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Every person mistakes the limits of their field of vision for the limits of the world

This July, Durban played host to their second International AIDS conference. This is the biggest and most publicised of the HIV conferences, with the likes of Elton John and Prince Harry showing up to support the cause. This meeting is not really recognised for its pure scientific nature, but is regarded in our lab as something everyone should attend at least once. The goal of the meeting is really to bring social issues to the fore: interventions, activism and policy to improve the lives of those affected. Ultimately for basic scientists, it’s about gaining a wider perspective about the work we do, the impact we make and to motivate us to work harder to lighten the burden South Africa has borne for so many years. But the world of activism, especially celebrity activism, is also a world that could learn from science.

Charlize Theron spoke at the conference saying several things that upset me. The media raved about her speech saying she certainly didn’t sugarcoat anything – as if we don’t know how bad the epidemic is already. I think one of the things that upset me most was this, “The real reason we haven’t beaten the epidemic boils down to one simple fact: We value some lives more than others.” I do not deny that this is a very real issue in the world today; but I truly don’t agree that this is why we haven’t beaten the epidemic. It is easy to get swept up in this statement and feel some guilt as a privileged and fairly happy PhD student who lives life with a clean bill of health (apart from sleep deprivation), but I am worried that a statement like this really works against scientists.

There are legitimate and horrifying biological challenges that we face with this formidable foe. HIV adapts so rapidly our immune systems can’t keep up. About 20% of people develop amazing antibodies that can target 90% of the circulating virus but because this only happens 3 years after infection, this doesn’t help the person at all. We have had 6 HIV vaccine trials, none of which have done any better than 31% protection. The virus integrates into the person’s DNA, which makes a complete cure very difficult. We have cured one man by completely irradiating him twice and nearly killing him and we have thought we cured one baby by giving it ARVs in the first hours of its life (it has since rebounded), with little knowledge about how it will affect it over life. Please understand that the dearth of progress is not for lack of trying or because scientists are secretly plotting against adolescent women.

We simply have not figured it out yet.  Even with incredible education, support and dedication by some truly wonderful people in this country, there continues to be a barrage of infections. While social behaviours and injustices definitely help spread the disease, the ONLY thing that will stop it is a vaccine or a cure. It sounds noble to try and reinvent social interactions (a goal that must be pursued in our lifetime) but this is not what brings about a real-world cure to a horrible disease. Polio swept the world several times throughout history. Do you know when they stopped it? When they found a vaccine! (Read about other diseases defeated by vaccines here.)

The second thing that bothered me in Charlize’s talk, “I know this because AIDS does not discriminate on its own. It has no biological preference for black bodies, for women’s bodies, for gay bodies, for youth or for the poor. It doesn’t single out the vulnerable, the oppressed, or the abused.” This isn’t true: the disease does discriminate. Women are biologically more likely than men to contract the disease (read this link for an in-depth analysis and click here for a simplified version), and routes of transmission make gay men in particular vulnerable to infection. I understand what she is trying to say, but to a scientist these statements are incorrect and are once again, making the point that AIDS is only a social disease. People will never perceive themselves to be in a socially-constructed high-risk category. Many of the people I know own cars that they drive every day (a truly high-risk activity!) and not one of them wears a crash helmet.

Charlize later went on to say that we “have all the tools to end HIV.” And we don’t. The fact is education and empowerment doesn’t work completely. We need an intervention that people will not have to think about. How seriously do you worry about Pertussis every day or dying from Mumps? Everyone has access to these vaccines and that is what we need to do for AIDS. I agree completely with Baron Peter Piot (a researcher from the London School of Hygiene and Tropical Medicine) when he spoke at the same conference, “We need to stop saying that we have the tools to end the HIV and AIDs epidemic, until we have a cure or a vaccine- then we can say that.”

I wouldn’t want any young person to listen to Charlize Theron’s speech and assume that there is any lack of urgency in the scientific field because the disease is not prevalent in the white upper class. We are facing a terrible enemy and while we know a lot about it, it keeps coming up with clever ways to evade our advances. The world could always do with improvement. Young girls should think they are better than their relationships and can go on to live an HIV-free life. I applaud people trying to change this. Ultimately though, scientists are dedicated to making a vaccine for everyone. It, much like ARVs, will shape the lives of people much more quickly than changing social perceptions can. It would be easier if we could just give an injection that would bridge the social divide, but then again, I am a scientist looking out of scientist goggles, with potentially limited eyesight.

Posted on by ScientistSim

The dangers of misinformation and miscommunication

I will start this article, I’m fairly confident, the way that no good story has ever started:

I was standing in the line at home affairs last week. I happened to strike up the usual conversation one has at these places; “Why is the line so long? Do you need photos?  (It amazes me that no one ever knows the answer to this question!) Are we going to be here so long that the sun will absorb all of our moisture and when our families come looking for us all that will remain is our tortured souls still hoping for our passports?” Having run out of things to complain about, I asked my fellow brave soul what he did for a living. He was a very high powered investment banker who also had a PhD. I learnt that day that education truly is not enough when ignorance is a dominating plague.

