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Experts highlight impact on life after meningococcal disease for Australian survivors

Health experts and survivors have come together for World Meningitis Day (24 April) to draw attention to the potential lifelong impact meningococcal disease has on survivors and families, including both the emotional, societal and economic implications, but also to recognise the incredible bravery and resilience of the many Australian survivors of this rare, but devastating disease.  

Meningococcal disease is a bacterial infection of the blood and/or membranes that line the spinal cord and brain, it can be fatal within 24 hours or leave survivors with permanent disability.1 Symptoms of this disease, are often non-specific in the early stages and easily mistaken for a cold or flu, making it difficult for individuals to identify and for healthcare professionals to diagnose. 2,3  

Speaking ahead of World Meningitis Day, the theme of which for this year is ‘life after meningitis’, Infectious disease expert, University of Sydney, Professor Robert Booy, said the traumatic nature of the events that may be experienced can have far-reaching consequences for survivors and their families. “Those who manage to survive invasive meningococcal disease may have to endure severe lifelong complications, which can be physical, intellectual, emotional and financial,”4 he said.

“The disease can cause death in about 1 in 10 of those affected, while up to one in five survivors of meningococcal disease can be left fighting serious long-term complications.4 These complications can include skin scarring, amputation that may range from loss of a digits to loss of limbs, damaged bone growth plates, memory loss, seizures, hearing and sight loss, difficulty concentrating, poor memory and low academic achievement, and acute levels of stress.”4

The reality is that many survivors of meningococcal disease require years of costly ongoing medical treatment, follow-up surgery, rehabilitation as well as the potential impact on education and employment opportunities.”4

“Major financial burdens incurred by impacted families or individuals during hospitalisation and after discharge too, with long hospital stays, corrective surgeries, physiotherapy and rehabilitation, prosthetic provision, skin graft surgery, learning support, psychotherapy and special educational help.4 These costs place a huge strain on individuals and families, especially when a family may have to rely on an independent source of income,”he said.

Globally, there are thirteen strains of meningococcal bacteria, of which there are six main strains that most commonly cause disease.  Currently in Australia, strains B, W and Y cause the majority of disease. In 2018, there were 281 cases of meningococcal disease in Australia with the B strain causing 119 cases, the W strain causing 100 cases and the Y strain causing 45 cases. Meningococcal B is the strain most commonly reported in young children and adolescents, whilst Meningococcal W and Y were increasingly reported in older adults.5

Meningococcal W disease appears to have a higher case fatality rate compared with disease caused by other serogroups (about 9.3% for meningococcal W versus 5% for meningococcal B), which may indicate a tendency towards more severe infection from strain W.2 A study examining cases of meningococcal disease in South Australia over a ten year period, reported that those contracting meningococcal B may utilise the healthcare system more frequently than patients from other serogroups leading to higher inpatient hospital costs.6

Professor Booy noted that, “whilst rare, meningococcal represents a significant public health concern due to the severity of the impact of life after meningococcal disease”.

“We can’t underestimate the extraordinary strength shown by survivors of meningococcal disease and their families to overcome the physical, cognitive, emotional and financial adversity, and it’s essential that communities stand shoulder-to-shoulder to be aware of the significant impact meningococcal disease can have on a life,” Eliza Ault-Connell, Director of Meningococcal Australia and Commonwealth Games athlete concluded. 

The theme for this year’s World Meningitis Day is ‘Life After Meningitis’ which aims to shine a spotlight on the long term physical and financial burden of meningococcal meningitis on individuals, families and the wider community.

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Signs of meningococcal disease:

  • Meningococcal disease can start with symptoms similar to a cold or flu (fever, runny nose, sore throat, feeling tired).2,3  This can make it hard to diagnose early. 2,3 
  • Classic clinical features of meningococcal disease such as a red-purplish rash, headache, neck stiffness and sensitivity to light often appear late or not at all. 2,3 
  • Other common symptoms may include sudden high fever, severe headache, nausea and vomiting. 2,3 

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  1. World Health Organisation. Fact Sheet: Meningococcal meningitis. (accessed on accessed 5 April 2019).
  2. National Centre for Immunisation Research & Surveillance (NCIRS). Meningococcal vaccines for Australians | NCIRS Fact sheet: August 2018. (accessed 5 April 2019).
  3. Van Deuren et al. Clin Microbiol Rev. 2000;13:144-166
  4. Martinón-Torres, Federico. Deciphering the Burden of Meningococcal Disease: Conventional and Under-recognized Elements. 2016. Journal of Adolescent Health 59 (2016) S12eS20. (accessed 5 April 2019).
  5. Department of Health. Invasive meningococcal disease national surveillance report: The Australian Government Department of Health 2018. Available from:$File/1Oct-31Dec19-qrt3-IMD.pdf
  6. Wang B, Haji Ali Afzali H, Marshall H. The inpatient costs and hospital service use associated with invasive meningococcal disease in South Australian children. Vaccine. 2014;32(37):4791-4798.