A frightened public scares me: How empathy and fear can distort health policy

As some of you may be aware, I’m a psychologist who studies public perceptions towards vaccination. I’m not involved in the hard (squishy) science of how the vaccines are made, or even in the science related to their safety and efficacy, instead I study how people feel about vaccination, a related precursor to how they act in relation to vaccination. ^{Title image credit Max Pixel}

The last three years have been a particularly fascinating time to move into the field of infectious diseases, especially since I’ve had the privilege of being based at the London School of Hygiene and Tropical Medicine (LSHTM), with its unique global focus on public health. I started my time here during the tail end of the West African Ebola outbreak, saw the explosion of and response to the Zika epidemic, and am now watching dangerously high levels of measles spread across Europe. Each health threat is unique in its complexity when it comes to the interventions needed to bring them under control, however, there is often a similar underlying psychological component to these threats that needs to be overcome before many health professionals can do their jobs.

That component is fear.

This week I’d like to tell a story about how fear can pull us apart as a society, creating an environment where somehow everyone is right, but nobody wins.

Meningitis and the UK

In the summer of 2015, the UK launched two new vaccination programmes. One aimed to prevent babies developing Meningococcal B disease (MenB) and the other aimed to boost immunity in adolescence for Meningococcal A, C, W & Y ¹.

Meningococcal diseases have always proved particularly challenging for immunology. Being bacterial in nature and numerous in strains (thirteen in total, however MenA, B, C, W, X & Y are the most common), developing vaccinations that are not only safe and effective, but also cost-effective to a level where they can be provided for free on the NHS, has proven difficult ¹.

While non-symptomatic in some people, and thankfully not overly infectious (unlike say, influenza), infection can lead to the development of meningitis, the inflammation of the membranes that surround and protect the brain and spinal cord, and septicaemia (blood poisoning) ². Meningitis has always been a great source of concern for many parents in the UK, as it represents one of the last truly life-threatening infectious diseases without an adequate mechanism for prevention. As such, the addition of the MenB vaccine to the routine childhood vaccination schedule, in particular, was universally welcomed, by parents and health care professionals alike ³.

In the UK we have a particularly strong vaccination programme due, in part, due to a health system that places a great deal of value on the cost-effectiveness of disease prevention. In 1999 we were one of the first countries to introduce an immunisation for MenC (contained within the HibMenC vaccine), and in 2015 we were the first to launch a nationwide MenB immunisation campaign ¹. The graph below indicates the effectiveness of the MenC campaign and also demonstrates why MenB was next on the list.

^{Number of cases of the five most common meningococcal diseases in England & Wales. Image reproduced from Ladhani et al 2016}

In 2015, after successful price negotiations with the vaccine developer, a Meningococcal B vaccination campaign from the NHS became a cost-effective option for the first time. The vaccine was added to the standard childhood vaccination schedule, whereby it was recommended that all children born after July 2015 receive three doses of the new MenB vaccine (at 2, 4 and 12 months old).

The graph below indicates why this age group would benefit the most from immunisation.

^{Number of cases over a 10 year period by age group in England & Wales. Image reproduced from Ladhani et al 2016}

Side note: This graph also indicates an uptick of meningococcal disease as teenagers go off to university. This is why it’s important to get a booster shot before (or from) uni.

Empathy

On Valentine’s day in 2016, a child by the name of Faye Burdett died of septicaemia caused by a Meningococcal B bacterium infection. The following is a statement from her parents describing the incident:

“Faye was taken to A&E with a rash on her forehead. She was then transferred by South Bank Retrieval Service to Evelina Children's Hospital, where her heart stopped in the ambulance. They revived her and spent hours working on stabilising her […]We were given a one per cent survival chance but she proved them wrong and carried on fighting […] After a few days she seemed to have turned a corner, but the sepsis started to affect her more and the decision of limb removal was made. The extent of removal was massive, full leg amputation and one arm and plastic surgery[...] She was getting tired, her little body consumed by meningitis and sepsis (blood poisoning). We had to make the decision, a massive operation and she may die or we let her go peacefully on her own accord. We decided the latter and then watched our little girl slip away. At 9pm on February 14th she finally fell asleep forever. All this in only 11 days." ⁴

At two years of age, Faye missed out on the new MenB vaccine that would have prevented the disease. After Faye’s death her parents set up a UK parliamentary petition to request that the MenB vaccine be made available to all children up to age 11, and then went public with their story. They also released photographs of Faye which can be seen in the news clip below (warning, contains distressing imagery):

At the same time, a prominent rugby player in the UK, Matt Dawson, revealed that his child had recently suffered from the C strain of meningitis and released the pictures. Thankfully, his child went on to recover from this incident.

These two cases, and the fact that the petition was gaining momentum, brought a lot of media attention to the story.
E.g:

• The Telegraph – 18th Feb 2016 – Parents release heartbreaking image of girl, two, dying of meningitis as 400,000 sign vaccine petition

• The Daily Mail – 17th Feb 2016 Horrific picture shows how meningitis killed toddler in just 11 days: Faye, 2, died after her body was consumed by illness which could have been avoided with a simple jab

• The BBC – 18th Feb 2016 – Matt Dawson reveals 'two weeks of hell' over son's meningitis

The petition eventually garnered over 800, 000 signatures and to date is the third most signed petition since the website’s launch ⁵.

