Meningitis B Vaccine

Ben Howlett Excerpts

Monday 25th April 2016 Westminster Hall

[Ben Howlett (Bath) (Con)]

I beg to move,

That this House has considered e-petition 108072 relating to the meningitis B vaccine.

As ever, it is a great pleasure to serve under your chairmanship, Mr Pritchard, and it is also a pleasure to see such a high level of interest in this debate from colleagues from all parts of the House. The petition that sparked this debate gathered over 820,000 signatures and received widespread media attention. Someone from every one of our 650 constituencies signed this petition; that shows just how horrifying meningitis B is, and gives a very strong indication of the level of public support for efforts to eradicate this disease.

Before today’s debate, the Petitions Committee and the Health Committee undertook joint oral evidence sessions, during which we heard from families who have been affected by meningitis B, as well as from charities and experts in the field. Some of those families are here today; I thank them for taking the time to share their stories with us. I also thank the charities that came along to the evidence sessions. The evidence that we heard will undoubtedly inform today’s very important debate.

Meningitis B is an evil disease that kills or maims hundreds of children in the UK every year. Finding out that their child has contracted this dreadful disease is clearly one of the worst things that can ever happen to a parent. We need to eradicate it as soon as possible, and I hope that this debate and the attention that it brings to the topic will lead to a new action plan from the Government.

[Nick Thomas-Symonds (Torfaen) (Lab)]

The hon. Gentleman has talked about the need for action soon. I got a sense of urgency from the constituents who contacted me. Does he agree that that sense of urgency needs to be reflected by the Joint Committee on Vaccination and Immunisation when reviewing the position with regard to meningitis B?

[Ben Howlett]

I thank the hon. Gentleman for his intervention; as ever, he is fast off the mark in intervening. I agree that urgent action is needed and I will come on to give the reasons why. From the evidence that we heard, there is, in effect, a two-year window for a vaccine’s shelf life, so I hope that when the Minister sums up, she will make that case clear. Previous campaigns on this issue have brought about change, and I can only hope that this campaign has gathered enough momentum to follow in their path.

Before I turn to the evidence that we heard in the joint sessions, I will mention a constituent of mine from Bath. I am sure that many hon. Members here have seen for themselves, as I have, the effects of this awful disease and what it does to those who suffer from it. One case that has particularly moved me is that of my constituent, Harmonie-Rose. She contracted meningitis B when she was just 10 months old. Just a few days after she had taken her first steps, she was taken into hospital with one of the worst cases of the disease that her doctors had ever seen. As she battled to survive, the toxins in her body spread to her limbs. The disease attacked and destroyed the tissue in her arms and legs, meaning that they had to be amputated in order to save her life.

Although Harmonie-Rose eventually recovered, she now lives as a quadruple amputee. Harmonie-Rose is a lovely, bubbly young child, living her life to the absolute full. She is beginning to adapt to her prosthetics; one day, she will have the freedom to move around that we all enjoy.

[Mr Jim Cunningham (Coventry South) (Lab)]

I congratulate the hon. Gentleman on securing this debate, and I also congratulate all the people who signed the petition. While this debate in Parliament is very timely, meningitis has in fact been around for a very long time. A constituent wrote to me to say that they were having difficulty getting the vaccination. More importantly, if they had gone private, it could have cost them something like £700, which is very expensive for any family, for any treatment. I wonder what the hon. Gentleman thinks about that.

[Ben Howlett]

I thank the hon. Gentleman for his intervention. He is quite right to pick up on the fact that the long-term costs to families need to be taken into account when the JCVI makes its decision about whether to extend vaccinations; I will come on to that issue later. It is quite clear that without the support of many of our constituents—those who fundraise and do so much work to help support families in need—those families would be in a much more challenging situation.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

I commend the hon. Gentleman on leading this debate. He gave the very powerful constituency example of Harmonie-Rose. We heard evidence from the parents of Faye Burdett, who made it very clear how fast the disease can strike, and how vital it is that meningitis is treated as quickly as possible to minimise damage. Does the hon. Gentleman agree that, as we heard in evidence, children under the age of five have difficulty communicating the symptoms that they are experiencing, and that is one of the factors that should be taken into account very carefully when considering extending the vaccination programme to those in that age group? They cannot communicate, which delays the delivery of the medical treatment that they so vitally need.

[Ben Howlett]

I thank the hon. Lady for her intervention, and I agree. Without giving away what I am about to say, I think that the evidence is quite clear on that, and I hope that the JCVI will look at that in due course. The fact is that Harmonie-Rose and many other children see their lives dramatically changed, or even cut short, by this tragic and awful disease, and it is time that we did something about it, here and now.

