Civil Society - Introduction

Main Messages

Civil society is helping to define a new era in the global response to viral hepatitis.

The burden of disease from the five major types of viral hepatitis – A, B, C, D and E – urgently demands the world’s attention. The complexity of viral hepatitis virtually ensures that this group of diseases will not be brought under control by science alone. Instead, people with many different kinds of expertise must work from within and outside of the medical and public health establishments to translate technical knowledge into practical solutions.

As the World Health Assembly’s passage of viral hepatitis resolutions WHA 63.18 in 2010 and WHA 67.6 in 2014 reflects, civil society is helping to define a new era in the global response to viral hepatitis. However, the World Hepatitis Alliance is concerned about civil society being insufficiently involved at the national level.

Governments and the international community must improve their efforts.

Efforts at the national and subnational levels must be tailored to address the diverse vaccination, awareness, prevention, screening and treatment needs of people in different settings. International actors can play an important role in this regard by providing government and civil society stakeholders with tools and resources that can be adapted to fit a wide range of epidemiological and social situations.

To support informed decision-making, viral hepatitis monitoring and reporting activities must be greatly expanded and strengthened in many countries. Furthermore, monitoring and reporting need to be systematised globally, with all countries collecting data in accordance with the same indicators of the hepatitis disease burden as well as indicators of progress toward prevention and treatment goals.

Governments can address viral hepatitis more effectively with the help of strong civil society partners.

In recent decades, civil society actors have made invaluable contributions to the global response to public health issues such as reproductive health, HIV and cancer. Involvement of such a nature is our only hope for overcoming the immense barriers to viral hepatitis prevention and control.

Within the civil society realm, the special role of hepatitis patient groups needs to be recognised. Patient groups are uniquely qualified to propose and help implement solutions to problems facing viral hepatitis patients and those who are at high risk of infection.

From a pragmatic standpoint, it is smart for governments and other key stakeholders to welcome the involvement and advocacy efforts of hepatitis patient groups and their allies. From a human rights standpoint, giving the members of these groups a voice in the policy discourse recognises their right to participate in decision-making about the health issues that affect them.

Building a unified global response to hepatitis requires building relationships among diverse stakeholders.

The World Hepatitis Alliance seeks to ensure that a unified global response to viral hepatitis is manifested in the comprehensive national strategies that all countries are being encouraged to develop. A solid strategic foundation exists upon which countries can build. The components of this foundation are put forth in the World Health Assembly viral hepatitis resolutions and in the World Health Organization (WHO) viral hepatitis strategic framework. 1,2,3

As these documents reflect, we already know what to do in many regards in order to prevent new infections and to reduce suffering and death from viral hepatitis. The challenge is to apply this knowledge – which in many parts of the world will involve overcoming formidable barriers relating to complacency, ignorance, stigma and resource limitations. In light of these barriers, the World Hepatitis Alliance believes that building a unified global response to hepatitis is fundamentally about building relationships between stakeholders at all levels – globally, nationally and locally.

It is hoped that the World Health Organization, through its global headquarters and its regional and country offices, will serve as an important facilitator of relationships between government and civil society representatives. WHO can also contribute to a unified global response to viral hepatitis by issuing much-needed policy and technical guidance.

Encouraging diverse actors to participate in new forms of partnership is of paramount importance because the response to viral hepatitis must take into account many different types of public health and development issues. All voices need to be heard if the global community is to make real progress on viral hepatitis, one of the most complex health threats of the twenty-first century.

1. Introduction: Why We Need a Unified Global Response to Viral Hepatitis

“The development of direct-acting antiviral agents has revolutionised [hepatitis C] treatment by offering genuine prospects for the first comprehensive cure of a chronic viral infection in humans.” – Raymond T. Chung and Thomas F. Baumert, writing in The New England Journal of Medicine4

“The cost of the interferon and ribavirin treatment regimen is very expensive in Mongolia. ... It is common for people who receive such treatment [for hepatitis C] to incur out-of-pocket costs of more than US$ 20,000. Mongolia is a low-income country [and] nearly 30% of the ... population is living below the poverty line of US$ 2 per day. Because of these brutal realities, odds are really stacked against Mongolians, and it is no surprise that Mongolia has the highest liver cancer mortality rate in the world.” – Mongolian respondent to the World Hepatitis Alliance 2014 civil society survey

The global response to viral hepatitis is entering a new era – but not the one that might be suggested by the flurry of interest in new hepatitis C drugs with much higher cure rates.

Recent treatment advances are indeed remarkable, especially considering that the virus targeted by these drugs was identified less than three decades ago. But there is an enormous difference between pharmaceutical companies creating a product that can cure a disease and afflicted people obtaining the drugs, care and support that they need in order to regain their health.

Excitement about the “medical triumph” of direct-acting antivirals, as a headline in The New England Journal of Medicine proclaimed it, threatens to overshadow health system shortcomings that may prevent many people with chronic hepatitis C from being treated successfully. Factors potentially limiting access to treatment go far beyond the high cost of the new regimens. Furthermore, there is also insufficient awareness around the world about the need to intensify efforts to prevent all types of viral hepatitis and to challenge hepatitis-related stigma and discrimination.

