Civil Society - Global findings

Global Hepatitis Priorities: Five Key Issues Raised by Civil Society Survey Findings

In this chapter, the World Hepatitis Alliance offers insights about how some of the most notable findings from the 2014 survey of civil society stakeholders should inform the global response to viral hepatitis.

For the survey, 76 civil society organisations reviewed a total of 25 items of information reported by their governments for the 2013 World Health Organization (WHO) Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. Regarding each item, civil society respondents indicated whether they thought the government reporting was accurate or inaccurate. (They could also choose to take no position.) These civil society organisations represented 46 countries. A quantitative analysis of responses to the 25 items provided the basis for part of the findings presented in this report. Other findings are drawn from qualitative data, which were collected from the 76 civil society organisations and from 19 additional civil society organisations in countries where government information was not available. (Details can be found in Chapters 3–9 and in Annex A.)

The World Hepatitis Alliance recommends that governments put in place robust monitoring mechanisms so that they are fully informed of viral hepatitis activities and key performance indicators nationally.

2.1. Disagreement between governments and civil society organisations

There appears to be considerable disagreement between governments and civil society organisations about some aspects of how national responses to viral hepatitis are being managed.

What does the evidence indicate?
Approximately half of 76 civil society respondents thought that their governments had reported inaccurate information for at least five of 25 survey items, as described in Chapter 3. Some of the most common areas of disagreement included the existence of government hepatitis programmes targeting specific populations; hepatitis surveillance; and disease registration and reporting. For example, 33% of survey respondents indicated that they thought their governments had provided inaccurate information in response to the following 2013 question to governments: Does your government have a viral hepatitis prevention and control programme that includes activities targeting specific populations? If yes, please indicate which populations.

Why is the World Hepatitis Alliance concerned?
Comments provided by civil society survey respondents suggest more than one possible explanation for why some government information was characterised as inaccurate – but most explanations present cause for concern. At best, it appears that some instances of disagreement might be attributable to civil society respondents recognising improvements that occurred after governments reported to WHO, because the government data were collected between July 2012 and February 2013 while the civil society data were collected approximately one year later. In other cases, one can speculate that inadequate communication between government and civil society stakeholders might have left civil society survey respondents misinformed about government policies and programmes. It is also conceivable that in relation to some reporting topics, government and civil society representatives might characterise the viral hepatitis situation in their country differently because they interpret key concepts differently. Finally, in some cases the explanation could simply be that governments did indeed provide inaccurate information to WHO in 2013.

Regardless of how specific instances of disagreement came about, the quantitative and qualitative findings taken together suggest the overall conclusion that civil society does not appear to be properly engaged with national governments in a number of countries. This effort to assess the level of disagreement only takes into account data from the 46 countries where governments reported to WHO in 2013 and civil society organisations reported to the World Hepatitis Alliance in 2014. In many other countries, it was not possible to analyse civil society perspectives on what governments claim to be doing in response to hepatitis. Thus, the disconnect between government and civil society might actually be much more extensive worldwide.

Disagreement between governments and civil society organisations regarding how viral hepatitis is being handled at the national level seems likely to be a symptom of insufficient civil society engagement, which is the focus of the next section.

What is the way forward?
The World Hepatitis Alliance recommends that governments put in place robust monitoring mechanisms so that they are fully informed of viral hepatitis activities and key performance indicators nationally. Governments should ensure that the information they collect is widely disseminated, especially to civil society. There is also an obvious need for governments to engage more directly with civil society.

2.2. Civil society engagement

Much needs to change in order for civil society stakeholders to become full partners in the response to viral hepatitis in many countries.

What does the evidence indicate?
In 2013, the governments of 60 countries reported to WHO that they collaborated with in-country civil society groups to develop and implement viral hepatitis prevention and control programmes.1 In ten of those countries, one or more civil society respondents indicated that to their knowledge, the government information was not accurate, as reported in Annex C. In other words, the civil society survey findings raise the question of whether the number of governments collaborating with civil society might be considerably lower.

Why is the World Hepatitis Alliance concerned?
Tremendous improvements are needed at the national and community level in relation to many aspects of viral hepatitis prevention and control. It is difficult to imagine those improvements occurring without strong partnerships between government and civil society in all countries affected by viral hepatitis. As discussed in Chapter 1, civil society has the potential to make unique and valuable contributions. Furthermore, it is the right of civil society participants to have a voice in the decisionmaking processes that determine government hepatitis strategies, policies and programmes.

