Why raising awareness is important
Lack of public knowledge of the diseases, lack of knowledge among healthcare professionals and stigma and discrimination are all underpinned, in part, by a lack of awareness and so it is recommended that these three barriers should be collectively addressed.
When raising awareness, improving education and combating stigma and discrimination, different strategies are required for different populations and, as WHO suggests, they will be dependent on the country context and may include promotion through the mass media. In the Global Health Sector Stratergy it is stated
that “Concerted advocacy efforts, particularly by political and community leaders, and a sound communication strategy are required to increase public and political awareness of the public health importance of viral hepatitis…and to mobilize action”
This page will go into the detail of what you should advocate for to raise awareness.
Health authorities to ensure continuous medical education on viral hepatitis be provided from the early stages of training
1. Encourage the Ministry of Health to form a technical working group to support publication of clinical guidelines based on the latest World Health Organization recommendations. Ensure medical professionals and civil society are members of this group.
2. Speak to your local health authorities or relevant medical associations to encourage them to include a greater focus on hepatitis. This should include the clinical aspects of the disease along with other areas such as stigma and discrimination.
- Speak to a wide range of medical associations including those for nurses, GPs and other allied health professionals. Consider partnering with other health advocacy movements, such as HIV and women’s health.
- When discussing hepatitis C it may be helpful to focus on the unique aspect of being able to now cure a chronic disease. This could be especially relevant to GPs who spend a lot of time managing chronic disease.
3. Encourage medical professionals that you know to become NOhep Medical Visionaries and work with them to help them become champions for viral hepatitis within their workplace.
4. Partner with local universities to raise awareness amongst medical students. Empower them to become future change makers.
Laila Rizvi’s explains how The Health Foundation, Pakistan, are empowering students to become future change makers. Find out more here.
5. Work with local clinics and health authorities to organise, or participate in, educational workshops to raise awareness of viral hepatitis amongst healthcare professionals and share the patient voice
- Offering Continuing Medical Education (CME) credits may encourage more healthcare workers to attend
- We spoke to Patricia Vélez Möller, President of the Guatemala Liver Patients Association about the work she has done to raise awareness with medical professionals. Find out more here.
- Be Liver Smart project by Hepatitis Queensland, provides support to general practices to promote patient-centered care options for the management of hepatitis C in the community. Find out more here
6. Self-advocate. For those living with viral hepatitis learn as much as you can about the disease, your health, and your treatment options. Use this knowledge to empower yourself and ask questions to your healthcare provider about getting tested, the testing process and the treatments available. Offer suggestions and feedback to your healthcare team about ways to improve services for people living with viral hepatitis.
Hazel Heal from Hep C Action Aotearoa shares her experience of self advocating to healthcare professionals. Find out more here.
Enabling frameworks such as anti-discrimination laws and their enforcement and redress of discriminatory acts
1. If there are no anti-discrimination laws in place in your country, use article 16 of the World Health Assembly 67.6 resolution that urges Member States “to 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;” to advocate for its implementation.
- Look for a champion within parliament/government that you could partner with. UNITE is a group of parliamentarians that have come together to raise awareness and advocate to end HIV/AIDS, viral hepatitis and other infectious diseases and they may be able to connect you to champions within your country.
- Look at working with all relevant government departments, such as the Department of Labour and Employment.
There are different types of partnerships that you could engage with to help combat stigma and discrimination, featured in this case study’ from the Yellow Warriors Society. Find out more here.
2. Where laws are in place, conduct a survey amongst the affected community to determine if they are being implemented in practice. Use this as the evidence for advocacy around enforcement and/or offer ways to improve implementation. Including the patient voice in these reports will strengthen the data.
- WHA conducted a global survey that addressed this issue and the report Holding Governments Accountable may be a good starting point if you are considering a local survey.
3. Capture stories about the impact of stigma and discrimination to personalise it. These can be powerful advocacy tools that will complement the other approaches in this section. Link up with other organisations such as advocacy based groups working on the issue, human rights law commissions and media/journalist watchdogs to identify and track cases of stigma and discrimination.
For many years, the Hepatitis B Foundation has advocated for people living with hepatitis B, but due to stigma, the patient voice had largely been missing. In 2016 the Hepatitis B Foundation made it a priority to find ways to showcase the stories of patients and families impacted by hepatitis B. They launched #justB, a campaign that shares powerful, personal stories of people who have been affected by hepatitis B and want to share their experiences to educate communities and inspire action. Find out more here.
