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

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A frightened public scares me: How empathy and fear can distort health policy
<center>https://cdn.steemitimages.com/DQmShQkBERcUiCecSZtEqFmtkSEyzMQKPqGpHDufN9G9TPV/image.png</center>

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 <b>feel</b> about vaccination, a related precursor to how they <b>act</b> in relation to vaccination. <sup>Title image credit [Max Pixel](https://www.maxpixel.net/Personal-Crowd-Silhouettes-Group-Of-People-Human-2045499)</sup> 

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 <b>fear</b>. 

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 <sup>[1](https://adc.bmj.com/content/101/1/91)</sup>. 

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 <sup>[1](https://adc.bmj.com/content/101/1/91)</sup>.  

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) <sup>[2](http://vk.ovg.ox.ac.uk/meningococcal-disease)</sup>. 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 <sup>[3](https://www.bbc.co.uk/news/health-32101921)</sup>.  

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 <sup>[1](https://adc.bmj.com/content/101/1/91)</sup>. The graph below indicates the effectiveness of the MenC campaign and also demonstrates why MenB was next on the list.    

<center>https://cdn.steemitimages.com/DQmWwPFiAXdtxsPLWen9rf8VmoWXEJBmi2ZizqWyG9fiMpo/image.png</center>

<center><sup>Number of cases of the five most common meningococcal diseases in England & Wales. Image reproduced from [Ladhani et al 2016](https://adc.bmj.com/content/101/1/91)</sup></center>  

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.

<center>https://cdn.steemitimages.com/DQmYcYSmBx6KXRDEU2Vfaa2ZK8GXGxKmwokiaUSbS32DBcE/image.png</center>

<center><sup>Number of cases over a 10 year period by age group in England & Wales. Image reproduced from [Ladhani et al 2016](https://adc.bmj.com/content/101/1/91)</sup></center>

_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." <sup>[4](https://www.meningitisnow.org/support-us/news-centre/news-stories/fayes-story/?gclid=CjwKCAjwlejcBRAdEiwAAbj6KQmYrAMDKSOu4v8d3Vpcge4pY7EqWAkcGg7SwWHlgkDmLQGArvQOzRoCeawQAvD_BwE)</sup>

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):     

https://www.youtube.com/watch?v=TOTJS4tFORI

<div class="pull-right"><center><img src="https://cdn.steemitimages.com/DQmQurnTf7XnkC8STUe7pe2U5ZckFzBSPEPuh3f2KfGWEEn/image.png"/><br/>Image credit<em><a href="https://twitter.com/matt9dawson/status/699941674106122240?ref_src=twsrc%5Etfw%7Ctwcamp%5Etweetembed%7Ctwterm%5E699941674106122240&ref_url=https%3A%2F%2Fwww.telegraph.co.uk%2Fnews%2Fcelebritynews%2F12161473%2FMatt-Dawson-reveals-toddler-son-has-beaten-meningitis.html">@matt9dawson</a></em></center></div>

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](https://www.telegraph.co.uk/news/health/news/12161133/Heartbreaking-image-Faye-Burdett-two-dying-of-meningitis-parents-vaccine-campaign.html) 

•	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](https://www.dailymail.co.uk/health/article-3450700/Meningitis-ravaged-toddler-11-days-Faye-2-died-body-consumed-illness-avoided-simple-jab.html)


•	The BBC – 18th Feb 2016 – [Matt Dawson reveals 'two weeks of hell' over son's meningitis](https://www.bbc.co.uk/news/uk-england-london-35602045) 

The petition eventually garnered over 800, 000 signatures and to date is the third most signed petition since the website’s launch <sup>[5](http://www.itv.com/news/2017-01-31/petitions-what-are-the-10-most-signed-and-what-have-they-achieved/)</sup>.  

<center>https://cdn.steemitimages.com/DQmWnp72H8ebFstBkkY49ucF8QcW2enr7tfi8WPu6yQcD9q/image.png</center>

<center><sup>Image taken from [UK Gov Petition](https://petition.parliament.uk/archived/petitions/108072)</sup></center>  

## 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.	<b>Susceptibility</b>:- How likely is it that my child will catch the disease? 
2.	<b>Severity</b>:- 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](https://en.wikipedia.org/wiki/Availability_heuristic)). 