2.3. The existence of written national strategies for viral hepatitis

Information from civil society organisations reinforces the World Hepatitis Alliance’s concern that many countries lack the necessary strategic foundation for a comprehensive response to viral hepatitis.

What does the evidence indicate?
In 2013, 37% of 126 reporting governments indicated to WHO that their countries had written national strategies or plans that focused exclusively or primarily on the prevention and control of viral hepatitis.2 The 2014 civil society survey asked respondents whether or not they thought this information was accurate. Sixty civil society respondents (79%) indicated that to their knowledge, the 2013 government information was accurate, as reported in
Chapter 3 and Annex C. Therefore, it is possible that even less than 37% of governments have written national strategies or plans for viral hepatitis. When the WHO Global Hepatitis Programme asked about this issue in a questionnaire, responses indicated that there were comprehensive strategies in only 17 countries.3

Why is the World Hepatitis Alliance concerned?
In light of the burden of disease from viral hepatitis, it is flatly unacceptable for governments to not have strategies
or plans in place to guide national responses. This has been recognised by the World Health Assembly: the very first clause of the viral hepatitis resolution approved by this body in May 2014 urges WHO Member States “to develop and implement coordinated multisectoral national strategies for preventing, diagnosing, and treating viral hepatitis based on the local epidemiological context.”4

Calls for national viral hepatitis strategies may be met with resistance in some quarters because of concerns about the drawbacks of vertical disease programming. Such concerns are valid, and it is important to clarify that the creation and implementation of a national viral hepatitis strategy are not envisioned as activities that should take place apart from the rest of the national public health agenda. Indeed, integrating the hepatitis response with other components of the public health agenda is highly advisable. At the same time, national strategies specifically addressing viral hepatitis are necessary in order to remedy the greatly inadequate response to this group of  diseases to date. The existence of national strategies can promote accountability, especially when strong  monitoring mechanisms are employed.

The World Hepatitis Alliance urges the global community to recognise that a functional national viral hepatitis strategy is something more than words in a document. Civil society survey responses from Austria and Mongolia are instructive in this regard. In 2013, the governments of both countries reported to WHO that written national viral hepatitis strategies or plans existed in their countries. However, in a civil society survey submission, a representative of the Austrian Society of Gastroenterology and Hepatology commented about the government claim:

This is probably accurate, but it is not widely known. Even I myself as a citizen of Austria working in the field for years have never seen this strategy/plan nor has it ever been communicated openly.

A civil society survey from Mongolia’s Onom Foundation commented regarding the same point:

It all exists on paper but not a lot of actions are happening. Hepatitis B vaccination is the one part being done quite well. Other points do not have enough funding and there are not real orchestrated efforts that we can see.

As these statements reflect, simply drafting a national strategy is far from sufficient. Strategies must incorporate costed implementation plans. Also, progress must be tracked throughout implementation using clearly defined metrics. Progress or the lack thereof must be shared with all concerned stakeholders.

What is the way forward?
The World Hepatitis Alliance recommends that governments make use of technical support from WHO and other bodies, including the Alliance, to begin at once the development of comprehensive multisectoral national viral hepatitis strategies. Funding for a strategy needs to be secured early, and proper accountability and monitoring established. Any strategy needs to make full use of existing resources such as those provided by HIV
or cancer programmes and also needs to be integrated into other public health strategies. At the same time, it is imperative that even when viral hepatitis strategies are implemented in a fully integrated manner, outcomes related solely to hepatitis should be monitored in order to gauge progress on national and global viral hepatitis goals and targets.

A functional national viral hepatitis strategy is something more than words in a document.

2.4. Surveillance

Surveillance is an absolutely essential tool for understanding the burden of disease and planning an effective strategic response to all forms of viral hepatitis.

What does the evidence indicate?
In 2013, the governments of 104 countries reported to WHO that they had routine surveillance for viral hepatitis.5 In 19 of those countries, one or more civil society respondents indicated that to their knowledge, the government information was not accurate, as reported in Chapter 3 and Annex C.

