MenB

Meningococcal B bacteria (MenB) have been the leading cause of life-threatening meningitis and septicaemia in the UK for decades. This is why we have focused so much of our funding on research into MenB prevention.

MenB kills 1 in 10 people affected and leaves a further third with long lasting effects, some as serious as amputations, brain damage and hearing loss.

Repeated UK Department of Health surveys have identified meningitis as the disease most feared by parents.

A MenB vaccine, Bexsero ®, was finally licensed in Europe in January 2013. The JCVI (Joint Committee on Vaccination and Immunisation) initially rejected the vaccine on cost effectiveness grounds but invited comment from stakeholders, an opportunity we couldn’t miss.

After taking into account the new evidence they received from MRF and other stakeholders we were very pleased that the JCVI recommended the vaccine for routine use in 2, 4 and 12 month olds in March 2014. But months later we are still waiting to hear when babies will be immunised on the NHS.

The vaccine is available privately but the price is too high for many cash-strapped families.

We also remain concerned that there is no recommendation for teenagers, the second highest ‘at risk’ group, to be routinely vaccinated. Vaccinating this age group has the potential to protect the wider population because they are key to transmission and spread.



A vaccine for MenB

It has taken years of research to develop a MenB vaccine, but in March 2014 a vaccine was recommended for routine use in babies aged 2, 4 and 12 months by UK government advisors, the Joint Committee on Vaccination and Immunisation (JCVI).

This was a major step forward. Our analysis provided crucial evidence to counter the JCVI’s initial conclusion that the vaccine was unlikely to be cost effective. Our members who took part in a study about the family impact of meningitis and septicaemia gave compelling evidence which was a key component of our response.

Your support has been crucial. Thank you for enabling us to keep the issue high on the political agenda by signing petitions calling for the introduction of the vaccine. Two petitions were delivered to Downing Street totalling more than 50,000 signatures to which Health Secretary Jeremy Hunt personally responded.

We would also like to thank the 330+ leading clinicians who supported a letter to Mr Hunt we organised, led by Dr Simon Nadel, and published in the Times.

However, after the vaccine recommendation in March, negotiations with the manufacturer began in July, and are still inconclusive, leading us to believe they have stalled.

Throughout the process we have repeatedly expressed our concerns that cost effectiveness analysis undervalues the impact of this disease.

Even now, as price negotiations continue, our genome library is providing new evidence which supports increased value of the MenB vaccine to UK children and increases the urgency for its introduction. A particularly deadly strain of MenW, identified by our genome library as ST-11, is on the rise and the MenB vaccine would protect against it.

We need to keep the pressure up for the introduction of the MenB vaccine in the UK.

Many of you have already paid a very high price and before others succumb to MenB - a devastating yet preventable disease - we are pushing for price negotiations be concluded swiftly so that the vaccine can be offered to UK infants without delay and, in November, we wrote to Mr Hunt expressing our concerns about the delay.
Malawian waiting room

Does cost effectiveness underestimate the impact of meningitis?

We believe that the cost effectiveness framework that the JCVI have to work with is unfair for the evaluation of vaccines that prevent rare and serious illness in children.

Find out more

Why has it been so difficult to develop a MenB vaccine?

Unlike other bacteria which cause meningitis and speticaemia, the sugar coat of MenB bacteria does not trigger an immune response, because it looks like developing human brain cells.

This means that the immune system does not recognise it as a foreign invader, and this protects it from attack. So using the sugar coat just does not work for MenB vaccine development.

The search for a MenB vaccine has had to focus on other elements of the surface of MenB bacteria but it has been very difficult to find elements which are both ‘visible’ to the immune system and present in every MenB strain.

Even elements that are usually present are extremely variable, so the immune response against a vaccine made from one kind of MenB may not be capable of killing all the different MenB strains.

The journey of a new vaccine

From research to implementation. It's takes many years for a vaccine to be available.

Find out why
Malawian waiting room

The unfolding MenB story

How our research has contributed to the development of a MenB vaccine

We've invested £17m in over 140 research projects since 1989, many of them contributing to MenB vaccine development.

Find out more

MenB by numbers

  • 1761 average cases of MenB in UK per year
  • 10% of survivors will have a major disability including amputations, brain damage and hearing loss
  • 33% of survivors will have minor deficits including psychological disorders & reduced IQ
  • 7500 people, including over 5000 babies & toddlers, took part in clinical trials
  • 73% in UK and 78% in Europe predicted coverage of new MenB vaccine
  • 22 years since the first meningitis vaccine introduced – Hib 1992
Vaccination

Men B vaccine. Bexsero - The facts

Your questions about the MenB vaccine answered

Read our in-depth Q and A about the vaccine

MenB - the human cost

Diana Man
Paralympics reporter and keen equestrian Diana, is 30 years old and building a new life without her lower legs, her fingers and with epilepsy. A former record-breaking hurdler, she became ill in November 2007 but refuses to let her disabilities hold her back. “My life has changed a great deal, but I have learned to manage just like anyone else. The journey I have been through, and many of the people I have met, have taught me a lot about myself. There is always someone worse off.”

Read Diana's story in full

Harry Mills
Harry was just 11 years old when he died in April 2007 and since then his family and friends have raised over £100,000 for our charity, specifically for research into MenB. His parents Judi and Richard say: “Harry always had a beaming smile on his face and limitless enthusiasm for sport and life itself. He woke feeling unwell but with no obvious symptoms. We just thought it was a bug. By evening we even thought he was well enough to return to school the following day. It was not to be. Harry's short life was extinguished in a single day.”

Read Harry's story in full

Tilly Lockey
Tilly was 15 months old when she was misdiagnosed with an ear infection in January 2007. She was supposed to be “as right as rain in 36 hours” but was soon fighting for her life. She ended up having both hands amputated. Her toes dropped off at home. Mum Sarah says: “I cried and cried thinking 'how is she going to get through life without hands?’ We have watched our baby girl in so much pain and be so brave. She truly is an inspiration to everyone she meets.”

Sarah Lockey talks to Meningitis Research Foundation about how having amputations as a result of meningococcal septicaemia has affected her daughter's life


David Ellson
David Ellson, from Northern Ireland, died of MenB in February 2002 when he was two-and-a-half years old. His mother Maureen says: “The doctor told us he was very ill and they had struggled to stabilise him after the transfer. Even at that point I couldn't believe he was going to die. I didn't think it was possible that something so bad could happen to our family, we were good people and surely bad things don't happen to good people.”


Read Maureen's story in full


Counting the Cost of Meningitis

Robbie Jones is a MenB survivor. He lost both legs to the disease aged 23 months in 2008. His mum Gill backed our campaign to highlight the true cost of meningitis – which we estimate at around £3m for the lifelong care of each person seriously disabled.

With Robbie, she gathered hundreds of names for our Counting the Cost petition and they both helped deliver the petition of nearly 17,000 names to No 10 Downing Street on 17 September: “Robbie’s illness has been our worst nightmare,” says Gill. “Which is why we committed ourselves to collecting signatures. We want to ensure everyone is aware of the dangers of the disease and that every child is protected against all types of meningitis and septicaemia.”

Find out more about Counting the Cost