How World Hepatitis Day contributes to a unified global response World Hepatitis Day was launched in 2008 in response to concern about low awareness of viral hepatitis and lack of willingness to make

World Hepatitis Day was launched in 2008 in response to concern about low awareness of viral hepatitis and lack of willingness to make it a political priority on par with other major communicable diseases. From the outset, World Hepatitis Day has generated widespread public and media interest, as well as support from governments, nongov­ern­mental organisations and supranational bodies.

In May 2010 the World Health Assembly passed resolution WHA63.18 on viral hepatitis. The resolution provides official endorsement of World Hepatitis Day, with 28 July designated as the date for national and international awareness-raising efforts calling attention to various aspects of viral hepatitis. Thousands of World Hepatitis Day events have taken place in dozens of countries over the years, ranging from ministerial meetings to rock concerts. Numerous events spearheaded or co-coordinated by hepatitis patient groups and their partners are designed to address specific national and community-level needs and priorities. While World Hepatitis Day events often have a national and local focus, they collectively contribute to a unified global response by showing policy-makers that communities in different countries and regions are confronting many of the same key issues.

The theme for World Hepatitis Day 2014, “Hepatitis: think again,” guided the development of eight posters featuring ten key messages. The messages were designed to encourage people to consider different aspects of viral hepatitis such as prevention, treatment and stigma. One of the 2014 posters appears on the preceding page. World Hepatitis Day posters from earlier years appear elsewhere in this chapter.

Thus, while the World Hepatitis Alliance enthusiastically welcomes the great progress in relation to hepatitis C, its member organisations are focusing on a much broader array of issues. The question of who will be able to afford the new drugs is looming large in many countries, while elsewhere there is concern that not even the highly imperfect standard-of-care treatment for hepatitis C – pegylated interferon and ribavirin – is sufficiently available.

Meanwhile, hepatitis B – which cannot be cured – poses a greater threat than hepatitis C in some countries, yet receives even less attention in some settings. To the limited extent that it has been priortised, the main focus has been on the three childhood vaccination doses. The critical role of birth dose vaccination in preventing perinatal hepatitis B transmission has been widely overlooked, as has been the importance of treatment regimens that can reduce the risk of hepatitis B-related liver cancer.

Hepatitis A and hepatitis E are known more for causing short-term discomfort than severe disease. Yet they jointly claim 160,000 lives per year, primarily in resource-limited countries, where they can easily spread through contaminated food and water. Furthermore, even mild illness from either of these viruses can impose a financial burden on households because of lost productivity. Considerable suffering would be prevented with ongoing access to safe water and adequate sanitation.

Recognising that this situation is unacceptable, civil society actors are compelled to work in new ways to influence the response to viral hepatitis on a global scale. This is the “new era” that should be celebrated – one defined by something more important than any single biomedical advance. The complexity of viral hepatitis virtually ensures that this group of diseases will not be brought under control by science alone. Instead, people with many different kinds of expertise must work from within and outside of the medical and public health establishments to translate technical knowledge into practical solutions for communities and individuals.

In 2010, the World Health Assembly approved resolution WHA 63.18 calling on the World Health Organization (WHO) and Member States to intensify efforts against viral hepatitis.5 WHA 63.18 addressed some of the key concerns of hepatitis patient groups that worked through the World Hepatitis Alliance and through their national governments to ensure that the World Health Assembly considered their perspectives. The resolution spurred promising changes at WHO, but few governments acted on the valuable strategic and technical guidance that the agency offered. The World Hepatitis Alliance and other concerned parties consequently re-engaged key Member States. In May 2014, the passage of World Health Assembly resolution 67.6 on viral hepatitis represented an effort to compel governments to make their commitment to addressing viral hepatitis more tangible.6

The World Hepatitis Alliance welcomes the progress seen in recent years, but it is concerned about civil society thus far being relegated to a fairly small role in the response to viral hepatitis at the national level. The road ahead is simply too difficult for conventional leaders to navigate on their own. A unified response – one involving hepatitis patient groups, other community and civil society stakeholders, medical professionals, researchers, donors and the private sector – is our only hope of bringing about the myriad changes that will be required in order to greatly reduce suffering and death from all types of viral hepatitis.

The World Hepatitis Alliance seeks to highlight civil society perspectives in this 2014 report – the first of its kind.  Civil society stakeholders are relative newcomers to the global public health arena, and their roles are still being defined in many intergovernmental and national forums, including those involving the World Health Organization. To ensure that their voices are heard, the 2014 Global Community Hepatitis Policy Report has been planned as a civil society response to information provided by governments for the 2013 hepatitis policy report published by WHO. That document, the Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States, is a welcome resource, but it only utilises information provided by governments. A full and accurate picture of the policy response to hepatitis at the country level requires additional input from stakeholders with diverse perspectives.

