and C care performance) 1 (top performer) France 2 Slovenia 3 Germany 4 Sweden 5 Portugal 6 Italy 7 UK 8 Croatia 9 Norway 10 Spain 11 Ireland 12 Switzerland 13 Belgium 14 Netherlands 15 Austria 16 Denmark 17 Finland 18 Poland 19 Luxembourg 20 Malta 21 Bulgaria 22 Greece 23 Cyprus 24 Slovakia 25 Romania 26 Czech Republic 27 Hungary 28 Latvia 29 Estonia 30 Lithuania Source: Health Consumer Powerhouse
  • 10. 9© The Economist Intelligence Unit Limited 2014 Tackling hepatitis C: Moving towards an integrated policy approach Identifying the gaps Improving prevention measures is crucial to reducing the impact of HCV, particularly as the potential to cure a large number of infected patients could relieve cash-strapped governments of the cost of expensive medical interventions resulting from long-term liver damage and liver cancer. Initiatives worldwide range from primary prevention, such as limiting unsafe health practices or providing needle exchanges for people who inject drugs (PWIDs), to secondary prevention, such as testing for the disease and early treatment, which can identify those infected and improve their prospects of being cured. The prevention imperative 2 Developing the national plan for viral hepatitis prevention and control Awareness-raising Integrating viral hepatitis programmes into other health services 58.7% 50.8% Estimating the national burden of viral hepatitis Viral hepatitis surveillance Assessing the economic impact of viral hepatitis Developing tools to assess the effectiveness of interventions 54.8% 52.4% 43.7% 49.2% Increasing coverage of the birth dose of the hepatitis B vaccine 31.7 Developing education/training programmes for health professionals Increasing access to diagnostics Increasing access to treatment Improving laboratory quality * N = 113 (This response option was not included in the survey completed by Belarus, Columbia and countries in the South-east Asia Region. Source: Global policy report on the prevention and control of viral hepatitis, World Health Organisation, 2013. 54.0% 49.2% 46.0% 44.6%* 48.4% (% respondents) Awareness-raising partnerships and resource mobilisation (first WHO strategic axis) (% respondents) Evidence-based policy and data for action (second WHO strategic axis) (% respondents) Prevention of transmission (third WHO strategic axis) (% respondents) Screening, care and treatment (fourth WHO strategic axis) Viral hepatitis control and prevention: areas in which member states indicated interest in receiving WHO assistance
  • 11. 10 © The Economist Intelligence Unit Limited 2014 Tackling hepatitis C: Moving towards an integrated policy approach Prevention also requires better co-ordination within healthcare systems, particularly with regard to addressing low levels of knowledge about HCV among healthcare workers. The health system has been a major route for the transmission of HCV, primarily in developing countries, and while awareness of the need to screen blood products and avoiding the reuse of needles and other equipment has improved in countries such as Russia and Bulgaria (which both have national policies on injection safety and infection control for blood banks), progress towards eliminating dangerous behaviour remains mixed. Even in Egypt, which has the world’s largest HCV treatment programme, there are some 500,000 new cases of HCV infection each year, according to F DeWolfe Miller, professor of epidemiology at Hawaii University. Scotland’s Hepatitis C Action Plan is often cited as a leading example of making the prevention and treatment of HCV a mainstream healthcare matter [see case study in our 2013 report]. While different regions face very different levels of HCV infection, individual countries have worked together to provide leadership on international initiatives. Delegates from Brazil, Egypt, Indonesia and Mongolia spoke at the 66th meeting of the World Health Assembly, the decision-making body of the WHO, in 2013 and drafted a new resolution in January 2014 to push for more concrete progress in fulfilling the original 2010 WHO resolution, explains Charles Gore, president of the World Hepatitis Alliance (WHA). The new resolution calls for greater “synergies” between viral hepatitis prevention and control measures as well as between viral hepatitis and non-communicable diseases in the WHO Global Action Plan for 2013-20. Patient groups and health authorities are nevertheless putting forward more specific recommendations to health bodies. ELPA’s recent manifesto on policy measures to combat chronic liver disease in 2014-19 recommends that general practitioners make liver enzyme tests mandatory in routine medical check-ups for people between the ages of 20 and 60, and that patients with elevated liver enzyme levels be tested for possible causes, including HCV. The American Association for the Study of Liver Disease (AALSD) recommends HCV testing at least once for anyone born between 1945 and 1965, a guideline also used by the US Centers for Disease Control and Prevention (CDC), as well as for healthcare workers exposed to blood products through contact with needles and patients who received blood transfusions or organ transplants before July 1992. It also advises annual testing for those with increased risk factors for HCV, such as PWIDs. “The more we do awareness campaigns, the more countries are interested in discussing the hepatitis problem itself,” says ELPA’s Mr Kautz. Not only will information about HCV then filter through to the public at large, but it will also improve the ability of healthcare professionals to recognise and treat the disease. HIV/HCV co-infection helps to channel campaigns Globally, around 20% of people with HIV are also