There are also instances of civil society survey respondents agreeing with government reports that routine hepatitis surveillance exists, while adding comments regarding surveillance limitations. For example, the German Liver Foundation noted, “No differentiation between acute and chronic hepatitis C.” Associazione EpaC in Italy wrote, “There is a registry for acute hepatitis, but not all local health district departments adhere to this system.” The Hiroshima University Institute of Biomedical and Health Sciences in Japan reported, “Although we have a national surveillance system for viral hepatitis, the rate of reporting from medical doctors for acute hepatitis cases is insufficient. Government should have a policy for raising awareness among all medical doctors regarding the importance of surveillance.”

Why is the World Hepatitis Alliance concerned?
Without knowing the national disease burden or transmission patterns, it is impossible for governments to make informed decisions about how to allocate resources for hepatitis prevention and treatment. It is also impossible to tailor hepatitis control strategies to the segments of the population that are most at risk. The ramifications of a country having poor viral hepatitis surveillance extend beyond that specific country. The net effect of widespread surveillance shortcomings is the undermining of strategic efforts at the regional and global level.

The viral hepatitis surveillance issues documented in the 2014 civil society survey findings are not surprising.

Regarding hepatitis C, a 2013 review article commented that “despite increasing morbidity and mortality ... surveillance is incomplete, out of date and in some countries non-existent.”6 World Health Assembly resolution WHA 67.6, approved in May 2014, notes that “most” of the 194 Member States of the World Health Organization “lack adequate surveillance systems for viral hepatitis to enable them to take evidence-based policy decisions.”7 In the resolution, one of the 16 measures that Member States are urged to take is putting in place adequate surveillance (Box 5, p13).

What is the way forward?
The World Hepatitis Alliance recommends that all countries have functional hepatitis surveillance systems. Countries with systems already in place are advised to introduce enhanced surveillance of the hepatitis B and hepatitis C viruses, such as the European Centre for Disease Prevention and Control began implementing in 2010.8 Enhanced hepatitis B and hepatitis C surveillance should include the reporting of acute and chronic cases. Furthermore,
standardized case definitions, including a definition for late presentation, are needed. The current dearth of surveillance and the heterogenieity in existing surveillance systems, coupled with varying national case definitions of hepatitis, severely hinders efforts to interpret data.

2.5. Viral hepatitis prevention

Qualitative data from a large number of civil society survey respondents call attention to the significance of viral hepatitis prevention activities worldwide and the need to intensify these efforts.

What does the evidence indicate?
Multiple aspects of viral hepatitis prevention were highlighted in statements from civil society survey respondents. Some examples:

  • The hepatitis B vaccine is available in most hospitals, although the accessibility and availability of this vaccine in the rural areas is poor. Another challenge is the vaccination schedule (0, 1, 6), which makes follow-up difficult for clients. There is a general lack of knowledge about mother-to-child transmission of hepatitis B and its prevention among care providers.
    — Comfort Foundation, Ghana
  • There is no government protocol, guideline or standard operating procedure on prevention of hepatitis  transmission for any target population. Even health workers with all the risks and job hazards are not protected by any government policy on post-exposure prophylaxis.
    — Chagro-Care Trust and Elohim Foundation, Nigeria
  • There are many small blood banks selling blood which has never been screened. Only reputable labs screen blood for both hepatitis B and hepatitis C.
    — The Health Foundation, Pakistan
  • The highest-incidence groups for hepatitis C in Germany are drug users and men who have sex with men. But no prevention programmes are established for either... Also, there are no specific hepatitis B programmes for migrants coming from highly endemic countries.
    — Deutsche Leberhilfe e.V., Germany
  • Harm reduction programmes must not only be sustained, but urgently scaled up and expanded to provide adequate coverage and a wide range of services including needle and syringe programmes.
    — Union C, Nepal
  • The Department of Health has a free hepatitis B vaccine programme for infants [birth to age one]. But since the Philippines is an archipelago, bringing vaccine to far-flung provinces poses a challenge. We can see this because of the increase in the prevalence of hepatitis B. We believe strict implementation and monitoring would solve this problem.
    — Yellow Warriors Society, Philippines

 

Why is the World Hepatitis Alliance concerned?
Given the global prevalence of viral hepatitis and the lack of awareness about the nature of the threat, the World Hepatitis Alliance is extremely concerned about the limited scope of most types of hepatitis prevention efforts. Recent excitement about a new hepatitis C treatment with high cure rates should not draw attention away from the imperative to prevent this disease.