The basis for the 2014 Global Community Hepatitis Policy Report is a survey of World Hepatitis Alliance member organisations (patient groups) and other civil society actors, including nongovernmental organisations, academic institutions and medical associations. Each organisation was asked to review the information that its government submitted for the 2013 WHO report. The survey asked respondents to comment on the accuracy of the published information and furthermore invited them to provide a more in-depth analysis of key national hepatitis policy issues. Organisations based in countries where governments did not submit information for the 2013 WHO report were asked to comment generally on how their countries are addressing hepatitis. The survey was sent to approximately 800 organisations worldwide as well as being distributed online and via social media. Ninety-five responses were received. (See Annex A for details of the study methodology.)

1.1. What is the purpose of this report?

This report is envisioned as a resource and tool for all stakeholders involved in the policy response to hepatitis, including policy-makers, public health administrators, advocates, researchers, donors and intergovernmental agencies. It is intended to facilitate dialogue between civil society actors and other stakeholders at the community, national, regional and global levels. Additionally, the report is intended to support efforts to have viral hepatitis prioritised more by national and global leaders.

The following objectives further guided the development of the report:

  • Identifying gaps and shortcomings in national responses to viral hepatitis;
  • Promoting government accountability for explicit and implicit commitments expressed in the 2013 global hepatitis policy report; and
  • Conveying civil society priorities and patient perspectives to decision-makers and other stakeholders.

This report is organised as follows. The second chapter of the report presents the World Hepatitis Alliance’s views on key findings from the civil society survey and concludes with recommendations based on the findings. The third chapter of the report provides a global overview of all survey findings. Chapters four through nine present findings organised by geographical region. The six regions are Africa, the region of the Americas, the Eastern Mediterranean, Europe, South-East Asia and the Western Pacific. The regional chapters also summarise findings from each individual survey that was submitted. The study methodology is described in Annex A, and the survey instrument can be found in Annex B. Additional global summary data are presented in tables in Annex C. In Annex D, the full text of World Health Assembly resolution 67.6 is provided.

The World Hepatitis Alliance has created an interactive online tool for linking what governments reported about hepatitis policy issues (the 2013 WHO report findings) with what civil society survey respondents said in their surveys about the accuracy of their governments’ information (the findings presented in this report). Visitors to the report website (http://global-report.worldhepatitisalliance.org/en/) can see at a glance the points of agreement and disagreement between government and civil society organisations in each country for which both sets of information are available, and can also read civil society organisations’ comments about what their governments reported (Figure 1).

Figure 1. Interactive online tool for linking government information with civil society assessments of the information

1.2. What is the burden of disease from viral hepatitis?

The five major types of viral hepatitis contribute in very different ways to the overall burden of disease.

Hepatitis A and hepatitis E are known for causing sudden outbreaks as a result of food or water becoming contaminated. The largest outbreaks have infected many thousands of people.7,8

Hepatitis B is transmitted through blood and other body fluids. Although the virus is extremely infectious, it only causes chronic disease in some cases, most commonly when acquired in infancy or early childhood. No cure exists for chronic hepatitis B, and disease progression can lead to cirrhosis, liver cancer and death.9 Some cases of hepatitis B infection are complicated by co-infection with hepatitis D, a distinct virus that only strikes people who already have hepatitis B.10

 Hepatitis C is spread primarily through infected blood. Unlike hepatitis B, it is curable. People who do not have access to hepatitis C treatment or who do not respond to treatment may experience long-term liver damage leading to the same outcomes that occur with the progression of hepatitis B disease – cirrhosis, liver cancer and death.11

Other key points about the five major types of viral hepatitis are presented in Boxes 1-3.

Box 1. Hepatitis A and hepatitis E

  • Hepatitis A and hepatitis E outbreaks are most likely to occur in settings where access to safe water and adequate sanitation is limited.
  • The World Health Organization estimates that 119 million cases of hepatitis A occur every year, causing 31 million cases of symptomatic illness.12
  • There is no treatment for hepatitis A. Although a safe and effective vaccine has been introduced, it is not incorporated into routine immunisation programmes in all countries.
  • Hepatitis A most commonly causes relatively mild disease, with gastrointestinal and flu-like symptoms persisting for one to three weeks. It can take several weeks or months for people to recover fully, and thus hepatitis A has a considerable impact on work productivity and earnings.
  • Hepatitis A occasionally causes more severe disease, and older people are at higher risk of developing severe disease. Hepatitis A also can cause acute liver failure, which is a life-threatening condition.
  • According to Global Burden of Disease estimates, about 103,000 deaths in 2010 were attributable to hepatitis A.13
  • Hepatitis E is believed to infect 20 million people each year, with 3.4 million cases resulting in symptomatic illness.14
  • Most people with symptomatic hepatitis E experience mild disease, with symptoms such as nausea, vomiting and fever lasting for one to two weeks.
  • A small proportion of hepatitis E infections result in acute liver failure and death. Pregnant women and infants are at highest risk of death from hepatitis E.
  • According to Global Burden of Disease estimates, hepatitis E caused 57,000 deaths in 2010.15
  • A vaccine for hepatitis E was licensed in China in 2012. It is not yet available in other countries, and there is no clear consensus regarding the role of vaccination in hepatitis E prevention worldwide.

