A disease that destroys families... and the long wait for a vaccine to cut its toll

A few weeks ago, Lesley Leaver heard details of a medical breakthrough she had been told would never happen in her lifetime. A vaccine to protect against meningitis B – the disease which killed her husband – had not only been developed, rigorously tested and proved to work, but it had also been licensed for use in the UK.

It was, she says, “unbelievable news,” but any celebrations were tempered by the knowledge that unless the jab is given the go ahead, the years of hard work will have been for nothing.

A decision as to whether the vaccine will be included as part of the routine childhood immunisation schedule, alongside jabs which protect against 
measles and whooping won’t be made until June.

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However, with the Government still talking up its austerity measures, there are fears the vaccine could been deemed simply too costly and the decision indefinitely delayed.

“It’s amazing that here we have a vaccine that could save thousands of lives, but it’s no use sat in a laboratory,” says Lesley.

“There are various procedures which rightly have to be gone through and we have to make 
sure that it is compatible with the other vaccines already on 
the schedule. That’s absolutely how it should be, but the 
thought it might not be introduced simply because of cost is 
incredibly galling.”

Lesley, from Guiseley, Leeds, is adding her weight to the Meningitis B: Beat It Now campaign and like all those whose lives have been touched by the disease, she knows how quickly it can take hold.

New Year’s Day, 13 years ago, she and her husband, Kevin, went walking as they often did on Ilkley Moor.

With their eldest daughter, Claire, in her first year at university and their youngest, Laura, preparing to sit her GCSES that summer, the couple began talking of their plans for the future, when both girls had flown the nest.

Less than a week later, Kevin, who was deputy head of St Mary’s School in Menston, where he had taught for 28 years was admitted to hospital suffering from meningococcal septicaemia. Five hours later the 50-year-old was dead.

“We’d both felt a bit under the weather, but that year there had been an awful lot of flu going around, so we didn’t think 
much of it,” says Lesley, who 
like her husband, worked as a teacher.

“I was aware of meningitis and just a few weeks before I’d done the tumbler test on my daughter, but with Kevin everything happened so quickly.

“School always came first and I can’t remember him ever having a day off sick, so when he said he had agonising stomach pains I knew it was serious. The first doctor who saw Kevin said he thought he was suffering from an allergic reaction, but I knew he hadn’t eaten anything which could have caused such awful symptoms.

“By the time he was taken into hospital he was desperately ill and watching him deteriorate over such a short time was heartbreaking.

“On January 7, 2000, I lost the love of my life, my daughters lost a father who always had time for them and a school lost a very special teacher.

“Kevin never got to see his daughter walk down the aisle and he never saw his grandson take his first steps. When I found out about the vaccine I cried and I honestly believe that the government has a moral obligation to protect the British public from this awful disease.”

Meningitis B is the most common form of the disease in the UK and affects around 1,870 people each year.

Every week, six people die of the disease and while meningitis B shows no regard for age, gender or background, the majority of deaths are among children. Of those that do survive, one in three are left with a permanent disability and those campaigning for the new vaccine say history shows immunisation works.

In 1999, when cases of meningitis C were at their height, a jab was introduced. It is now widely given to babies in the first year of their life and has led to a marked fall in the number of cases.

Supporters of the meningitis B vaccine believe the Bexsero jab could prove even more significant. Produced by the pharmaceutical giant Novartis, studies have shown it will protect against 73 per cent of strains and those behind Beat It Now are calling on the Government to ensure a deal is struck.

Steve Dayman, who founded Meningitis UK following the death of his 14-month-old son Spencer in 1982, believes the vaccine is the most important development since he began the charity 30 years ago.

“This vaccine has been tried 
and tested in trials involving thousands of children and it works,” he says. “It is no exaggeration to say it is the biggest medical breakthrough since the introduction of the polio vaccine in the mid 1950s.

“In addition to the lives that are lost each year, those that do survive often have to live with horrendous disabilities from blindness to permanent brain damage.

“Looking after and caring for those people costs the NHS a substantial amount of money, 
but I also dearly hope that those who have the responsibility of deciding whether this vaccine is given the green light also take into account the emotional cost of meningitis.”

Thirty years on from losing 
his own son, Steve admits that much more is known about meningitis, but in terms of treating the disease most avenues have already been explored. Immunisation, he says, is the next logical step.

“When Spencer became ill, 
we were in a very different 
world. When our bright, 
bubbly little boy first became ill we had a visit from a GP at home. As precaution he gave us a note and said we should take Spencer to hospital. There was no real sense 
of urgency and we sat in the waiting room of A&E along with everyone else for two hours. Those two hours when he wasn’t being treated in hindsight were crucial.

“I have spoken to lots of doctors over 
the years and all of 
them have said that in terms of treatment there is really nowhere else to go when it comes to meningitis B. They have exhausted all possibilities and the only thing 
the can be done is to put a patient into aggressive intensive care and for the following 48 hours hope for the best. When it gets hold, it is such a virulent disease that it has to be a case of prevention is better than cure.”

The Joint Committee on Vaccination and Immunisation, will advise the Government on whether to adopt the meningitis B jab, but the committee won’t comment on whether it is likely to recommend Bexsero.

“The worry is that the wheels of Government won’t turn quickly enough,” says Steve. “The meningitis B vaccine must be introduced into the immunisation schedule as soon as possible - it will save thousands of lives and spare families so much suffering. Any delay in giving people the vaccine means lives lost.

“When the last major 
meningitis vaccine was licenced it took a further five years to be introduced and we cannot wait that long again. I know there 
will be financial implications, 
but what price do you put on a human life?”

Through Beat It Now, Meningitis UK is Seeking clarification as to the exact date when a decision will be made and in the meantime its members are stepping up its campaign and calling on the public to put pressure on Government ministers.

“In the dark days that followed Kevin’s day I did feel a terrible guilt and spent many hours thinking that there must have 
been something that I could have done differently,” says Lesley, who gave up teaching shortly 
after losing her husband. “I honestly didn’t realise just how many people were suffering just like we were.

“Over the years I’ve listened to 
so many heartbreaking stories about the devastating impact meningitis has had on the lives 
or ordinary families. Now we are 
in hair’s breath of getting this vaccine and we have to make sure the opportunity does not 
slip away.”