The petition that led to the debate was started by Lee Booth, who was told that his eight-month-old child was too old to qualify for the meningitis B vaccine. Lee was quite rightly uneasy about that, as the group most susceptible to contracting the disease are babies under the age of one. I am sure that we were all pleased when the Government made the unprecedented announcement that from September 2015 all newborn babies would be given the vaccine, making the UK the first country in the world to make that provision.

[Michael Dugher (Barnsley East) (Lab)]

On behalf of colleagues from all parties in the House, I thank the hon. Gentleman for the eloquent and passionate way that he is leading this important debate. He is aware of the heartbreaking case of Mia Barton, who tragically passed away last month after contracting meningitis B. Her courageous parents, my constituents Rebecca Barton and Matthew Bright, are campaigning incredibly hard, even in the midst of such awful grief. Does the hon. Gentleman agree that, at the very least, the JCVI should be open to reviewing its recommendations to the Government, and that the tragic death of Mia Barton underlines the need to look again at the age requirement for the national vaccination programme?

[Ben Howlett]

I thank the hon. Gentleman for his intervention, and my condolences go to Mia’s family, because obviously anybody who is lost to this tragic disease is a loss overall, and it is horrendous what Mia’s family have had to go through; I have seen that with the family of my own constituent, and as MPs no doubt we have all seen that. There is a question around age, and I will come on to that shortly. Like Mia’s family, Lee Booth is calling for the Government to extend vaccinations up to the age of 11, and I think that we need to review some of the evidence today.

[Geoffrey Clifton-Brown (The Cotswolds) (Con)]

I congratulate my hon. Friend on leading this very important debate. I have been involved in this campaign for a considerable while. Does he agree that there is not an issue about the safety of the drug, because it is very safe—we know that because it has been used very safely on students in American universities—and that it is simply an issue of cost?

[Ben Howlett]

I thank my hon. Friend for his intervention; I am aware of his work in championing this cause, which he has done for a while. I very much hope that the Minister will consider that point when she makes her summation.

Although it is quite difficult for all of us as MPs to say this, throughout this debate we must of course keep at the back of our minds the fact that the NHS has finite resources. Everything that the NHS provides has an element of cost to it, and a life cost-benefit, too. However, along with many other Members, I worry that the long-term benefits of childhood vaccination and the life chances that vaccination can give to so many children are not being considered as much as they should be.

[Mrs Helen Grant (Maidstone and The Weald) (Con)]

I, too, congratulate my hon. Friend on leading this debate, and on speaking so passionately but in a measured way about this awful, awful disease. GlaxoSmithKline reported annual profits of £10.3 billion in 2013. Its website devotes several pages to corporate social responsibility. Does my hon. Friend agree that the company would show real leadership and great responsibility if it was prepared to relax further the price of the Bexsero vaccine?

[Ben Howlett]

I met GlaxoSmithKline and we had a conversation on the issue. There needs to be a long-term conversation in the here and now with GlaxoSmithKline about the pricing of a catch-up programme. We heard an awful lot of evidence about that, and JCVI needs to take it into consideration. As part of that, I lend my support to those campaigning for a full review of the cost-effectiveness methodology for immunisation programmes and procurements, or CEMIPP, its understanding of life benefit, and what it takes into consideration when making a judgment call on life benefit. That has a huge impact on how JCVI makes its decisions. I hope that a review would have a wider benefit for all those children who might be put at risk.

From September 2017, we will start to receive information from the current vaccination programme of babies under the age of one, and we can begin to assess the success of the new approach. In September 2016, we will get early preliminary data on the early introduction of the vaccine. That will hopefully help JCVI readdress its decision on extending the vaccine to those aged up to five. As the UK is the first country to use the meningitis B vaccine, it is understandably difficult to predict its effects when administered on a large scale. The data will be incredibly useful in helping to formulate a plan from September 2017, but it is important to remember that while we sit waiting for the data, children are contracting the disease, with life-changing consequences. Sadly, in some cases they are dying. Families going through that trauma will not be comforted by the fact that from 2017 we will have a better idea of what to do.

It is the opinion of many research organisations that while we wait for the data, we should prioritise protecting the most vulnerable from contracting the disease through a one-off catch-up programme for children under the age of five. They are the age group at the next highest risk of meningitis B infection. That one-off campaign would put many minds at ease and help the future eradication of the disease. The current vaccine only has a two-year shelf life, so it makes sense for the UK to use the vaccines while it can, to catch all those under the age of five. The evidence that we heard showed that the number of cases falls substantially after the age of five. While it is always uncomfortable to set a cut-off age, that would be a sensible one to introduce in the here and now.

At the heart of every successful immunisation campaign is uptake of the offer. Information shows that uptake for the under-ones is strong; that is unsurprising given what the papers are publishing, and the sad stories of families who have suffered the devastating effects of their child contracting the disease. We must ensure that uptake is continually high and does not negatively affect the uptake of any other vaccinations, especially if a one-off catch-up programme is undertaken.