Box 2. Hepatitis B and hepatitis D

  • Modes of transmission for hepatitis B include mother-to-child transmission at birth, sexual contact, the transfusion of infected blood products, the use of contaminated needles in health care settings, and the sharing of injection equipment among people who inject drugs.
  • A safe and highly effective hepatitis B vaccine became available in 1982. It has been introduced in infant immunisation programmes in more than 180 countries, but coverage is uneven. The World Health Organization estimates that 79% of infants born in 2012 received the recommended three doses of hepatitis B vaccine.16
  • There is no cure for chronic hepatitis B. Infants and children are much more likely to develop chronic hepatitis B than are people who become infected in adulthood.
  • Chronic hepatitis B may be asymptomatic for years or even decades while causing extensive liver damage. Cirrhosis and liver cancer are both serious long-term outcomes.
  • According to one published source, up to 40 percent of people who acquire hepatitis B neonatally will eventually develop liver cancer.17 Chronic hepatitis B is the leading cause of liver cancer, which in turn is the second most common cause of cancer death.18,19
  • According to the World Health Organization, 240 million people worldwide have chronic hepatitis B.20 Another source puts this figure at 350 million.21
  • Global Burden of Disease estimates indicate that hepatitis B caused 786,000 deaths in 2010: 17% from acute infection, 40% from cirrhosis and 43% from liver cancer.22 Another source concluded that mortality may be somewhat lower, with an estimated 235,000 deaths annually caused by cirrhosis secondary to hepatitis B and 328,000 deaths annually caused by liver cancer secondary to hepatitis B.23
  • Between 15 and 20 million people may be co-infected with hepatitis B and hepatitis D, but the reliability of these estimates is uncertain.24
  • Co-infection with hepatitis D appears to put people who have hepatitis B at considerably higher risk of cirrhosis, liver cancer and death.25,26,27

Box 3. Hepatitis C

  • Hepatitis C disease was known as “non-A, non-B hepatitis” for more than a decade after it was first recognised in the 1970s. The hepatitis C virus was not definitively identified until 1989.
  • Hepatitis C is transmitted primarily through exposure to infected blood. In resource-limited countries, exposure frequently occurs in health care settings, e.g. as a result of unsafe injection practices or insufficient screening of blood products. In high-income countries, the use of contaminated injecting equipment by people who inject drugs is a major transmission pathway. Other routes of transmission include tattooing, sexual contact involving blood, and mother-to-child transmission at birth.
  • No vaccine exists for hepatitis C, nor is one likely to be developed in the near future.
  • In 15 to 45 percent of people who acquire hepatitis C, the virus will be cleared by the body within six months of infection; these people are cured without any treatment.28 For everyone else, infection with the hepatitis C virus becomes a chronic condition. People with chronic hepatitis C are at high risk of developing cirrhosis and liver cancer.
  • Antiviral treatment can cure chronic hepatitis C, but not everyone is responsive to the treatment regimens that are currently available. The newest regimens are associated with the highest cure rates, but access to these regimens is limited in many countries.
  • According to the World Health Organization, between 130 million and 150 million people are chronically infected with hepatitis C.29
  • Global Burden of Disease estimates indicate that hepatitis C caused 499,000 deaths in 2010: 3% from acute infection, 58% from cirrhosis and 39% from liver cancer.30 Another source calculated somewhat lower mortality levels, concluding that 366,000 deaths annually are caused by either cirrhosis or liver cancer secondary to hepatitis C.31

1.3. How must governments and the international community improve their response?

An essential foundation for an effective global response to viral hepatitis is a national hepatitis strategy in every country – no country can consider itself to not be affected in one way or another by viral hepatitis. The 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States indicated that fewer than 40% of the 126 governments that submitted information appear to have such a strategy. A follow-up questionnaire by the WHO Global Hepatitis Programme suggested that in fact just 17 have comprehensive strategies.32

It is imperative to remedy this situation as quickly as possible, and the World Health Organization has a vital role to play in helping governments develop comprehensive national strategies. There is also much work to be done to improve the implementation of existing national strategies, as reflected in the observations of some of the civil society organisations contributing to this report.

Efforts at the national and subnational level must be tailored to address the diverse vaccination, awareness, prevention, screening and treatment needs of people in different settings. International actors can play an important role in this regard by providing government and civil society stakeholders with tools and resources that can be adapted to fit a wide range of epidemiological and social situations.

Only by measuring progress – or the lack thereof – can governments and the international community make informed decisions about how to allocate limited resources. Monitoring and reporting activities need to be greatly expanded and strengthened in many countries. Furthermore, monitoring and reporting need to be systematised globally, with all countries collecting data in accordance with the same indicators of the hepatitis disease burden as well as indicators of progress toward prevention and treatment goals.