^{Image taken from UK Gov Petition}

Fear

It’s hard to look at the pictures released by Faye’s parents and not think about how you would feel if it were your child who was inflicted with such awful suffering. This is, after all, how empathy operates. In this case, however, the suffering could very well still affect your child. As such, fear is a very logical and rational emotion for parents to feel after seeing such a news story.

When it comes to forming a perception of a particular disease, it’s common for people to make a rough mental calculation on two criteria:

1. Susceptibility:- How likely is it that my child will catch the disease?
2. Severity:- How dangerous would it be if my child caught the disease?

During periods of crises, individual narratives, such as the story of Faye Burdett, demonstrate how dangerous a disease can be while also making it appear a substantially more common occurrence (due in part to the availability heuristic).

It doesn’t take much to move the needle on this, especially when we feel emotionally attached to the story. Therefore, we could imagine that the events of early 2016 would have potentially moved many UK parents’ risk perception profile as such ->

Side note: A while back I talked about the flip side of this issue whereby the success of vaccination campaigns for diseases such as measles has in a way lead to vaccination becoming a victim of its own success

This new risk profile increased demand for the new vaccine (as is often predicted by motivation protection theory). This demand manifested in two behaviours: 1. Signing and supporting the petition, and 2. Paying for the MenB vaccine through private clinics, where the vaccine would often cost £100 -150 per shot.

The latter become very common, with many parents overwhelming their local health practices with requests for the vaccine ⁶. Fears of a national shortage also exacerbated the issue, adding to the demand ⁷.

The outcome

On the 25th of April 2016 the petition was debated by parliament. The proposal to expand the vaccination for all children was rejected, with the response of the parliament primarily focused on the following point:

“…our priority is to protect those children most at risk of MenB, in line with JCVI’s (Joint Committee on Vaccination and Immunisation) recommendation. The NHS budget is a finite resource. It is therefore essential that JCVI’s recommendations are underpinned by evidence of cost-effectiveness. Offering the vaccine outside of JCVI’s advice would not be cost effective, and would not therefore represent a good use of NHS resources which should be used to benefit the health and care of the most people possible.”

For some, a cost-effectiveness argument looked like brushing off the concerns of parents and ignoring their feelings, and in a way, it is. Meningitis is just one of the many childhood diseases that the healthcare system is trying to prevent. When we’re viewing the system from inside we only ever get to see a small slice of the whole picture at any one time. As such, it can be particularly tough to hear that a healthcare system won’t shift heaven and earth to prevent our child from getting sick, but the sad truth of the matter is that all health systems are to an extent zero-sum (yes, even if you have private insurance), doing the best they can with a limited pot of money.

During the hearing, Faye’s father, asked

"What price do you put on a child's life at the end of the day? We have got a vaccine out there. We should be using it."

And he’s entirely right to ask this question, and in turn he is entirely right to be frustrated with the fact that we actually have an answer of this question: Roughly, £20,000 - £30,000 per quality adjusted life year (QALY).

No one won on this day. The public were angry that they we’re not able to get their way and the health care system came off as cold and uncaring.

Why stories like this worry me

It is a necessity for the health systems to be run on rational compassion rather than empathy.

As a public we may want the health system to feel the same empathy that we do when we hear stories such as Faye’s. However, empathy can be a particularly misleading emotion. We are more likely to feel empathy towards people who look and sound like us and we are more likely to feel empathy on the scale of ‘the one’ rather than ‘the many’ ⁸ (for more on this concept see my previous post on the topic). The philosophy of rational compassion ⁹, on the other hand, seeks to understand the suffering of others and make the smartest decision possible to reduce it.

The pressure felt by the petition in this case was intrinsically good; people should care about issues such as this, and the health system should be held responsible when a child dies of any disease here in a high-income country like the UK.

This, however, is a pattern of public behaviour that I’ve see quite often in the last few years - a emotive story given as an argument for a change in public policy. This time it was in support of vaccination, but there is no reason to suggest that next time it won’t be in opposition.

Submitting to public pressure when the evidence does not support their viewpoint is a dangerous path to head down. It’s the kind of thing that can tank a vaccination program, as it did in Japan for the HPV vaccine, but that’s a story for another day.

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References

[1] Ladhani, S. N., Ramsay, M., Borrow, R., Riordan, A., Watson, J. M., & Pollard, A. J. (2016). Enter B and W: two new meningococcal vaccine programmes launched. Archives of disease in childhood, 101(1), 91-95
[2] The Vaccine Knowledge Project: meningococcal disease
[3] The BBC: Meningitis B vaccine deal agreed
[4] Meningitis now: Faye’s story
[5] ITV News: What are the 10 most-signed petitions and what have they achieved?
[6] The BBC: 'Overwhelming' demand for meningitis B vaccine in Wales
[7] The Guardian: Clinics to receive stocks of meningitis B vaccine after global shortage
[8] Slovic, P. (2010). If i look at the mass i will never act: Psychic numbingpsychic numbing and genocidegenocide. In Emotions and risky technologies (pp. 37-59). Springer, Dordrecht.
[9] Vox: The case against empathy

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About me

My name is Richard, I blog under the name of @nonzerosum. I’m a PhD student at the London School of Hygiene and Tropical Medicine. I write mostly on Public Health, Effective Altruism and The Psychology of Vaccine Hesitancy. If you’d like to read more on these topics in the future follow me here on Steemit or on Twitter @RichClarkePsy.

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