Nor should “treatment as prevention” seduce the global community into diverting meagre viral hepatitis prevention
resources to the provision of overly expensive hepatitis C drugs.

At the same time, the Alliance cautions against basing policy decisions and resource allocation decisions on an unhelpful “prevention versus treatment” paradigm. Ultimately what matters more than providing access to any specific viral hepatitis prevention or treatment intervention is making systemic improvements that will give public health officials and civil society partners flexibility in how they address viral hepatitis on an ongoing basis. All stakeholders must have access to the necessary data and resources to make informed decisions about how to
respond in a coordinated manner to changing disease patterns and how to apply new knowledge strategically.

What is the way forward?
The World Hepatitis Alliance recommends that all governments issue evidence-based guidance on hepatitis prevention and that they share this guidance with all stakeholders. In the absence of national guidance, global guidance from the World Health Organization should be utilised. Depending on a country’s epidemiological context,
the following may be considered viral hepatitis prevention priorities:

  • Including hepatitis B vaccine in national immunisation programmes, including provision of a birth dose.
  • Recommending hepatitis B vaccination to travelers to regions with high hepatitis B prevalence.
  • Promoting and enabling safe injection practices in health care settings.
  • Conducting campaigns to reduce the number of unnecessary injections.
  • Improving the safety of blood and blood products.
  • Implementing harm reduction interventions for people who inject drugs.

Efforts also must recognise the barriers that deter members of most-at-risk populations from accessing prevention and treatment services and commodities, and must include provisions for overcoming the barriers. This could mean, for example, educating people in rural communities about the importance of vaccination, or ensuring equitable access to treatment for people who inject drugs.

2.6. Recommendations

The World Hepatitis Alliance urges all stakeholders in the response to viral hepatitis to take note of the findings from its 2014 survey of civil society stakeholders. The Alliance makes the following recommendations based on its analysis of survey findings and other evidence:

  • Establish robust monitoring mechanisms to track viral hepatitis activities and key performance indicators nationally. Monitoring outputs should be widely disseminated, and special efforts should be made to share information with civil society stakeholders.
  • Introduce or improve national viral hepatitis surveillance systems.
  • Engage more directly with civil society, including hepatitis patient groups. Help foster the creation of new  hepatitis groups, including patient groups and other groups, where none exist.
  • Develop comprehensive multisectoral national viral hepatitis strategies, drawing on WHO, the World Hepatitis Alliance and others for technical support. Sufficient funding must be allocated to implement the strategies.
  • Integrate the implementation of national viral hepatitis strategies with national public health agendas, while at the same time monitoring specific hepatitis-related outcomes.
  • Issue evidence-based guidance on hepatitis prevention and share this guidance with all stakeholders.
  • Establish consensus about which aspects of viral hepatitis prevention should be prioritised based on the national epidemiological context.
  • Recognise and seek to overcome barriers that deter members of most-at-risk populations from accessing hepatitis prevention and treatment services and commodities.
  • Ensure access to hepatitis prevention and treatment for everyone in need without discrimination.

Chapter 2 References

  1. World Health Organization. Global policy report on the prevention and control of viral hepatitis in WHO member states. Geneva, Switzerland, 2013. http://www.who.int/csr/disease/hepatitis/global_report/en/.
  2. World Health Organization. Global policy report on the prevention and control of viral hepatitis in WHO member states. Geneva, Switzerland, 2013. http://www.who.int/csr/disease/hepatitis/global_report/en/.
  3. Personal communication, Hande Harmanci to Charles Gore, 24 March 2014.
  4. World Health Organization. Sixty-seventh World Health Assembly. Agenda Item 12.3: WHA 67.6 Hepatitis. Geneva, Switzerland, 24 May 2014. Available at: http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R6-en.pdf.
  5. World Health Organization. Global policy report on the prevention and control of viral hepatitis in WHO member states. Geneva, Switzerland, 2013. http://www.who.int/csr/disease/hepatitis/global_report/en/.
  6. Hagan LM, Schinazi RF. Best strategies for global HCV eradication. Liver International, 2013; 33:68–79.
  7. World Health Organization. Sixty-seventh World Health Assembly. Agenda Item 12.3: WHA 67.6 Hepatitis. Geneva, Switzerland, 24 May 2014. Available at: http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R6-en.pdf.
  8. European Centre for Disease Prevention and Control. Surveillance. Annual Epidemiological Report 2013. Reporting on 2011 surveillance data and 2012 epidemic intelligence data. Stockholm: ECDC; 2013.