Another key to improving the response to viral hepatitis is to integrate the expertise of civil society organisations into government initiatives. Governments should seek to foster strong government and civil society coalitions that include not only patient groups and activists, but also other civil society actors such as foundations, medical societies, academic institutions, the private sector, and nongovernmental organisations (NGOs) working in the field of hepatitis. It is important to reach out to civil society actors with synergistic interests. Depending on the setting, this might include, for example, antenatal care clinics, advocacy groups working to protect the interests of people who inject drugs, or HIV service providers with large caseloads of patients who are coinfected with HIV and hepatitis.

1.4. Why is civil society involvement so important?

In recent decades, civil society actors have made invaluable contributions to the global response to public health issues such as reproductive health, HIV and cancer. In some ways, they have even helped to shape fundamental public health paradigms. Involvement of such a nature is our only hope for overcoming the immense barriers to viral hepatitis prevention and control.

There are at least six major reasons for why governments need strong civil society partners to help them address hepatitis:

  1. Members of civil society can raise awareness about viral hepatitis, and in some situations can do so more effectively than government agencies.
  2. Members of civil society can offset resource limitations by contributing lay and professional health resources.
  3. Members of civil society can draw on firsthand knowledge of community dynamics to share strategic insights about what types of hepatitis interventions are likely to be the most successful.
  4. Members of civil society are ideally positioned to monitor and challenge hepatitis-related stigma as it manifests in various health care and community settings.
  5. Members of civil society have opportunities to develop trusting relationships with marginalised groups that may not respond to government-driven hepatitis control efforts. These groups include immigrants, indigenous people, prisoners and people who inject drugs.
  6. Members of civil society can carry out advocacy among government actors and the general public to win support for measures that government health officials would otherwise be unable to implement successfully.

Within the civil society realm, the special role of hepatitis patient groups needs to be recognised. The World Hepatitis Alliance brings together 181 patient groups based in 69 countries. Time and again, patient groups have demonstrated that they are uniquely qualified to propose and help implement solutions to problems facing viral hepatitis patients and those who are at high risk of infection.

Patient groups often have detailed knowledge of patients’ needs, along with experience providing peer education and other essential services. They are eager to share their expertise by partnering with governments and other stakeholders at the community, provincial and national levels. Patient groups furthermore can serve as a conduit for bringing the insights and priorities of the most affected populations – including marginalised populations – into the dialogue about how governments and international actors should be addressing hepatitis.

From a pragmatic standpoint, it is smart for governments and other key stakeholders to welcome the involvement and advocacy efforts of hepatitis patient groups and their allies. From a human rights standpoint, giving the members of these groups a voice in the policy discourse recognises their right to participate in decision-making about the health issues that affect them, which is a component of the right to health (Box 4).

Box 4. United Nations Committee on Economic, Social and Cultural Rights, General Comment 14, the Right to the Highest Attainable Standard of Health

 

... The Committee interprets the right to health, as defined in article 12.1, as an inclusive right extending not only to timely and appropriate health care but also to the underlying determinants of health, such as access to safe and potable water and adequate sanitation, an adequate supply of safe food, nutrition and housing, healthy occupational and environmental conditions, and access to health-related education and information, including on sexual and reproductive health. A further important aspect is the participation of the population in all health-related decision-making at the community, national and international levels[emphasis added].33

1.5. What are the next steps in charting the course for a unified global response?

The World Hepatitis Alliance seeks to ensure that a unified global response to viral hepatitis is manifested in the comprehensive national strategies that all countries are being encouraged to develop in a timely manner. A solid strategic foundation exists upon which all countries can build. The components of this foundation are put forth in World Health Assembly resolutions WHA 63.18 and WHA 67.6 and in the WHO viral hepatitis strategic framework.34,35,36

As the resolutions and strategic framework reflect, we already know what to do in many regards in order to prevent new infections and to reduce suffering and death from viral hepatitis. Indeed, the section of resolution WHA 67.6 that is directed at governments itemises 16 key actions that could potentially have an enormous impact on hepatitis prevention and treatment (Box 5). The challenge is to apply this knowledge – which in many parts of the world will involve overcoming formidable barriers relating to complacency, ignorance, stigma and resource limitations.

In light of these barriers, the World Hepatitis Alliance believes that building a unified global response to hepatitis is fundamentally about building relationships between stakeholders at all levels – globally, nationally and locally. Some World Hepatitis Alliance member organisations have set notable precedents in this regard by establishing a dialogue with governmental decision-makers in their countries and communities. Some of these organisations are even participating in formal processes to develop hepatitis policies, guidelines and programmes. These efforts need to continue, and in countries where civil society actors are not providing input, political and public health leaders need to do more to foster civil society engagement.