infected with HCV, estimates Dr Wiktor from the WHO. While research on the outcomes for co-infected patients remains limited, there is evidence that being HIV positive causes faster liver damage from viral hepatitis; co-infected patients are also twice as likely to develop cirrhosis as people who only have HCV, according to the Treatment Action Group (TAG).4 Many activists are taking lessons from the efforts of HIV/AIDS campaigners to demand earlier treatment. “One of the main things about the HIV-AIDS movement has been global solidarity, and HIV-AIDS advocates are now getting more interested in HCV because everyone realises that this is the new frontline,” says Els Torreele, director of the Access to Essential Medicines Initiative of the Public Health Programme at the Open Society Foundation in New York. Both Karyn Kaplan, director of international Hepatitis/HIV Policy and Advocacy at the TAG, and Mr Gore of the WHA note that the WHO’s 3 http://who.int/hiv/pub/ guidelines/hepatitis/en/ 4 Karyn Kaplan and Tracy Swan, Training Manual for Treatment Advocates: Hepatitis C Virus and Coinfection with HIV, Treatment Action Group (TAG), New York, November 2013. Globally, around 20% of people with HIV are also infected with HCV. Source: WHO The more we do awareness campaigns, the more countries are interested in discussing the hepatitis problem itself. Achim Kautz, vice president, European Liver Patients Association
  • 12. 11© The Economist Intelligence Unit Limited 2014 Tackling hepatitis C: Moving towards an integrated policy approach recent decision to include its viral hepatitis programme in its HIV programme will help to raise the profile of HCV. “Where HIV overlaps, there is quite a lot of expertise in things like guidelines,” highlights Mr Gore, adding that there are potential synergies in diagnosis and treatment of both diseases. As an example he refers to the potential to share the costly laboratory equipment that the President’s Emergency Plan for AIDS Relief (PEPFAR) of the US government has donated to HIV-ravaged developing countries. “You just need to change the reagents and you can use 20% extra capacity in some countries,” says Mr Gore. “Given the high risk of liver cancer in HCV patients, similar funding could be available from cancer prevention budgets.” “We will need to integrate the hepatitis programme into a lot of existing programmes,” he adds. “People have got to stop saying, can we afford a hepatitis programme and start saying, how can we afford it?”
  • 13. 12 © The Economist Intelligence Unit Limited 2014 Tackling hepatitis C: Moving towards an integrated policy approach With surveillance still inconsistent in many countries, activists and healthcare providers are increasingly looking to reach out to those who are at particularly high risk of becoming infected with HCV. For activists and governments alike, the process of reaching out involves the recognition that socially marginalised populations have different needs, respond to different messages and frequently face stigma when dealing with healthcare staff that can dissuade them from getting tested or treated. Against that backdrop, much of the activism and outreach in the past couple of years has targeted three separate groups: PWIDs, prisoners and vulnerable ethnic or national groups such as South Asian populations in the UK. Between 60% and 80% of PWIDs are infected with HCV worldwide, according to the WHO.5 Working with PWIDs has often involved harm- reduction initiatives, which range from needle exchanges to the supply of methadone. However, the global economic crisis has reduced government funding for some of these programmes. “There are countries that are managing to weather the economic crisis relatively well in funding their health services and countries where it is adversely affecting the prevention side of their work,” says Dr Amato of the ECDC. He notes that a reduction in funding for harm reduction programmes targeted at PWIDs in countries such as Greece and Romania could lead to an upsurge of both HIV and HCV in these countries. Prisoners also tend to have a high prevalence of HCV, especially in developing countries, because of intravenous drug use and other risky behaviour such as tattooing. In Georgia, where 6.7% of the nationalpopulationisinfected—oneofthehighest rates in Europe—pressure from patient groups led the Ministry of Corrections to launch a programme in March 2014 to treat HCV-infected patients in the country’s prisons, where 18% of deaths are the result of cirrhosis caused by HCV.6 The government has committed to extending the programme to universal national coverage by 2016. “Everyone [in Georgia] knows someone who is affected by HCV, but until recently there was no treatment available whatsoever,” explains Dr Torreele of the Open Society Foundation. “Once patient groups started raising awareness, people were very attentive, and there was a lot of pressure on the government to start looking into it.” Elsewhere, campaigns have focused on high- profile public messages. In the UK, the Hepatitis C Trust runs a mobile outreach van that travels around the country offering free testing and onward referrals to those who test positive. The van focuses its efforts on events or areas with target populations, including PWIDs, the homeless and South Asian populations. Reaching out to vulnerable populations3 5 Prevention Control of Viral Hepatitis Infection: Framework for Global Action, World Health Organisation, 2012. 6 The 18% figure is from “Fight for C Hepatitis treatment in full force”, by Irma Kakhurashvili, Georgia Today, Issue 676, August 2013. Between 60% and 80% of people who inject drugs are infected with HCV worldwide. Source: WHO