<div class="pull-right"><center><img src="https://cdn.steemitimages.com/DQmVdyagbZJ9scMcQmR3SS5Wu9WPn6hDjmjYbYHyq6mCj4z/image.png"/><br/>Image created for post</center></div>

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](https://steemit.com/steemstem/@nonzerosum/are-vaccines-victims-of-their-own-success)_

This new risk profile increased demand for the new vaccine (as is often predicted by [motivation protection theory](https://en.wikipedia.org/wiki/Protection_motivation_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 <sup>[6](https://www.bbc.co.uk/news/uk-wales-35658871)</sup>. Fears of a national shortage also exacerbated the issue, adding to the demand <sup>[7](https://www.theguardian.com/society/2016/may/16/clinics-stocks-meningitis-b-vaccine-bexsero-after-global-shortage)</sup>.             

## The outcome

On the 25th of April 2016 the petition was [debated by parliament](https://petition.parliament.uk/archived/petitions/108072). 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](https://en.wikipedia.org/wiki/Zero-sum_game) (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)](https://www.nice.org.uk/news/blog/carrying-nice-over-the-threshold). 

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 <b>rational compassion</b> rather than <b>empathy</b>. 

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’ <sup>[8](https://link.springer.com/chapter/10.1007/978-90-481-8647-1_3)</sup> (for more on this concept see [my previous post on the topic](https://steemit.com/steemstem/@nonzerosum/world-malaria-day-if-i-look-at-the-many-i-will-never-act)). The philosophy of rational compassion <sup>[9](https://www.vox.com/conversations/2017/1/19/14266230/empathy-morality-ethics-psychology-compassion-paul-bloom)</sup>, 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. 

<center>--------------------------------------------</center>

## 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](https://adc.bmj.com/content/101/1/91). Archives of disease in childhood, 101(1), 91-95
[2] The Vaccine Knowledge Project: [meningococcal disease](http://vk.ovg.ox.ac.uk/meningococcal-disease)
[3] The BBC: [Meningitis B vaccine deal agreed](https://www.bbc.co.uk/news/health-32101921)
[4] Meningitis now: [Faye’s story](https://www.meningitisnow.org/support-us/news-centre/news-stories/fayes-story/?gclid=CjwKCAjwlejcBRAdEiwAAbj6KQmYrAMDKSOu4v8d3Vpcge4pY7EqWAkcGg7SwWHlgkDmLQGArvQOzRoCeawQAvD_BwE)
[5] ITV News: [What are the 10 most-signed petitions and what have they achieved?](http://www.itv.com/news/2017-01-31/petitions-what-are-the-10-most-signed-and-what-have-they-achieved/)
[6] The BBC: ['Overwhelming' demand for meningitis B vaccine in Wales](https://www.bbc.co.uk/news/uk-wales-35658871)
[7] The Guardian: [Clinics to receive stocks of meningitis B vaccine after global shortage](https://www.theguardian.com/society/2016/may/16/clinics-stocks-meningitis-b-vaccine-bexsero-after-global-shortage)
[8] Slovic, P. (2010). [If i look at the mass i will never act: Psychic numbingpsychic numbing and genocidegenocide](https://link.springer.com/chapter/10.1007/978-90-481-8647-1_3). In Emotions and risky technologies (pp. 37-59). Springer, Dordrecht.
[9] Vox: [The case against empathy](https://www.vox.com/conversations/2017/1/19/14266230/empathy-morality-ethics-psychology-compassion-paul-bloom) 

<center>--------------------------------------------</center>

## About me

My name is Richard, I blog under the name of [@nonzerosum](https://steemit.com/@nonzerosum). I’m a PhD student at the London School of Hygiene and Tropical Medicine. I write mostly on [Public Health](https://steemit.com/steemstem/@nonzerosum/redefining-health-for-the-21st-century), [Effective Altruism](https://steemit.com/effectivealtruism/@nonzerosum/is-the-play-pump-the-answer-to-the-world-s-clean-water-problems) and [The Psychology of Vaccine Hesitancy]( https://steemit.com/steemstem/@nonzerosum/are-vaccines-victims-of-their-own-success). If you’d like to read more on these topics in the future follow me here on Steemit or on Twitter [@RichClarkePsy](https://twitter.com/RichClarkePsy).