[Catherine McKinnell]

This is an opportune moment to highlight one of the other points that came out of the evidence we took in Committee: while vaccination is vital, public awareness is a huge concern for everyone. It is not only parents who need the best possible awareness of the symptoms; medical staff need it, too. Perhaps that awareness is not high enough. It would be good to hear from the Minister what the Government will do to ensure that public awareness and awareness among medical personnel is the best it can be, to ensure that the disease can be treated as quickly as possible.

[Ben Howlett]

We both heard the evidence that we need to increase awareness of meningitis B. Just because someone has had the vaccination, it does not mean that they are 100% certain not to contract the virus. We have to ensure wider awareness, not just among clinicians, but in nurseries and schools. That will ensure that the issue is higher up their agenda. I have seen some of the highly successful campaigns run by the Department of Health, and I hope we can support the Department in pushing more of those campaigns in the future.

We heard evidence about the importance of vaccinating young children, but Meningitis Now and the Meningitis Research Foundation point out that vaccinating teenagers could be the key to protecting the whole population from meningitis B, knocking out the infection at source before it can spread. That is because teenagers may be responsible for a high proportion of disease carriage. During our evidence sessions, we discussed at length the evidence to back that up. Vinny Smith, the chief executive officer of the Meningitis Research Foundation, explained that the bug lives in the noses and throats of people, particularly teenagers, but it does not live in everybody. The idea is that the key carrier group is targeted with a vaccination campaign that would hopefully protect the most at risk groups.

That targeted immunisation programme could be the solution when it comes to eradicating the disease. However, in-depth research has not yet been done on how effective that would be. It is hoped that the programme would severely reduce contraction of the disease, but it is unclear. What is clear is that a better understanding is at least three years away. We need to get the research process started as quickly as possible. It could benefit those young children who have not been vaccinated by reducing the chances of exposure. It is clearly too soon to advocate the immunisation of all teenagers, given that evidence is still unclear about the effects of immunisation beyond prevention in adolescents. When the research process is under way—I repeat that I hope it starts sooner, rather than later—a short-term option would be to extend the vaccination programme to under-fives who are at a higher risk of contracting the disease.

GlaxoSmithKline, which produces the vaccine, has said that it is prepared to work with the Government to ensure that there are enough vaccines for the catch-up period. The company will be under pressure from other nations looking to focus on their vaccination programmes. The Government need to place an urgent and vocal emphasis on vaccinations, as well as prevention. They would be an important voice in encouraging vaccination producers to have greater confidence in investing in the UK. All the families in the UK who want the reassurance a vaccination would bring would much rather we had a stockpile of vaccinations used in a one-off catch-up programme than for our country to miss out because we were slower on the uptake than our competitors. I hope that the urgency of the discussion is at the forefront of the Minister’s mind.

[Nick Thomas-Symonds]

I think the hon. Gentleman spoke about the benefits of reassurance. Does he agree that it is important that peace of mind is taken into account in evaluating the spreading of the vaccination programme?

[Ben Howlett]

Yes. I do not think JCVI gives as much consideration to peace of mind as it should. From speaking to the parents of Harmonie-Rose and others, I know that that sense of reassurance is in many instances unquantifiable, which makes it difficult for the JCVI to base a decision on peace of mind, but at the end of the day, my opinion, from the evidence we heard in the Committee hearings, is that we need a review of these matters.

As was highlighted repeatedly during the evidence sessions, the exact effect of the vaccine is still unknown, and parents should not ignore any potential signs of the disease just because their child has been immunised. They may still contract the disease, although the chance is much smaller. As ever, early identification is key. The families and experts we heard from stressed the need for strengthened education campaigns highlighting the symptoms of meningitis B, which include a rash that spreads quickly across the body, a high temperature with ice-cold feet and hands, and babies who are agitated and refusing to feed. While it is important that all parents receive that information, it also needs to be targeted at all those with responsibility for children, including childminders, teachers and nurses.

[Mr Jim Cunningham]

One of the things that struck me was that there has always been difficulty negotiating the price of drugs with manufacturers. Has the hon. Gentleman come across any evidence that in this case that could contribute to any delays with progress?

[Ben Howlett]

I have not yet seen that evidence, because we are a couple of stages away from that point. Compared with some of the other long-term battles in this place to get access to particular drugs, the conversations that were had with GlaxoSmithKline when the immunisation programme went up to the age of one were particularly small. Longer term, there is obviously a wider conversation that we need to have around access to medicines, if we are going into a world where everybody will, effectively, have a rare disease. We know even more now about genetics and the genome. The system is not set up to help the 68 million people in our country to access medicines in a quick way. That system needs to be created, and the work that the Under-Secretary of State for Life Sciences is doing is leading the way on that. I call on all Members in the Chamber to help speed up that process, and to put pressure on the Government to come up with an accelerated access to medicines review as quickly as possible to help the people that the hon. Member for Coventry South (Mr Cunningham) identified.

