Prevention and control of viral hepatitis: The role of patient and advocacy groups in and outside Europe. (2008)


The Viral Hepatitis Prevention Board held its Spring meeting  March 13-14, 2007 in Lucca, Italy, on the PRevention and contorl of viral hepatitis: the role and impact of patient and advocacy groups in and outside Europe.
This section provides highlights of meeting sessions and is concluded with lessons learnt and recommendations for future actions.

Patient organizations’ structure, objectives, target audience and activities
The structure and organization of patient organizations range from small groups of volunteers with none or a few paid professionals to full membership organizations with assemblies, boards, directors, advisors and trustees. Some charge their members with fees whereas others are traditional associations. Some organizations have formal, traditional decision-making processes, others make use of innovative e-governance such as electronic fora organized to reach consensuses. They are funded via a variety of sources, with largely varying proportions: fees, fund-raising activities, private donations, grants, government support or pharmaceutical industry sponsoring. In order to maintain their independence, some patient organizations limit pharmaceutical support.

Patient organizations’ objectives vary from focus on patient welfare and support, sometimes for one condition only, to broad activities covering all forms of liver disease, including non-viral conditions and immunization in general. Some organizations centre their activities on prevention initiatives while others play a major role in counselling. Most of them are involved in information dissemination, including educational materials and all aim at increasing public awareness. Many are involved in advocacy and lobbying activities, others are coordinating other groups and some are actively involved in research.

Patient organizations target a broad audience ranging from patients and individuals at risk to the general population, and national and professional bodies. Medical and professional information is spread and awareness is raised, often through conferences, among general practitioners and healthcare workers including prevention of occupational exposure to blood-borne viruses. Some organizations are active in issuing guidelines for the medical profession and public, others organize campaigns focusing on the need for screening.

Patient organizations provide a range of services and activities, including networking, online and chat fora; informational and educational materials (through printed or electronic media); toll-free telephone help lines; campaigns and talks in schools. Some organize conferences and counselling centres or conduct surveys on perception of illness. Many of them are active in public relations campaigns and participate in World Hepatitis Day or national liver days. Advocacy and lobbying are key activities to influence policy through decision makers in order to ensure implementation of legislative proposals and to advocate for accurate prevention strategies, vaccine development, vaccination programs and their funding. Some patient organizations are also actively involved in vaccine delivery campaigns.

Strengths and opportunities versus weaknesses and challenges
Successes achieved by patient organizations to date are mainly attributable to their strengths as influential and reliable resources to communicate and interact with a broad range of stakeholders; their key role as representatives of civil society and their direct contribution to improved quality of life of infected individuals. Such strengths create
opportunities for these organizations to be more involved in primary
prevention, data collection, development of guidelines (e.g. screening
programs) and synergistic collaboration with government and specialists
in order to raise the profile of viral hepatitis, counter anti-vaccination
propaganda and promote initiatives at global level.
However, limited or lack of funding and governmental support and
related competing interests, sometimes coupled with limited involvement
in specialist activities and low profile advocacy, were identified
as remaining challenges to be faced by many patient groups

Achievements and challenges for the future
Many objectives have been achieved to date: awareness about liver disease
has been raised through the use of media or high-profile innovative
campaigns; patient organizations’ support has facilitated changes
in laws and legislation and they have also helped in setting the gold
standard as well as increasing access for HCV treatment. Furthermore,
they have contributed to the introduction of routine newborn HBV vaccination,
decreased HBV and HCV disease burden and prevalence, and
destigmatization as well as increased recognition of patients’ human
rights. Patient organizations have also managed to organize free testing
and screening of patients and to promote HBV vaccination in HCV-positive
patients. Patient organizations’ cultural and immigrant outreach
has been particularly beneficial for vulnerable, hard to reach groups.
Despite an impressive list of achievements made during the last years,
important challenges remain to be faced for the near future.
Some proposed legislations and programs still need to be implemented
and advocacy for implementation of national plans has to continue. In
some regions, e.g. the West Balkans, further development of assistance
in the health sector is needed. In addition, outreach to hard to reach
populations such as injecting drug users and immigrants, remains important,
using an appropriate approach and language. Awareness should be increased at global level and reinforced support
of the World Hepatitis Day is needed while cooperation and partnership
to build on successes during European Immunization Week should
be ensured. Other, more specific challenges include increased awareness
and knowledge among healthcare workers and improved quality
of epidemiological data. Patient organizations’ activities should be expanded across borders, between
countries, as was shown by the example of Germany and Turkey
successfully collaborating in prevention programs. Patient organizations also felt that the impact of their activities needs
to be evaluated, taking into account what has been achieved and how
cost-effective the activities were.
Finally, opportunities for the future were also considered such as
VHPB endorsement of the World Hepatitis Day and ELPA representation on VHPB board.

Based on a presentation by D. FitzSimons, WHO.

Further information is available in the corresponding Viral Hepatitis Issue or  meeting web page