I'm a proud member of @SteemSTEM and you should be too! Find more information about their fine work [here](https://steemit.com/steemstem/@steemstem/steemstem-summer-2018-project-update)

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@abigail-dantes · (edited)
Yet another fascinating post @nonzerosum :)

As I read this one so many things came across my thoughts. With one of them being the Zika epidemic my country (Brazil) underwent in 2015/2016 (which you also brought up here). Fear was palpable, especially among low-income families. 

And, similarly to what happened in the UK, that was an event that widened even more the gap that separates the general public and the government/health system. As news featuring babies born with brain damage were widespread heightening people's level of empathy, causing them to form opinions on that basis. 

On putting themselves on those babies' parents shoes, the public expected the government to provide everything from diapers to special facilities for those children. It is definitely a delicate one.

Well, like Bloom so rightly said:

<blockquote>empathy will have to yield to reason if humanity is to have a future</blockquote>

which, of course, doesn't take away the fact that our hearts and thoughts will always go to those families.

All the best to you :D
👍  
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@nonzerosum ·
Yes, I have a Brazilian colleague at the moment that is working on the spread of fear during the Zika epidemic (which sadly [looks to bounce back soon](https://www.telegraph.co.uk/news/0/world-must-prepare-return-zika-scientists-warn/)). The fear is understandable, if pregnant, however whats strange is the paranoia and conspiracy theories that have sprung up around it. Very delicate like you say. 

Are you still living in Brazil? I've some friends in Sao Paulo, I really should try and make it out there sometime soon. It sounds like your countries going through some 'exciting' changes at the moment. So sorry to hear about your museum in Rio that burnt down, such an unnecessary loss.
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@abigail-dantes · (edited)
No, I left Brazil 15 years ago. But, my whole family is still there. I am currently living in Portugal with my husband :) You would like Brazil. But, perhaps not São Paulo, which is like a gigantic, chaotic London. It all depends on what you'd like to see/do though &#128522;
👍  
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vote details (1)
@adamada ·
$1.78
I'm also in the health care system and can see what you mean by this. As much as I want to think that each person out there when they make a consent for the general welfare, they are making informed decisions but that's not the reality we live in. Perspective from a non health care provider and a lay person is markedly different especially when you live in a developing nation. 

The healthcare system where I come from sucks and the vaccination programs are taking heat due to anti-vaccine campaigns. There's plenty of people out there that would take advantage of failed vaccinations just to sensationalize it. Anything to make those ratings bling. 

Appealing to empathy is a weapon. One of the best since it causes the manipulated to think they are independently driven and rationality right, even if it's all orchestrated by an outside force.
👍  , ,
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vote details (3)
@utopian-io ·
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@alexs1320 · (edited)
$0.07
I really don't like this modern era where everybody needs to have an opinion about every... single.. topic...

What do you, ordinary ignorant guy, think about: GMO, vaccines, pollution, new drugs, animals, plants, space...

Sometimes I miss the "good old days" when you simply obeyed the rules.
I just don't see the benefits of public opinion concerning every aspect of our lives.
👍  , ,
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vote details (3)
@nonzerosum ·
$2.72
This is what the midpoint looks like I'm afraid. I'm assuming you don't want to live at a time where the ruling elite makes all the decision for you, right? Well with that freedom you have come the freedom others have. We now need to take the next step to where we can all update our world views based on the evidence, a step back is not the solution in my opinion. We're getting there, it's just going to be a bit rocky for a few decades that's all.
👍  , ,
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vote details (3)
@alexs1320 ·
$2.15
I actually want to have the elite, elite in the real sense of that word. Elite science, medicine, urban planning, ecology... I want to have the freedom to choose my future wife, to travel, get the desired education, to choose the pathway of my life. 

Everything else is not a freedom but a pair of jackals and unnecessary, time-consuming task of making countless decisions I simply not competent to make. 

What do I think about powerplants -I don't, I have no clue
Where the bridge should be built and how - I have no idea, don't ask me

Even if I get some calculations, simulations, whatever about the bridge near the nuclear power plant, my decision is very, very easy to form. Give me a single hint - and I will vote for that.
I will certainly not going to examine the problem from all the aspects and make any more informative decision in comparison to the decision of "the elite".