While we decide what needs to be done, we need to be thankful to the public for raising so much money to support the families living with the reality of a child having meningitis B, and thankful to the charities that provide them with financial, emotional and practical support. Only yesterday, some of the London marathon runners, including seven Members of Parliament, raised thousands of pounds to support such families. Such efforts are vital to providing support, and I know that families are thankful for those efforts. I am tremendously proud to represent a constituency where thousands of pounds have been donated and fundraised for Harmonie-Rose. I know the family are immensely grateful for all the support.

In summary, I am honoured to have been able to open today’s debate on behalf of the Petitions Committee. It is unsurprising that this campaign has gathered so much attention following the sad stories in the media. I hope that the Government listen to the widespread calls for a change in policy, and I hope that they have a one-off catch-up vaccination programme for those up to the age of five to put parents’ minds at rest while research is conducted into the impact on adolescents and the spread of this horrendous disease.

--- Later in debate ---

[Jane Ellison]

Of course, and I have tried to reflect on that important point. Nevertheless, raising awareness and ensuring the quick treatment of meningitis will always remain very important for that reason, so parents and healthcare professionals need to remain alert to the signs and symptoms of the disease, as was brought out in the moving speech by my hon. Friend the Member for Bury North (Mr Nuttall) when he talked about the attentiveness of Charlie’s mum as she monitored his symptoms.

Let me tell the House a little about what we are doing to raise awareness among healthcare professionals. Public Health England produces a range of training materials for immunisers, which includes information on the various programmes. It also collaborates with the charities in this area to support their work to improve healthcare worker knowledge, including through the development and distribution of resources aimed at each type of healthcare professional. It runs teaching and training events, and cascades briefing notes through networks. NHS England also does work to provide tools to help GPs to recognise meningitis. A great deal of work is going on in this area, but of course there is always a need to do more.

I turn to the issue of raising awareness among parents, because that is where we can do more. I announce to the House today that I have asked Public Health England to develop a national awareness campaign that will focus on the dangerous infections that parents worry about the most, including meningitis, septicaemia and sepsis. The campaign will focus on the symptoms that parents need to look out for. To get that right, we will work with the appropriate experts and charities, and of course more details will be available in due course. I will look to keep the relevant Committees up to date with that, but it is my intention that this information should be rolled out before the peak of cases in the winter.

[Ben Howlett]

Will the Minister also confirm that she will work with the Department for Education on helping those in the teaching professions and nurseries to identify the different conditions, so that we break down the silo type of response that sometimes prevents these sorts of conversations from being had more freely?

[Jane Ellison]

I have only had initial conversations with Public Health England about the shape of the campaign, but I can assure my hon. Friend that the officials and the other people working on this campaign will look very carefully at what has been said today, and at some of the ideas that hon. Friends and other Members have put forward, and of course they will take all those points into account.

--- Later in debate ---

[Ben Howlett]

I thank you, Mr Davies, and Mr Pritchard, who was here earlier, for chairing the debate. There have been incredibly powerful speeches today. I have seen this place at its best many times here in Westminster Hall during debates on petitions. I thank every Member here for contributing and for listening to the 820,000-plus people across the UK who care deeply about the issue. It shows that we as parliamentarians can really connect with our constituents on issues they care passionately about. I lend my thanks to the petitioners, the families, the charities and all those who gave evidence to the joint Health Committee and Petitions Committee sittings for their time, their passion, their work around our country and their fundraising for little children, including little girls like Harmonie-Rose in my constituency and many thousands of others in the rest of the UK.

I thank the Minister for her response. I was pleased to hear about the public awareness campaign that she has just announced to the House. It is absolutely right, as my hon. Friend the Member for Totnes (Dr Wollaston) said, that the decision-making process is clinically led. Sometimes it is rather irritating when politicians come in and say, “We know best.” Sometimes we do not know best, as my brother who is a doctor tells me many a time—although he is a junior doctor, but we will not get into that debate right now.

We rightly have a responsibility to hold the Government to account. Given what the Minister has just announced, I was pleased to hear her wish to report back to the Petitions Committee and the Health Committee on the reports that will be produced later in the summer. I look forward to seeing what reforms to CEMIPP will be discussed—as someone who is thoroughly dyslexic, with luck I will not end up having to spell that.

I thank all those who have taken part in the debate. This is not the end of the journey. Once we get to debate a particular subject in this Chamber, that is not the end of the road. There is no doubt that this is a long-term conversation that needs to be had. Any life lost is one too many. I thank you, Mr Davies, for chairing the debate.

Question put and agreed to.

Resolved,

That this House has considered e-petition 108072 relating to the meningitis B vaccine.