  • 14. 13© The Economist Intelligence Unit Limited 2014 Tackling hepatitis C: Moving towards an integrated policy approach The Thailand Treatment Action Group has also developed a peer-education curriculum with other NGOs, which has been employed in harm reduction drop-in centres in most regions of Thailand, reducing the harmful consequences of activities such as intravenous drug use. Part of this process could ultimately involve integrating HCV into the training and treatment programmes of Population Services International, a global health organisation, and the Global Fund, an international financing organisation, which are already available to HIV-infected PWIDs, according to Karyn Kaplan, director of international Hepatitis/HIV Policy and Advocacy at the TAG in New York. However, the peer education model has remained largely the preserve of NGOs and international organisations, with the Thai government still reluctant to support such programmes. In Thailand, up to 90% of people who inject drugs (PWIDs) have been found to be infected with HCV.7 But with testing and treatment services still not widely available and PWIDs facing high levels of stigma and discrimination in healthcare settings, many are unable to find out about their HCV status.8 The Mitsampan Community Research Project conducted a study from July through October 2011 to see how these barriers might be overcome.9 The researchers trained 440 community-recruited intravenous drug users as peer educators and taught them how to administer surveys. Although the study generally found that only one-third of participants were aware of their status, those who had received peer-based education on HCV were significantly more likely to have had an HCV test. Case study: The benefits of peer education in Thailand 7 L Ti, K Kaplan, K Hayashi, P Suwannawong, E Wood, T Kerr, “Low rates of hepatitis C testing among people who inject drugs in Thailand: implications for peer-based interventions”, The Journal of Public Health, Vol. 35, No. 4, pp 578-584, January 18th 2013. 8 Ibid. 9 The project is a collaboration between the Mitsampan Harm Reduction Centre in Bangkok, the Thai AIDS Treatment Action Group, Chulalongkorn University and the British Columbia Centre for Excellence in HIV/AIDS. In Thailand, up to 90% of people who inject drugs (PWIDs) have been found to be infected with HCV.
  • 15. 14 © The Economist Intelligence Unit Limited 2014 Tackling hepatitis C: Moving towards an integrated policy approach Conclusion Awareness of the scale of the HCV problem has clearly grown since our last report, and with it the determination of governmental and non-governmental groups to lay the groundwork for both closer consultation and a route to more co-ordinated national strategies for dealing with the virus. Yet concrete initiatives remain thin on the ground, and a continued lack of resources, including scarce data about the scale of the problem in individual countries, is impeding further progress. This is particularly dangerous as inaction is arguably the riskiest form of behaviour associated with HCV, leading to increased cases of liver cancer, with costlier treatment and worse outcomes, as well as higher rates of transmission of the virus. ELPA’s recent manifesto on chronic liver disease notes that undiagnosed and untreated cases of HCV will lead to further deterioration in patients’ conditions and an increasing burden on European health systems. “The peak is expected for 2020 to 2025,” it concludes. “If Europe wants to avert this peak, it must act now.” Patient groups and other advocates for those infected with HCV have nevertheless shown that greater awareness of the problem and public pressure can in some cases produce rapid responses from governments. While the scale of the problem and the potential solutions differ from one country to another, a number of conclusions can be drawn from recent developments. Surveillance needs to improve and be integrated with national strategies. Better data on infection rates and the groups most affected are crucial to formulating a national policy on HCV. National governments should continue to use the advice and resources available from both multinational institutions, such as the WHO, and grassroots organisations to tailor health systems so that they establish standards that are appropriate for local conditions and circumstances, and integrated care models that are effective in terms of both patient uptake and outcome. Screening and diagnosis are key components of prevention and must reach vulnerable groups. With the newest treatments potentially able to eradicate the virus in a significant proportion of cases, screening and early diagnostic options will allow for earlier treatment and more simplified forms of care, ultimately reducing transmission among marginalised populations. Better outreach can help mobilise support for co-ordinated initiatives. Activists and patient groups have found a number of successful ways to target messages at both high-risk groups and the general population. Increasing awareness will be key to mobilising healthcare stakeholders and educating patients as the disease reaches peak levels in the next decade.
  • 16. While every effort has been taken to verify the accuracy of this information, The Economist Intelligence Unit Ltd. cannot accept any responsibility or liability for reliance by any person on this report or any of the information, opinions or conclusions set out in this report. This report was commissioned and funded by Janssen Pharmaceutica NV. The views and opinions of the authors are not necessarily those of Janssen.
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