It is hoped that WHO, through its global headquarters and its regional and country offices, will serve as an important facilitator of relationships between government and civil society representatives. WHO can also contribute to a unified global response to viral hepatitis by issuing much-needed policy and technical guidance (Box 6). Just as importantly, WHO should seek greater civil society involvement in the deliberations that shape its viral hepatitis agenda.

Activities such as the March 2014 “global partners meeting” convened by the WHO Global Hepatitis Programme show great promise. More than 100 civil society representatives from around the world participated in this two-day event in Geneva. Meeting attendees identified new opportunities for collaboration between WHO and civil society partners, and the Call to Action to Scale Up Global Hepatitis Response resulting from the meeting articulates a number of civil society priorities in relation to prevention, treatment, advocacy and evidence-informed decision-making.37

Finally, an important consideration for all stakeholders responding to viral hepatitis is the composition of “civil society.” It is not enough to welcome and encourage the most visible civil society actors in the hepatitis policy discourse. Who is not being represented? And why?

The World Hepatitis Alliance is especially mindful of these questions in light of findings presented in this very report. The survey that provides the basis for the report was e-mailed to approximately 800 civil society organisations, with at least one organisation approached in virtually every country of the world. (It was also distributed in other ways – see Annex A for information about the methodology.) Yet in spite of extensive outreach to encourage the submission of surveys, the report only contains responses from 95 organisations representing fewer than 60 countries. Forty-one percent of the surveys are from organisations based in high-income countries, and 42% are from organisations based in the European region.

One can only speculate about reasons for the lack of a response to the survey in many countries, but it is not difficult to see how resource limitations might have played a role. Most notably, the World Hepatitis Alliance did not have sufficient funding to conduct the survey in any language other than English. It would be unrealistic to expect many civil society organisations in countries where English is not widely spoken to have the means to report on the governmental response to hepatitis via an English-language survey. Even in low- and middle-income countries where language was not a barrier to responding to the survey, a lack of staff or volunteer capacity may have discouraged engagement among some organisations.

While these observations suggest a possible limitation of the report findings, they are put forth here in order to call attention to a larger concern. Do patient groups and other civil society organisations in countries heavily affected by viral hepatitis have the means to participate in global civil society? For that matter, do they have the means to engage with their own governments? What resources might they need? And what of countries that appear to have only sporadic or no civil society activity relating to viral hepatitis? How can the voices of the people most affected by viral hepatitis be brought into the discourse in these countries?

The World Hepatitis Alliance encourages all readers to be attentive to these questions as they consider the report’s findings and as they continue to work toward key viral hepatitis goals. It is anticipated that some readers will disagree with some of the information provided, just as civil society organisations have indicated in survey responses that they disagree with some of the information provided by governments for the 2013 WHO report. Disagreements are potentially important opportunities for relationship-building. Ideally they will provide an impetus for key actors in the response to hepatitis to critically examine the available evidence, reflect on their assumptions, consider other points of view, and affirm shared goals.

By challenging each other within the context of a respectful dialogue, government and civil society partners have the potential to forge a new type of partnership globally. Establishing a partnership that encourages the full participation of diverse actors is of paramount importance because the response to viral hepatitis must take into account many different types of public health and development issues. Safe water and sanitation, prenatal care, infant immunisation, adherence to universal precautions in health care facilities, the societal response to illegal drug use, health care standards for incarcerated populations, stigma and discrimination, changing immigration and travel patterns, the pricing of pharmaceutical products ... these are only some of the issues that come into play. All voices need to be heard if the global community is to make real progress on viral hepatitis, one of the most complex health threats of the twenty-first century.

Box 5. World Health Assembly resolution WHA 67.6

The following text is excerpted from World Health Assembly resolution WHA 67.6, the full text of which appears in Annex D. This resolution, approved in May 2014, calls on World Health Organization Member States to38:

