Two years on – where are we now in the fight for greater protection from MenB?

Two years since two-year-old Faye Burdett tragically died from meningococcal B septicaemia (MenB), and the biggest ever public health petition, Meningitis Research Foundation (MRF) continues to help fight for fairer access to vaccines and push for wider protection against MenB for people in the UK.

Introducing the MenB vaccine for babies in the UK in 2015 was a major step forward but the rules that the government’s vaccine advisory group (the JCVI) have to use to decide whether to fund vaccines are unfair, and consequently, the vaccine was not offered to all children under five.

MRF estimates that if rules were fairer and the vaccine had been made available to all children under five, it would have prevented 400 cases of MenB predicted to occur in this age group between September 2015 and April 2020.*

After more than 800,000 people signed a petition in 2016 calling for the MenB vaccine to be made more widely available, the government promised to review the process for vaccine decision making. MRF provided evidence to show that it was unfair and what needed to be fixed. 

A report produced by the Cost-effectiveness Methodology for Immunisation Programmes and Procurements (CEMIPP) working group recommended changes to the vaccine decision making process. The public health minister promised petitioners that the CEMIPP report would be published in 2016 but instead it was passed on to an internal government group, the Appraisal Alignment Working Group (AAWG), and no report has been published.

How is our advocacy work helping?

Over the past year, MRF has been keeping the pressure on and calling for a change to the government’s unfair rules in a number of communications and meetings:

• 27 March 2017: MRF met with the Deputy Chief Medical Officer, the Department of Health Chief Economist, and representatives from the AAWG at the Department for Health to highlight our concerns
• April – June: MRF sent evidence to the Deputy Chief Medical Officer
• 18 July 2017: MRF wrote to Steve Brine MP, the then new Parliamentary Under Secretary of State for Public Health and Primary Care
• September 2017: During Meningitis Awareness Week MRF’s members and supporters wrote to their local MPs asking why the CEMIPP report was delayed and telling their personal stories
• 7 October 2017: MRF met with Bristol MP Darren Jones alongside Nicole Zographou, whose brother George tragically died from MenB during the summer
• 11 October: MPs Jim McMahon and Kerry McCarthy - both of whom have families in their constituencies who lost children or teenagers to MenB - called for more to be done to protect people from meningitis. The Prime Minister responded with the promise of a meeting between the Health Secretary, Jeremy Hunt, families, charities and campaigners.
• 19 October 2017: MRF received a reply to the letter sent to Steve Brine MP in July
• 29 November: MRF supported the Health and Petitions Committee when it criticised the government for breaking their promise to publish the CEMIPP report
• 29 November: Families affected by MenB and meningitis charities met with Jeremy Hunt. In this meeting Jeremy Hunt committed to setting up a working group to make recommendations to improve awareness of meningitis and septicaemia. Jeremy Hunt asked for evidence showing that vaccine rules are unfair to be sent to him directly, and MRF is providing this. We look forward to his response.

 
How is our research helping?

MRF has continued to fund research that could lead to wider access to vaccines to protect the whole population.

Teenagers are more likely to ‘carry’ the meningococcal bacteria in the back of their nose and throat and can spread it to others.

MRF is currently helping encourage school pupils to take part in a new government-funded national study that will evaluate whether vaccinating teenagers against MenB could prevent them carrying and spreading the infection to others, thus potentially protecting the whole population.

Findings from this research will help to show whether the MenB vaccine should be available for teenagers on the NHS too.

A study at the University of Bristol, funded by MRF, is almost completed, investigating new sampling techniques and providing key evidence to show how best to carry out the government’s large-scale study.

Decisions about vaccines are made at a government level, and the public’s views are not currently taken into account. Another MRF-funded study has begun looking into how people in the UK value the benefits from different childhood vaccines. In the future, this could enable public preferences to be considered in policy decisions on vaccines, potentially prioritising vaccines which prevent rare, severe childhood illness.

Vinny Smith, Chief Executive of MRF said, “Meningococcal B infection has for decades been the single largest cause of meningitis and septicaemia in the UK and we want to see more people protected through vaccination. The cost effectiveness framework currently used to decide whether a vaccine is available on the NHS is still deeply unfair to vaccines that prevent uncommon, severe childhood illness. We will continue to fight for fairness on behalf of the families and individuals who have been affected by the disease, and the more than 800,000 people who signed the petition in 2016. We’ll continue to support vital research to ensure greater protection for everyone in the UK.”

*The figure represents the numbers of cases (not deaths) of MenB disease we would expect to see in children under the age of 5 and vaccine ineligible (over 5 months old) when the MenB vaccination programme began (in Sept 2015) until they reach 5 years of age. Cases are counted until the last of this vaccine ineligible group reach age 5 (April 2020). Data is based on age-specific incidence of MenB for the epidemiological year 2014/15.