Dear Katy and CHIFA colleagues,
Thank you so much for sharing your personal story of your son Elliott.
"Did you know that GBS (Group B Strep) is the leading cause of meningitis and sepsis in newborns?
Did you know that the current protocol is to only monitor post delivery for signs/symptoms of meningitis?
Did you know that 1 in 8 survivors are to have significant disabilities?"
The WHO fact sheeet on Group B STrep notes:
'Some babies who survive a serious GBS infection can have long-term health problems. About 20–30% of babies who survive GBS meningitis may have lasting problems such as hearing loss, seizures, or delays in learning to move, speak, or think. Some may also develop cerebral palsy, which affects movement and muscle control. Babies who survive GBS sepsis can also sometimes have developmental problems, though this is less common than after meningitis. Most babies recover fully, but some, especially after severe infection, may need ongoing follow-up care.'
An Australian study notes that 'Little is known about the long-term risk of death and hospitalisation after group B streptococcal (GBS) infection during infancy... Despite reductions in the overall rates of GBS infection (especially of early onset), the burden of disease remains high. Preterm infants are at high risk of death from GBS infection and all survivors continue to be at risk of death and health problems, including chronic conditions such as cerebral palsy and epilepsy.' Yeo KT, Lahra M, Bajuk B, et al. Long-term outcomes after group B streptococcus infection: a cohort study. Archives of Disease in Childhood 2019;104:172-178. https://adc.bmj.com/content/104/2/172.long [restricted access]
A Norweggian study found that 'Of GBS infection survivors, 20.7% were diagnosed with neurodevelopmental disorders (NDDs)... Infants with GBS meningitis were more often diagnosed with NDDs... The burden of invasive GBS infection during infancy is considerable and continues to affect children beyond infancy. These findings emphasize the need for new preventive strategies for disease reduction, and the need for survivors to be directly included into early detection pathways to access early intervention if required.' Mynarek M, Vik T, Andersen GL, Brigtsen AK, Hollung SJ, Larose TL, et al. Mortality and neurodevelopmental outcome after invasive group B streptococcal infection in infants. Dev Med Child Neurol. 2024; 66: 125–133. https://doi.org/10.1111/dmcn.15643 [open access]
A systematic review (2017) notes 'GBS meningitis is an important risk factor for moderate to severe NDI, affecting around 1 in 5 survivors. However, data are limited, and we were unable to estimate NDI after GBS sepsis.' Kohli-Lynch M et al. Neurodevelopmental Impairment in Children After Group B Streptococcal Disease Worldwide: Systematic Review and Meta-analyses. Clin Infect Dis. 2017 Nov 6;65(suppl_2):S190-S199. doi: 10.1093/cid/cix663. PMID: 29117331; PMCID: PMC5848372.
"Let’s have this discussion. Let’s bring awareness. What can we do different so we can minimize this disease?"
The WHO website notes: 'In 2020, Member States committed to implementing the Defeating meningitis by 2030 global road map. The roadmap focuses on eliminating the main causes of acute bacterial meningitis – including GBS, including through prevention, treatment and further research.' 'The road map on defeating meningitis sets out a plan to tackle the main causes of acute bacterial meningitis: Neisseria meningitidis ((Nm), meningococcus), Streptococcus pneumoniae ((Spn), pneumococcus), Haemophilus influenzae (Hi) and Streptococcus agalactiae (group B Streptococcus (GBS)).' It can be downloaded here: https://iris.who.int/server/api/core/bitstreams/64850fcf-300f-4b54-b234-...
I see that Marti was consulted in the development of this roadmap. Marti, please can you let us know about your role and the process? Are you happy with the final roadmap? Skimming the report, it seemed to me that it was addressing all causes collectively, with little specific content on Group B Strep. This may well reflect common factors. In addition, the roadmap is about meninigitis in all age groups. Did it adequately address perinatal infections?
Also, what progress has been made on the recommendations of the roadmap? Has there been a significant increase in political and financial support for meningitis in general, and for Group B Strep in particular?
Best wishes, Neil
HIFA profile: Neil Pakenham-Walsh is coordinator of HIFA (Healthcare Information For All), a global health community that brings all stakeholders together around the shared goal of universal access to reliable healthcare information. HIFA has 20,000 members in 180 countries, interacting in four languages and representing all parts of the global evidence ecosystem. HIFA is administered by Global Healthcare Information Network, a UK-based nonprofit in official relations with the World Health Organization. Email: neil@hifa.org