This chapter presents global findings from the World Hepatitis Alliance’s 2014 civil society survey in two sections.

The first section provides an overview of respondents. The second section describes the extent to which respondents agreed or disagreed with what their governments reported about hepatitis policies and programmes for the 2013 World Health Organization (WHO) Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. It also notes the issues associated with the greatest amount of agreement and disagreement.

Civil society survey respondents based in countries where governments did not submit information for the 2013 WHO global policy report did not have any information to review and hence did not complete this component of the survey. They only completed a survey component in which respondents were invited to write brief statements discussing the policy response to viral hepatitis in their countries. Excerpts from these statements are presented in the first part of the Africa, Europe and Western Pacific chapters of this report to highlight key areas of concern. The full text of all respondents’ statements can be found in the individual respondent entries in the second part of all regional chapters.

3.1. Respondents

Ninety-five organisations from 58 countries1 and one special administrative region responded to the World Hepatitis Alliance’s 2014 civil society survey. The governments of 46 countries provided information for the 2013 WHO global policy report, and thus the 76 respondents based in those countries were able to comment on the accuracy of their governments’ responses. The governments of 12 countries did not provide information for the 2013 report.2 The 18 respondents based in those countries instead commented on their governments’ responses to viral hepatitis by writing short statements about key issues. One additional respondent provided a short statement about how viral hepatitis is being addressed by the Special Administrative Region of Hong Kong, which was not invited to submit information for the WHO global policy report because it is part of China. Information about respondents is presented in Table 3.1.

Almost 30% of respondents to the civil society survey identified themselves as hepatitis patient groups, and another 16% identified themselves as nongovernmental direct service providers (Figure 3.1). Eleven percent identified themselves as medical societies.

Sixty-three percent of respondents were either voting or nonvoting members of the World Hepatitis Alliance at the time they submitted their surveys (data not shown).

Response levels by region are presented in Table 3.2, along with response levels by income group.

3.2. Highlights relating to civil society agreement or disagreement with what governments reported

The civil society survey contained 25 items based on the information that governments provided for the 2013 WHO global policy report. For each item, civil society stakeholders were asked to consider the government response to one or more questions about national hepatitis policies and programmes, and to select one of the following three statements: To our knowledge, this information is accurate; To our knowledge, this information is not accurate; or We take no position regarding this statement.

Detailed findings for all civil society survey items are presented in Annex C. In sum, approximately half of all civil society
respondents thought that the information from their governments was accurate for 18 or more of the 25 items.  Regarding the proportions of respondents who marked items as “not accurate,” approximately half thought that the information from their governments was not accurate for five or more items.

The following survey items were most commonly identified as points on which civil society respondents agreed with their governments’ responses: item 1.1, regarding the existence of a national strategy or plan for the prevention and control of viral hepatitis; item 4.1, regarding the existence of a national hepatitis A vaccination policy; item 4.6, regarding injection safety in health care settings; and item 4.8, regarding infection control for blood products. Further details are presented in Table 3.3.

The following survey items were most commonly identified as points on which civil society respondents disagreed with their governments’ responses: item 1.3, regarding whether the government has a viral hepatitis prevention and control programme that includes activities targeting specific populations; item 3.1, regarding viral hepatitis surveillance; and item 3.3, regarding disease registration and reporting. Further details are presented in Table 3.4.

 


  1. For the purposes of this report, Taiwan (Chinese Taipei) is referred to as a “country.” The World Hepatitis Alliance takes no position regarding the legal status of Taiwan (Chinese Taipei) as a sovereign state.
  2. Eleven of the 12 countries did not submit information for the 2013 WHO global policy report. One other country, Taiwan (Chinese Taipei), was not invited to submit information
    because it is not a WHO Member State.