We’re delighted to share a new set of case studies featuring the advocacy successes of CoMO members.
CoMO’s network comprises a diverse range of organisations and individual advocates who all play their part in working towards achieving WHO’s vision to defeat meningitis by 2030.
Despite the many differences between organisations, our members have achieved considerable successes over the years, often with small teams and limited resources. For many starting on their journey to raise awareness or advocate for changes to policy or practice, it may seem like there are too many obstacles in the way of achieving the goal. We’re sharing these case studies, so that members can learn from the experience of others, and the strategies, ideas and approaches that helped them achieve change.
Join us as we take you across the world to learn more about the challenges CoMO members have faced in creating change, and how they overcame them. We’re only sharing brief teasers so be sure to click on the button if you want to read the whole story.
Care and Development Centre (CADEC) is a non-governmental organisation that focuses on a variety of issues relating to women’s health, including raising awareness of meningitis. While meningitis may not, at first glance, seem like a women’s health issue, women are often made responsible for family health, including arranging vaccine appointments and looking after sick relatives.
As a result, CADEC organises outreach events at local markets, schools, community meetings and health centres. There’s a particular focus on rural areas as well, to raise awareness amongst ‘hard to reach’ mothers, sisters, aunties, wives and daughters. By being a strong advocate for the provision of aftercare and support for people affected, CADEC Director, Omorodion Rhoda Omoile has been invited to join WHO’s Africa Region Technical Working Group for the Global Roadmap to Defeat Meningitis.
In 2012, Méningites France Association Audrey and Association Petit Ange Ensemble contre la méningite came together to promote vaccination against infectious diseases such as meningitis, forming a coalition: Ensemble contre les Méningites (ECLM). The co-founders sadly know too well the harm meningitis can cause, with the disease claiming the lives of their children before there was a vaccine available. Drawing on their experience, ECLM share personal meningitis stories, distribute materials to raise awareness of meningitis across France, and advocate for vaccination against meningitis.
Drawing on the evidence and expertise of the CoMO network, ECLM provided testimony to a Technical Committee on Vaccination, using their passion and conviction to convey the need for the MenB vaccine. The Haute Autorité de Santé (French National Authority for Health) ruled that the MenB vaccine should be recommended, a landmark decision that will protect many more children.
Asociación Española contra la Meningitis (AEM) has been working to reach new audiences with information on why we need to defeat meningitis, developing a storybook to counter fear of vaccines among children and learning more about politics to take a more strategic campaigning approach.
Currently, the MenB vaccine is only offered in 3 of the 17 autonomous regions in Spain. AEM recognises that lobbying for change takes time but have a goal in mind: that all autonomous regions include the MenB vaccine in their regional calendars for infants.
So far, AEM’s campaigning has gone really well and they share some of their tips. Now, several regional health authorities are contemplating on how they might facilitate the inclusion of the MenB vaccine and Cataluña has announced that they will offer the vaccine to all children from January 2022.
Patti Wukovits and Alicia Stillman started the foundations, The Kimberly Coffey Foundation and The Emily Stillman Foundation in memory of their daughters, who they lost to meningitis. Working together, the foundations formed the Meningitis B Action Project (MAP).
MAP recognised the need to make families aware that young people need two meningitis vaccines to be protected against the disease, and to communicate this simply and clearly to families. Building a community of 3,000 advocates and reaching over 44 million on World Meningitis Day alone, the organisation works to raise awareness about the need for the MenB vaccine, and strives to engage with the US Advisory Committee on Immunisation Practices (ACIP) in the hopes of strengthening the official recommendation on MenB vaccination.
Meningitis Research Foundation (MRF) and Meningitis Now worked in partnership to bring three families affected by meningitis together with their local MPs to share their experience and advocate for better diagnosis and treatment for the disease. By connecting with local MPs, who then raised the issue and gave it a national profile, the families were able to secure a meeting with then Health Secretary, Jeremy Hunt. Their moving testimonies led to the government establishing a working group of affected families, meningitis charities and experts, to look at how to improve early diagnosis and treatment of meningitis.
Also in the UK...
In 2011, MRF gathered evidence to present two fictional scenarios, mapping out the costs of providing support and aftercare for individuals with lifelong meningitis after effects. This research is referred to as ‘Counting the Costs’ and aimed to demonstrate how the harm caused by meningitis is often underestimated.
For the two fictional individuals, ‘Peter’ and ‘Emma’, it was revealed that supporting Peter to the age of 70 and Emma to the age of 50 would cost upwards of £2.5 million. This work, along with campaigns like ‘Meningitis Matters’ and a letter co-signed by hundreds of doctors, raised the national profile of meningitis as a public health issue and the importance of prevention through vaccination.
The MenB vaccine is now routinely offered to infants in the UK and the MenACWY vaccine is provided to teenagers and university students. Continual interactions with policy makers and a dedication to sharing meningitis stories helped make this change possible.
Una Vida Por Dakota’s message was delivered by a variety of trusted spokespeople, reflecting a range of Peruvian cultures.
Una Vida por Dakota launched a campaign that creatively used video storytelling to encourage the vaccination of older adults. They found that preventing illness in older people, as opposed to offering treatment, was not really part of the culture in Peru, despite its many benefits.
Vaccine uptake for the pneumococcal vaccine was low, despite it being offered for free to older adults in their local health centres. The Narradores de Historias (Storytellers) campaign aimed to change that. The short videos feature an older family member recounting a story to a younger family member but being interrupted by a coughing fit. A voiceover then announces that, ‘pneumonia should not interrupt a good story’. Excellent project management skills, evaluation and trusted spokespeople helped the campaign to reach millions.
Meningitis Centre of Australia (MCA) has spent many years campaigning for immunisation against meningitis-related diseases in Australia. The organisation is chaired by Bruce Langoulant, who has been an active advocate since his daughter’s experience of meningitis, which left her with lifelong after effects. To ensure other families do not suffer in the same way, Bruce shares the story of his daughter and family to raise awareness of the disease, and MCA offers up-to-date information on meningitis so families always have a resource to turn to.
Alongside sharing stories, MCA have run many successful campaigns such as their ‘Free-Pneumo’ campaign, whereby they convinced Health Ministers at the time that the pneumococcal vaccine should be included within the national immunisation programme. This resulted in every child born post-January 2005 receiving the jab that wasn’t available for Bruce’s daughter.
Turkey Meningitis Information Centre raises awareness about meningitis in Turkey the help of students and volunteer advocates. Mehmet Gençel created the organisation after learning about a friend’s daughter who contracted the disease. He didn’t know that meningitis could kill within 24 hours if left untreated and as a father, he wanted to know how to keep his children safe and how to inform other families to do the same.
Working with students and adapting to virtual means of awareness-raising during Covid-19 has led to a range of creative projects. Social media is used to relay messages, a colouring book about meningitis has been shared with schoolchildren and the group host a podcast featuring medical experts and families who have experienced meningitis.