  1. ... develop and implement coordinated multisectoral national strategies for preventing, diagnosing, and treating viral hepatitis based on the local epidemiological context;
  2. ... enhance actions related to health promotion and prevention of viral hepatitis, while stimulating and strengthening immunisation strategies, including for hepatitis A, based on the local epidemiological context;
  3. ... promote the involvement of civil society in all aspects of preventing, diagnosing and treating viral hepatitis;
  4. ... put in place an adequate surveillance system for viral hepatitis in order to support decision-making on evidence-based policy;
  5. ... strengthen the system for collection of blood from low-risk, voluntary, non-remunerated donors, for quality-assured screening of all donated blood to avoid transmission of HIV, hepatitis B, hepatitis C and syphilis, and for good transfusion practices to ensure patient safety;
  6. ... strengthen the system for quality-assured screening of all donors of tissues and organs to avoid transmission of HIV, hepatitis B, hepatitis C and syphilis;
  7. ... reduce the prevalence of chronic hepatitis B infection as proposed by WHO regional committees, in particular by enhancing efforts to prevent perinatal transmission through the delivery of the birth dose of hepatitis B vaccine;
  8. ... strengthen measures for the prevention of hepatitis A and E, in particular the promotion of food and drinking water safety and hygiene;
  9. ... strengthen infection control in health care settings through all necessary measures to prevent the reuse of equipment designed only for single use, and cleaning and either high-level disinfection or sterilization, as appropriate, of multi-use equipment;
  10. ... include hepatitis B vaccine for infants, where appropriate, in national immunisation programmes, working towards full coverage;
  11. ... make special provision in policies for equitable access to prevention, diagnosis and treatment for populations affected by viral hepatitis, particularly indigenous people, migrants and vulnerable groups, where applicable;
  12. ... consider, as necessary, national legislative mechanisms for the use of the flexibilities contained in the Agreement on Trade-Related Aspects of Intellectual Property Rights in order to promote access to specific pharmaceutical products;
  13. ... consider, whenever necessary, the use of administrative and legal means in order to promote access to preventive, diagnostic and treatment technologies against viral hepatitis;
  14. ... implement comprehensive hepatitis prevention, diagnosis and treatment programmes for people who inject drugs, including the nine core interventions,39 as appropriate, in line with the WHO, UNODC, UNAIDS technical guide for countries to set targets for universal access to HIV prevention, treatment and care for injecting drug users,40 and in line with the global health sector strategy on HIV/AIDS, 2011–2015, and the United Nations General Assembly resolution 65/277, taking into account the domestic context, legislation and jurisdictional responsibilities;
  15. ... aim to transition by 2017 to the exclusive use, where appropriate, of WHO prequalified or equivalent safety-engineered injection devices including reuse-prevention syringes and sharp injury prevention devices for therapeutic injections and develop related national policies;
  16. ... review, as appropriate, policies, procedures and practices associated with stigmatization and discrimination, including the denial of employment, training and education, as well as travel restrictions, against people living with and affected by viral hepatitis, or impairing their full enjoyment of the highest attainable standard of health.