I'm very afraid of "crowd thinking" because during the 90' we have collectively decided to kill each other. It was a brilliant idea. Completely democratic. It was a very rational decision to make at that very moment. 20 years latter - Why we were sooo stupid!?
There were some experts with graphs and calculations, but there were fearmongers who offered free guns. Mmm, free guns, completely logical, because we are going to win in a week or two. 

Problem is that evidence in the head of an expert is very different from the evidence in the head of an ignorant.
👍  , , ,
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vote details (4)
@utopian-io ·
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@babai1995 ·
A contortion is "any takeoff from the perfect of flawless rivalry that in this manner meddles with monetary operators boosting social welfare when they amplify their own". A corresponding compensation pay charge, for example, is distortionary, though a singular amount impose isn't.
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@benfreed ·
Sad 

Posted using [Partiko Android](https://steemit.com/@partiko-android)
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@justtryme90 ·
Well written and informative piece of work @nonzerosum. I have read another of your blogs some time ago where you were discussing a similar topic and I enjoyed that one as well.
👍  
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@nonzerosum ·
$0.29
Thank you @justtryme90, I really appreciate your support!
👍  
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@mathowl ·
My partner just finished her studies at a UK uni. I visited her dormitory already couple of time. I never understood why there where mengitis prevention and recognise symptoms posters in the dormitories. But I guess it has to do with these cases. Thanks for enlightening me. :) 

Posted using [Partiko Android](https://steemit.com/@partiko-android)
👍  
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@nonzerosum ·
$0.29
Yes, that’s been a new focus of the programme in the last few years. No problem, thanks for dropping by!
👍  
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vote details (1)
@naideth ·
I love this platform to find me post like this .. They really add a lot to people's prendisaje, it descocia completly, thank you very much for this quality post .. !! Greetings @nonzerosum
👍  
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@nonzerosum ·
$0.29
Hi @naideth thank you for your kind words of support!
👍  
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@neymarth10 ·
hello @nonzerosum that quality of information that I just read of meningitis did not know it was a disease and not your vaccine and I see the risk of our children of not having the vaccine God has in glory to Faye every day you learn something new thanks for sharing if it was worth reading your post I hope you keep posting @neymarth10
👍  
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@nonzerosum ·
$0.29
Hi @neymarth, thank you for your kind words!
👍  
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@neymarth10 ·
@nonzerosum CONTINUE PUBLISHING BROTHER BECAUSE THERE ARE DISEASES WE DISAGREE AND IT IS VERY IMPORTANT TO SHARE THE KNOWLEDGE ABOUT THE TYPES OF DISEASES THAT ARE IN THE WHOLE WORLD
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@steem-ua ·
#### Hi @nonzerosum!

Your post was upvoted by @steem-ua, new Steem dApp, using UserAuthority for algorithmic post curation!
Your **UA** account score is currently 2.417 which ranks you at **#17076** across all Steem accounts.
Your rank has dropped 20 places in the last three days (old rank 17056).

In our last Algorithmic Curation Round, consisting of 434 contributions, your post is ranked at **#65**.
##### Evaluation of your UA score:

* Only a few people are following you, try to convince more people with good work.
* The readers appreciate your great work!
* Good user engagement!


**Feel free to join our [@steem-ua Discord server](https://discord.gg/KpBNYGz)**
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@steemstem ·
post_voted_by
<center> https://cdn.discordapp.com/attachments/354723995037466624/463380522928963599/steemSTEM.png</center> <br><br> This post has been voted on by the steemstem curation team and voting trail.  <br> <br>There is more to SteemSTEM than just writing posts, check <a href="https://steemit.com/steemstem/@steemstem/being-a-member-of-the-steemstem-community">here</a> for some more tips on being a community member. You can also join our discord <a href="https://discord.gg/BPARaqn">here</a> to get to know the rest of the community!
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@nonzerosum ·
$0.29
Thank you steemSTEM!! :-)
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@utopian-io ·
#### Hi @nonzerosum!

Your post was upvoted by utopian.io in cooperation with steemstem - supporting knowledge, innovation and technological advancement on the Steem Blockchain.

#### Contribute to Open Source with utopian.io
Learn how to contribute on <a href="https://join.utopian.io">our website</a> and join the new open source economy.

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