The first high-level meeting to defeat meningitis – celebrating a major milestone

May 2024

In 2020, countries around the world agreed to take action against meningitis, committing to a global plan, led by the World Health Organization (WHO), to dramatically improve meningitis prevention, diagnosis, treatment and aftercare. The plan – WHO’s Defeating meningitis by 2030 global road map – was officially launched in September 2021.  

This year, on April 26th, we celebrated another important milestone; WHO’s first high-level meeting focused on meningitis. Co-hosted by the French Government at the Institute Pasteur in Paris, the meeting aimed to raise awareness and resources to drive forward implementation of the Road Map. It was attended by governments, international institutions, civil society representatives and advocates.  

A recording of the meeting is available to watch on the WHO website. 

Below, we have gathered some of our key highlights from the day which saw high level political engagement, heartfelt testimonies from people affected by meningitis and a collective desire to defeat the disease by 2030.

Advocates lead the call for action 

People with lived experience of meningitis took centre stage at the high-level meeting. Their testimonials punctuated scientific panel sessions about critical elements of Road Map delivery and reminded everyone in attendance about the very real impact of meningitis. 

The importance of quality aftercare and support 

Mike Davies, who we are proud to call a Meningitis Research Foundation ambassador, spoke about his experience of bacterial meningitis, his recovery and his life since. Mike is the tenth person in the United Kingdom to receive a double hand transplant.  

“my blessing in the last year is to have hand transplants. A terrific donor and family said, ‘yes you can have these hands’, so I was on a programme for four years building up to… be a recipient.” 

The Road Map’s fourth pillar is focused on improving availability and access to care and support for people affected by meningitis, their families and carers. This is essential because one in five people who survive bacterial meningitis experience long-lasting after effects.  

As our CEO, Vinny Smith, stated during the meeting, for too long the after effects of meningitis “have been overshadowed by the urgency of acute treatment”. The Road Map will reinforce and complement wider initiatives which aim to strengthen global healthcare systems to ensure that they are strong enough not only to respond to the initial illness but also to provide comprehensive aftercare and support.  

The importance of immunisation in preventing meningitis 

Alicia Stillman travelled from Michigan, USA to attend the meeting in Paris. She is the Director of the Emily Stillman Foundation and the American Society for Meningitis Prevention, as well as a member of the Confederation of Meningitis Organisations (CoMO). She spoke of the issues affecting rates of meningitis vaccination in the USA. This includes low awareness and education among both individuals and healthcare providers - something that she is dedicated to changing following the death of her daughter.  

“[The charity’s work] will allow me to fulfil the promise that I made to my daughter on that cold February morning, that I promise, I told her, I will figure this out and I will make sure that it doesn’t happen in other families”. 

The high-level meeting took place during World Immunization Week in recognition of the essential role that vaccinations play in preventing the disease. Since the launch of the Road Map, there have been several developments in this area, including the WHO pre-qualification and initial rollout of a pentavalent ACWXY meningococcal conjugate vaccine (MenFive). Reaching the Road Map’s visionary goal of reducing vaccine-preventable deaths by 70% will require more effective, comprehensive vaccination schedules globally.  

The importance of working collaboratively  

Siobhán Holohan, CoMO member and director of ACT for Meningitis, shared her organisation’s commitment to defeating meningitis in Ireland. This includes plans to create an aftercare support strategy for “those who are living with the long-term after effects or those who are on the same journey as me through bereavement.” This service will be created by working in partnership with other national organisations.  

As emphasised by Dr Tedros Adhanom Ghebreyesus, Director-General of the WHO, in his speech at the high-level meeting, collective action is essential in achieving our shared aims: “The goals we have cannot be achieved without the partnership of governments, civil society, private sector, academic institutions, NGOs, foundations and all players. We have to work together.” 

Now is the time for action 

Italian athlete and mountaineer, Andrea Lanfri, joined the meeting and shared some of the highlights from his record-breaking career. Including when he made history by becoming the first athlete with multiple amputations to reach the summit of Mount Everest, just seven years after recovering from meningitis. 

“So, I didn’t just start running again, I reached new records. I didn’t just start climbing again, I developed my own technique to exceed any limit. I didn’t just start reaching peaks again, I reached the one that was in my dreams as a kid: Mount Everest.” 

For many in the room, and those watching the livestream around the globe, Andrea’s story symbolises the commitment needed to defeat meningitis. The Road Map outlines the goals that need to be met to bring us toward a world free from meningitis. Now is the time for action.  

Publication of WHO’s investment case for meningitis 

“Investing in meningitis, will prevent cases of disease, cases of long-lasting sequelae and save lives. An investment in meningitis is an investment in primary health care, which will provide benefits far beyond meningitis.”

In addition to the personal testimonies and scientific conference sessions, the meeting also included the launch of WHO’s investment case for meningitis.  

Highly anticipated, the document (available on the WHO website) breaks down the resources needed to achieve each of the Road Map’s five pillars; prevention and epidemic control; diagnosis and treatment; surveillance; support and aftercare; and advocacy and engagement. 

This is the first time a price-tag has been put on what it will take to defeat meningitis.  

Want to learn more?  

Marking our support: Meningitis Research Foundation and the Confederation of Meningitis Organisations’ shared commitment 

In celebration of the high-level meeting, Meningitis Research Foundation and our global membership network, the Confederation of Meningitis Organisations, renewed our pledge to provide a platform for advocates around the world to raise and unite their voices. As stated above, advocates and people with lived experience of meningitis bring essential expertise to implementing the global Road Map; from engaging with global initiatives such as World Meningitis Day, to individual actions, like meeting with policymakers or holding an event in memory of a loved one. We cannot defeat meningitis without prioritising the voices of those most affected. 

As our CEO, Vinny Smith, stated on the day, “Advocacy is our most powerful tool. It can influence political commitment and mobilize the resources necessary to support policy prioritization of meningitis. Every voice raised, every story shared, adds to a chorus that cannot be ignored. Together, we can turn individual whispers into a roar that echoes in the halls of power.”  

You can read our full commitment here.  

Join the Race to 2030 

Are you a civil society organisation or activist who is passionate about seeing meningitis defeated? Stay informed and join the Race to 2030 movement. Find out more here. 

Since the charity was founded in 1989, we have awarded 161 research grants. The total value of our investment in vital scientific research is over £19.1 million (€24.7 million).
You don’t need to face meningitis and sepsis alone
A global vision for meningitis by 2030 and an action plan to get there.