4. For those living with viral hepatitis you can offer your story to the media – become a spokesperson. You can use print, social media, TV and radio to share your experience of living with viral hepatitis.
- Partner with organisations offering training on how to share your story.
We spoke to HIV and hepatitis advocate Philip Baldwin about how he uses his story to raise awareness of viral hepatitis. Find out more here.
The decriminalisation of drug use and homosexuality as punitive laws hamper public health efforts
1. Speak with all the relevant stakeholders. For example, the Ministry of Justice and law enforcement agencies will likely need to engage in any response to ensure harm reduction services are able to be expanded and the rights of key populations are protected.
2. Look at public health studies conducted in countries that have decriminalised personal use of drugs, such as Portugal, and use successful outcomes as evidence for advocacy in your country.
- You may want to start by looking at countries that have harm-minimisation policies as this can be an important initial step in decriminalisation.
Matt Bonn from HaliFix shares how they advocated for Atlantic Canada’s first legally-sanctioned Overdose Prevention site. Find out more here.
National governments to join all countries in upholding the commitment made at the 63rd World Health Assembly (2010) to use World Hepatitis Day to improve education and understanding of viral hepatitis
1. Use the 2010 WHO resolution to hold your government accountable and encourage them to celebrate the day. Offer a partnership.
2. Hold a World Hepatitis Day activity/demonstration outside your government’s office.
- Contact the media to maximise impact.
3. Work with other stakeholders to strengthen the collective voice calling for governments to celebrate the day.
- A useful instrument is to provide your national key opinion leaders and/or medical associations with a template letter that they can send to the government.
Don’t limit your advocacy with governments to just World Hepatitis Day, this needs to be ongoing. Try to identify and create a group of champions within parliament/government. As a starting point you may want to see if any members of parliament are part of the UNITE network. You can educate them on hepatitis and use them to raise awareness with their colleagues and more broadly. They have the potential to make great impact. You can also look at partnering with them on other initiatives too. Hepatitis testing weeks or awareness months, such as those in Europe and the USA, and NOhep campaigns are good opportunities for partnership.
Action you can take
As well as advocating for change you can also take action yourself. The below suggestions could help you to accelerate momentum to Find the Missing Millions and eliminate hepatitis.
Promote the use of findings from national and/or WHO monitoring and evaluation frameworks to:
• develop focused awareness strategies which target populations that are being left behind
• create civil society-led shadow reports highlighting the experiences and expertise of civil society and the affected community to add further weight to national or WHO findings
(b) Highlight in campaign materials that viral hepatitis is potentially a cancer-causing disease
(c) Highlight that hepatitis can cause severe extrahepatic manifestations (symptoms and conditions outside of the liver function)
(d) Find influencers beyond the usual stakeholders that can help raise awareness (e.g celebrities, social media personalities and political leaders)
(e) Create enabling environments where people living with viral hepatitis are able to share their stories in order to humanise the experience of living with viral hepatitis and reduce the stigma around it
(f) Contribute to communication and awareness-raising campaigns by helping to formulate culturally specific messaging to debunk myths, convey a sense of urgency, and reduce stigma
- Altruism in Action is a Non-Governmental Organisation which works on viral hepatitis elimination with exiled Tibetans in the remote Himalayan Region of India. Find out more here.
- Great Lakes Peace Center (GLPC) targets different areas such as: breaking stigma and misconceptions, reducing barriers to diagnosis, informing people about the risks associated with hepatitis and encouraging the community to seek early medical services in order to reach all demographics. Find out more here.
(g) To ensure testing for hepatitis B and C is carried out alongside education on viral hepatitis so that awareness is increased in all people tested, not just those with viral hepatitis
(h) Use the Find the Missing Millions campaign or other awareness-raising initiatives like World Hepatitis Day and NOhep to promote testing and improve understanding of viral hepatitis
- In 2019, Sufabel Community Development Initiative (SCDI) used World Hepatitis Day as an opportunity to partner with the ministry of health in Nigeria’s Gombe State and other stakeholders to promote testing and improve the awareness of viral hepatitis. Find out how here.
- Care for Social Welfare International were able to raise awareness during a global pandemic. Find out more here.
- Kautz5 called upon various stakeholders use their expertise to raise awareness of hepatitis D. Find out more here.