I wish I had told this man I was a struggling actor or an astronaut – but then again he would have had an opinion on that too. “An astronaut? Really? I heard the earth is flat and the moon is Gorgonzola. Is that true? Wait, I know it’s true. So don’t respond.” I didn’t though. Sadly I said I was a HIV researcher and his face darkened. A frown dug its way into his forehead and I could hear the 10 ton piano that was about to fall on me strain in its support. “You know,” he said in a suddenly condescending tone, “I don’t buy this whole ‘HIV’ thing. (He actually did the inverted commas with his fingers, which somehow made the whole thing worse.) I heard that it was the Americans.” I realised by the way he sneered the last part of his sentence that nothing I said was ever going to change his opinion. Valiantly I tried to explain that HIV was a zoonosis and had jumped species on at least 3 different occasions. (Read more about why this doesn’t happen that often.) I spent what felt like an entire lifetime trying to convince him about the scientific evidence. And in the end, the best line emerging from this conversation was his, “Well, you can have your opinion and I will have mine.”

The benefit of having a science degree is knowing that the most popular opinion is not always the right one. Having been trained to question everything, I’ve since understood, is not a skill everyone has. In society, the loudest (most obnoxious!) person is the one who gets heard (once again think Donald Trump) while in science you will get laughed off of a conference stage without any data. This is possibly the root of misunderstandings in science. The people listen to the strongest voice and all the while the white coats are in a corner throwing around statistics. Even when scientists are completely right, some rapper may still convince a few people the earth is flat (see this hilarious exchange between B.O.B and Neil Degrasse Tyson – thank goodness for him!).

Another huge contributor to the hall of misunderstanding and strange theories is the media. Now let me be clear; it is not just the journalists who misinterpret. It is the job of a scientist to simplify and explain their work. One of my science heroines Françoise Barré-Sinoussi (co-discover of HIV), who I was privileged to hear speak, said that at the end of your life you do not remember the journal articles you published or how high their impact number was, but the lives you have changed with the work. If you can’t communicate and translate your work, who will it ever truly benefit? I find that if you can explain your project to your Granny so she understands why you are doing it and how it may help the world, you really understand it yourself.

As a postgrad it’s easy to feel lost; to feel that your work is too far removed from any kind of real-world application. It is easy to think that you’re just doing this to get a degree. However, it’s good to communicate your science for lots of reasons: 1) you can prevent misinterpretation, 2) you can make people feel that they can engage with science and not have their heads explode, 3) you can help scientists in queues at Home Affairs retain their sanity when non-scientists begin to ask questions and 4) you can feel relevant. It’s important to remember it really is our duty to not lock ourselves in a lab, but to reach out: to teach not only the uneducated but the ignorant too. It’s up to scientists to add their voice, otherwise we may be drowned out by the loudest opinions. It’s up to us to build public trust in science. If we are only heard when there is crisis then we are never heard in calm (see this article by Tolu Oni).

 

Scientist news cycle
How science communication works… (www.phdcomics.com)

There have been miscommunications that have done very serious damage too. One is most certainly the notion that vaccinating your child will result in autism (read here why this isn’t true). This has resulted in 100s of unnecessary deaths from measles in small children. Another is that HIV doesn’t cause AIDS, perpetuated by our very own ex-president Thabo Mbeki. Some “facts” are even started out of fear as a rumour: in a small town called Vulindela, wonderful things are being done by the organisation we work with (CAPRISA), to try to reduce unwanted pregnancies and HIV incidence. One of the proposed ways to do this was to insert IUDs into young girls following extensive education on the matter. The programme had to be stopped because one of the girls told all her peers that maggots would grow internally. Naturally teenage girls were then hesitant about IUDs. A far more famous case of misinformation is what happened to Hendrietta Lacks in 1951. With questionable ethical practice, doctors treating this woman took samples of her cervical cancer and made a cell line (cells that are descended from one cell and have the same genetic features) that was able to be kept in culture indefinitely. This cell line is one of the most widely used in clinical trials today; a form of which we use to test the efficacy of HIV vaccines. This woman had no idea what these doctors and scientists were doing and many years later, her family thought that she was still alive because scientists had “immortalised” her cells (Read more about this incredible story in Rebecca Skoot’s novel).

Miscommunications in science can be deadly and disturbing and we have to find ways of changing this. As a PhD student it is my job to pick the hard questions and find answers but, it is imperative that I find ways to explain the hard questions in a way that anyone can engage with them. Solutions can come from the strangest places, even the line in home affairs.