Box 6. Recent and forthcoming guidance from the World Health Organization


  1. World Health Organization. Sixty-third World Health Assembly. Viral Hepatitis: WHA 63.18. Geneva, Switzerland, 21 May 2010. Available at: http://apps.who.int/gb/ebwha/pdf_files/WHA63-REC1/WHA63_REC1-P2-en.pdf.
  2. World Health Organization. Sixty-seventh World Health Assembly. Agenda Item 12.3: WHA67.6 Hepatitis. Geneva, Switzerland, 24 May 2014. Available at: http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R6-en.pdf.
  3. World Health Organization. Prevention and control of viral hepatitis infection: framework for global action. Geneva, Switzerland, 2012. Available at: http://www.who.int/csr/disease/hepatitis/GHP_Framework_En.pdf?ua=1.
  4. Chung RT, Baumert TF. Curing Chronic Hepatitis C – The Arc of a Medical Triumph. New England Journal of Medicine, 2014; 370:1576-1578.
  5. World Health Organization. Sixty-third World Health Assembly. Viral Hepatitis: WHA 63.18. Geneva, Switzerland, 21 May 2010. Available at: http://apps.who.int/gb/ebwha/pdf_files/WHA63-REC1/WHA63_REC1-P2-en.pdf.
  6. World Health Organization. Sixty-seventh World Health Assembly. Agenda Item 12.3: WHA67.6 Hepatitis. Geneva, Switzerland, 24 May 2014. Available at: http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R6-en.pdf.
  7. World Health Organization. Hepatitis A. Fact Sheet N. 328. Geneva, Switzerland, 2013. Available at: http://www.who.int/mediacentre/factsheets/fs328/en/.
  8. World Health Organization. Hepatitis E. Fact Sheet N. 280. Geneva, Switzerland, 2013. Available at: http://www.who.int/mediacentre/factsheets/fs280/en/.
  9. World Health Organization. Hepatitis B. Fact Sheet N. 204. Geneva, Switzerland, 2013. Available at: http://www.who.int/mediacentre/factsheets/fs204/en/.
  10. World Health Organization, Department of Communicable Disease Surveillance and Response. Hepatitis Delta. Geneva, Switzerland, 2001. Available at: http://www.who.int/csr/disease/hepatitis/whocdscsrncs20011/en/.
  11. World Health Organization. Hepatitis C. Fact Sheet N. 164. Geneva, Switzerland, 2014. Available at: http://www.who.int/mediacentre/factsheets/fs164/en/.
  12. World Health Organization. Prevention and control of viral hepatitis infection: framework for global action. Geneva, Switzerland, 2012. Available at: http://www.who.int/csr/disease/hepatitis/GHP_Framework_En.pdf?ua=1.
  13. Lozano R et al. Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet, 2012, 380(9859):2095-2128.
  14. Rein DB et al. The global burden of hepatitis E virus genotypes 1 and 2 in 2005. Hepatology, 2012, 55:988-997.
  15. Lozano R et al. Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet, 2012, 380(9859):2095-2128.
  16. World Health Organization. Global immunization data, February 2014. Geneva, Switzerland, 2014. Available at: http://www.who.int/immunization/monitoring_surveillance/Global_Immunization_Data.pdf?ua=1.
  17. Chu CM et al. Natural history of chronic hepatitis B virus infection in adults with emphasis on the occurrence of cirrhosis and hepatocellular carcinoma. Journal of Gastroenterology and Hepatology 2000; 15:25-30.
  18. Kew MC. Epidemiology of chronic hepatitis B virus infection, hepatocellular carcinoma, and hepatitis B virus-induced hepatocellular carcinoma. Pathologie Biologie 2010; 58:273-277.
  19. Stewart B, Wild C. World Cancer Report 2014. IARC, France 2014.
  20. World Health Organization. Prevention and control of viral hepatitis infection: framework for global action. Geneva, Switzerland, 2012. Available at: http://www.who.int/csr/disease/hepatitis/GHP_Framework_En.pdf?ua=1.
  21. Te HS, Jensen DM. Epidemiology of hepatitis B and C viruses: a global overview. Clinics in Liver Disease 2010; 14:1-21.
  22. Lozano R et al. Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet, 2012, 380(9859):2095-2128.
  23. Perz JF et al. The contributions of hepatitis B virus and hepatitis C virus infections to cirrhosis and primary liver cancer worldwide. Journal of Hepatology 2006; 45:529-38.
  24. Pascarella S, Negro F. Hepatitis D virus: an update. Liver International 2011; 31:7-21.
  25. Fattovich G et al. Influence of hepatitis delta virus infection on morbidity and mortality in compensated cirrhosis type B. The European Concerted Action on Viral Hepatitis (EuroHep). Gut 2000; 46:420-426.
  26. Cross TJ et al. The increasing prevalence of hepatitis delta virus (HDV) infection in South London. Journal of Medical Virology 2008; 80:277-282.
  27. Tamura I et al. Risk of liver cirrhosis and hepatocellular carcinoma in subjects with hepatitis B and delta virus infection: a study from Kure, Japan. Journal of Gastroenterology and Hepatology 1993; 8:433-436 .
  28. World Health Organization. Guidelines for the screening, care and treatment of persons with hepatitis C infection. Geneva, Switzerland, 2014. Available at: http://apps.who.int/iris/bitstream/10665/111747/1/9789241548755_eng.pdf?ua=1&ua=1.
  29. World Health Organization. Hepatitis C. Fact Sheet N. 164.  Geneva, Switzerland, 2014. Available at: http://www.who.int/mediacentre/factsheets/fs164/en/.
  30. Lozano R et al. Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet, 2012, 380(9859):2095-2128.
  31. Perz JF et al. The contributions of hepatitis B virus and hepatitis C virus infections to cirrhosis and primary liver cancer worldwide. Journal of Hepatology 2006; 45:529-38.
  32. Personal communication, Hande Harmanci (WHO) to Charles Gore (World Hepatitis Alliance), 24 March 2014.
  33. United Nations Committee on Economic, Social and Cultural Rights. General Comment 14, The Right to the Highest Attainable Standard of Health. E/C.12/2000/4. 2000. Available at: http://tbinternet.ohchr.org/_layouts/treatybodyexternal/Download.aspx?symbolno=E%2fC.12%2f2000%2f4&Lang=en.
  34. World Health Organization. Sixty-third World Health Assembly. Viral Hepatitis: WHA 63.18. Geneva, Switzerland, 21 May 2010. Available at: http://apps.who.int/gb/ebwha/pdf_files/WHA63-REC1/WHA63_REC1-P2-en.pdf.
  35. World Health Organization. Sixty-seventh World Health Assembly. Agenda Item 12.3: WHA67.6 Hepatitis. Geneva, Switzerland, 24 May 2014. Available at: http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R6-en.pdf.
  36. World Health Organization. Prevention and control of viral hepatitis infection: framework for global action. Geneva, Switzerland, 2012. Available at: http://www.who.int/csr/disease/hepatitis/GHP_Framework_En.pdf?ua=1.
  37. World Health Organization. Call to Action to Scale Up Global Hepatitis Response. Global Partners’ Meeting on Hepatitis, March 2014, Geneva, Switzerland.
  38. World Health Organization. Sixty-seventh World Health Assembly. Agenda Item 12.3: WHA67.6 Hepatitis. Geneva, Switzerland, 24 May 2014. Available at: http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R6-en.pdf.
  39. Needle and syringe programmes; opioid substitution therapy and other drug dependence treatment; HIV testing and counselling; antiretroviral therapy; prevention and treatment of sexually transmitted infections; condom programmes for people who inject drugs and their sexual partners; targeted information, education and communication for people who inject drugs and their sexual partners; vaccination, diagnosis and treatment of viral hepatitis; prevention, diagnosis and treatment of tuberculosis. 
  40. WHO, UNODC, UNAIDS technical guide for countries to set targets for universal access to HIV prevention, treatment and care for injecting drug users. Geneva: World Health Organization; 2009.