A new study, funded by one of CoMO's members, the Spanish Association against Meningitis (AEM), and conducted by researchers at Grupo de Economía de la salud y gestión de servicios sanitarios (IDIVAL), explored the many consequences of meningitis for families. This study is the first of its kind in Spain, providing a holistic view on the financial, emotional, physical and psychological impacts of the disease by asking people affected to complete a survey.
For almost 55% of respondents who contracted the disease, the main after effects mentioned were: scarring, amputations, motor deficits, severe bilateral hearing loss, chronic migraines, epilepsy, and anxiety, among others. Beyond the ongoing medical check-ups that are required, 60% of the people affected by the disease required emotional and personal support, underlining the important role of support groups and helplines.
For people living with long-term after effects associated with the disease, there are considerable impacts that go beyond the individual. For one, families of children affected provide on average 20 hours per week of informal care. In most families, this unpaid yet essential work typically falls to a female relative (aged 39 years), usually a mother, whose ability to pursue a full-time career is directly impacted. There is also an economic burden of meningococcal disease for people with life-long needs as rehabilitation (e.g. speech therapy, physical care, hearing therapy etc.) and technologies (e.g. prostheses) is usually expensive. In Spain, this economic cost for someone for life-long needs came to €11,050 per year and up to €921,901 throughout someone's lifetime. In some extreme cases some families were paying €200,000 a year.
While the study was able to capture some indirect costs related to lost productivity, indicating that: 1) bereavement often results in sick leave and depression and 2) families providing care spend a considerable amount on transport and care, not all indirect costs could be counted due to a low response rate.
Vaccinating against meningitis provides the best protection against this aggressive disease that can kill or leave someone with life-long after effects in under 24 hours. Unfortunately, more than 70% didn’t reply to further questions about prevention but of those that did respond confirming that they had been vaccinated, more than 10% were unaware of which serogroup they had been vaccinated against.
This pioneering study captures the figures behind the personal stories patient groups often hear about the intense and life-long consequences of meningitis. Elena Moya, Vice President of AEM, says:
“Our study reinforces the Strategic Plan of our association and also the WHO’s Roadmap to defeat meningitis by 2030:
Raising awareness of all the after effects caused by meningitis nowadays. It is the first time in history that a study shows the general cost, not only the economic one but the emotional burden of being affected by meningitis as well.
Advocating in Spain for the introduction of vaccines that can prevent all types of meningitis. There is a regional lack of social equity and access to immunization.
We work for a change. Numbers talk but names really matter. Let us defeat meningitis together.”
These findings, underscoring the multiple impacts of meningitis, align with the conclusions of a CoMO-sponsored study that provided a look into the longer-term effects of the disease in Australia. Both these studies highlight the complexities of national cost effectiveness evaluations conducted on meningitis vaccines due to the considerable costs associated with the disease. These costs indicate that meningitis clearly affects more than just one individual’s health for a short period of time, instead affecting the health, wellbeing and livelihoods of entire families for many years.