Find the Missing Millions In-country Programme
Find the missing millions
Through the Find the Missing Millions in-country programme WHA worked with members in five different countries to support them implement advocacy projects which addressed the barriers to diagnosis.
The organisations that took part in the programme were;
· Positive People Armenian Network – Armenia
· National Liver Foundation of Bangladesh – Bangladesh
· Hepatitis Alliance Ghana – Ghana
· Koalisi Satu Hati – Indonesia
· Caribbean Hepatitis C Alliance – Jamaica
Positive People Armenian Network
Location: Yerevan, Armenia
Positive People Armenian Network (PPAN) was founded in 2006. The mission of the organisation is to create a society, where people living with HIV, TB and hepatitis will be given the same courtesy as other members of society and will feel free disclosing their status without fear of demonisation. They aim to protect the rights of people living with HIV, Tuberculosis, hepatitis through the implementation of advocacy activities.
Armenia was hit drastically by Covid-19 and also faced political issues which impacted the ability of PPAN to carry out the project objectives, however they persevered and focussed on one key objective which was;
· To raise awareness of viral hepatitis
PPAN developed an informative Public Service Announcement (PSA) regarding hepatitis, which provided information regarding where and how individuals could get Hepatitis C testing and treatment, as well as the cost of the treatment. PPAN were able to share this on one of the regional TV channels and through social medial platforms such as; Facebook and YouTube.
Feedback from the member: “WHA was very helpful in every step of project implementation. They helped to overcome all the obstacles, they were very flexible and openminded, which helped to change some activities accordingly to the country situation.”
National Liver Foundation of Bangladesh
Location: Dhaka, Bangladesh
National Liver Foundation of Bangladesh (NLFB) is a not-for-profit organization established in April, 1999. The organisation is the first of its kind in Bangladesh which is dedicated to prevention, treatment, education and research on liver diseases with special emphasis on viral hepatitis. NLFB seeks to raise awareness in the general public about the prevention of liver disease, especially viral hepatitis, and advocate and coordinate with Government and non-government organisations regarding the issues of viral hepatitis and liver diseases.
Through the FMM project NLFB aimed;
• To improve awareness of viral hepatitis in urban and rural populations, addressing myths and misconceptions and increasing understanding around the importance of getting tested
• To advocate to the government to increase testing facilities, especially in rural populations, and to decrease the cost of testing so that it is affordable for those who need it
NLFB successfully worked on tackling the misconception of viral hepatitis within urban and rural populations by actively targeting areas and platforms visited by the community. This included awareness activities at local
cricket matches and advertisements on cricket websites which have a reach of over 1 million people. Additionally, NLFB were able to secure hepatitis awareness advert with a well-known Youtuber, which was viewed by over 920,000 people. NLFB did this by working closely with stakeholders and community leaders highlighting the importance of hepatitis awareness. Despite the challenges posed by the ongoing Covid-19 pandemic they have also been able to start their political advocacy.
Feedback from Members: “Bangladesh is a densely-populated country, about 65 per cent of the total population live in rural areas, where there is a lack of awareness of viral hepatitis and the communities are often underserved by health care systems.”
Hepatitis Alliance Ghana
Location: Accra, Ghana
Hepatitis Alliance Ghana was founded to protect the rights of people living with chronic hepatitis. They seek to do this through raising public awareness about hepatitis infection, particularly amongst young people and women in Ghana, influencing public health policy and practice in relation to viral hepatitis and designing and disseminating viral hepatitis educational materials.
Through the FMM project Hepatitis Alliance Ghana aimed;
· To increase political will to implement the hepatitis national plan
· To increase knowledge amongst healthcare providers
· To Increase knowledge amongst selected communities
Hepatitis Alliance Ghana successfully accomplished all their objectives and worked closely with WHA in order to achieve them. They utilised the media to help with their political advocacy, using press releases to call for the government to integrate hepatitis services with existing HIV structures, include the cost of hepatitis services such as laboratory tests (e.g., viral load, scan) and recommended treatment in the national health insurance schemes and to implement hepatitis B birth dose vaccination as a national policy. Hepatitis Alliance Ghana also utilised press briefings with various media houses including print and TV stations to present the burden of hepatitis and its negative effect on the lives of Ghanaians using evidence from their research. Some of the popular media outlets used included TV3, GHOne TV, Atinka TV, and Daily graphic. As a result of their efforts, for the first time, hepatitis issues featured in parliamentary discussions.
Members feedback: “The constant interaction with the WHA team shaped our programme throughout the implementation period. Also, the resources from WHA website have been very useful.”
Yayasan Koalisi Satu Hati
Location: Jakarta, Indonesia
Yayasan Koalisi Satu Hati is a non-profit organisation for people living with, and affected by, viral hepatitis and HIV. The organisation was formed to increase awareness of viral hepatitis and HIV in Indonesia and to educate the general public about the disease and the treatment options available in Indonesia.
According to an investment case for hepatitis C scale-up in Indonesia done by Pharos Global Health and University of Bristol, to reach elimination by 2030, Indonesia will need to treat 600,000 people by 2024. However, this will require a massive scale up in their response and through the FMM project Yayasan Koalisi Satu Hati aimed to address some of barriers to that scale up.
The project aimed to:
• Raise awareness of viral hepatitis both within the general and key populations
• Advocate for an increased national budget for Hepatitis C in Indonesia
• Advocate for decentralisation of services
• Advocate for a reduction in the out-of-pocket cost for the diagnosis and care of viral hepatitis
Koalisi Satu Hati achieved their objectives and one of their most notable achievements was working closely with the Ministry of Law and Justice in order to prioritise Hepatitis in the national five-year plan. The Indonesian government was able to put viral hepatitis as one of their priority focuses in the 2020-2024 National Medium-Term Development Plan, which previously only encompassed HIV and TB as the two focus areas of communicable disease in the National Plan.
Feedback from Member: “The knowledge gained through the programme made it easier to speak to the Government as we are seen as an equal partner.”
Caribbean Hepatitis C Alliance
Location: Little London, Jamaica
Caribbean Hepatitis C Alliance aims to be the leading patient-oriented hepatitis organisation in the Caribbean.
Their mission statement outlines their desire to provide effective services through education, screenings and advocacy. They have identified that in Jamaica there is a significant lack of knowledge from both the public and health care professionals about hepatitis C and that this has a negative effect on the testing landscape in Jamaica.
Project aims and objectives:
· To establish a national response to hepatitis C
· To integrate hepatitis C screening with HIV services
· To educate healthcare professionals about hepatitis C
The Caribbean Hepatitis C Alliance created an in-depth presentation explaining the prevalence of hepatitis in Jamaica and a detailed plan on how to work towards elimination. The success of the presentation resulted in the coordination of a strategic planning meeting to discuss the national response to eliminate viral hepatitis. This meeting included the Minister of Finance, Minister of health and Chief Medical Officer and was an important first step in establishing a national response. The Caribbean Hepatitis C Alliance also worked on the educating other stakeholders to incorporate them in the meetings.
Feedback from member: “The lack of knowledge about hepatitis C among the public and health care professionals has a great impact on the testing landscape here in Jamaica. Even if people want to undergo testing, it cannot be done without the recommendation of a doctor, and in many cases, doctors have dismissed the patients’ requests.”
Find the missing millions
A full report including the all the organisations activities will be available shortly.