Shakira Has Chagas (The Fake News that Would Shed Light on a Forgotten Disease)

Social media algorithms don't favor scientific arguments. So could fake news about Shakira help raise awareness about Chagas?

The news spread like wildfire on social media: Shakira's team had supposedly released a statement confirming that the Colombian artist had tested positive for Chagas disease. Although the information turned out to be false, it succeeded in bringing one of the world's most neglected diseases into the spotlight.

How did the rumor start?

It all started with a claim that Shakira had undergone a Chagas test during a voluntary blood donation at a mobile Red Cross center in the United States. These centers often include testing for diseases such as Chagas as part of their protocols

According to rumors, the singer may have contracted the disease during her recent tour of Latin America, a region endemic to the insect vector (known as vinchuca, chinche or pito, depending on the country). Although this insect is traditionally associated with rural areas, climate change and population movements have expanded its habitat to include large cities.

What the f…? and other similar reactions

The first reactions from her fans and followers were immediate. Most expressed concern, while others were filled with big question marks:

“¿Shakira has what??”

“What the f… is Chagas?

And so tens of thousands of such comments poured in, mostly from Latin America. Here's where it gets surprising. Such comments might be expected from other parts of the world, but not from the endemic region where Chagas is the leading parasitic disease, with over 70 million people at risk and thousands of deaths each year. It's also surprising that the questions came from the United States or Spain, where a where a significant portion of the population with Latin American origins and Chagas live. Although, in reality, it's not so surprising when you consider that the World Health Organization includes Chagas in its list of the most forgotten diseases.

Other comments tried to comfort Shakira by sending her "good vibes, strength, hearts and fist pumps," along with emojis of hugs, etc. But once again, the questions and confusing responses overwhelmed social media. Here are a few examples, taken from X:

Is that cancer? OMG”

“Is it something that makes you break out or get swollen eyes? My grandma had it and died from ‘changas’”

“Is it a Chinese virus?”

“I don’t believe it. That’s a disease for poor people who live in the countryside"

Those who knew what it was

In many other places in Latin America, however, some people and communities knew immediately what it was. In the Brazilian Amazon, the Bolivian and Paraguayan Chaco, much of Argentina, and in regions like Arauca or Boyacá in Colombia, Matagalpa in Nicaragua, Chiquimula in Guatemala, Oaxaca in Mexico, and even Florida or Texas in the United States, people knew what it was.
But unfortunately, algorithms don't favor those who know, suffer, or study Chagas as much as they do fake news and spontaneous, immediate reactions. This is something that didn't improve after the global experience of the Covid-19 pandemic, but rather got worse.
Far from being a public health priority in Latin America and other countries outside the region, Chagas remains largely unknown to the general population, and even to many frontline health professionals, compared to diseases like dengue, Zika, or malaria.

The insect (of the triatomine species) remains the primary vector for transmission of the parasite Trypanosoma cruzi (T. cruzi). It bites humans and animals, leaving its infected feces at the site of the bite. The disease is also spread through congenital transmission, mother-to-child transmission, and ingestion of contaminated fluids and food (which can be fatal). It is estimated that more than 30% of people with the infection develop severe heart complications (many requiring heart transplants), and more than 10% suffer from digestive or neurological disorders.

Real good news

The good news is that there is a treatment. There are two equally effective drugs (nifurtimox and benznidazole), especially in the early stages of the disease and in children, including newborns, as well as adults. In fact, there is evidence that treating women of childbearing age can prevent potential transmission. In addition, new diagnostic tools are being researched to enable faster and more effective detection, especially in congenital cases, as well as shorter and more effective treatments and even a possible vaccine. The goal is to facilitate access to these solutions for at-risk populations, with promising results.

The problem is... "There's no money, damn it!"

There isn't. That's the problem. Or maybe there is, but hardly anyone thinks about investing in the fight against Chagas. It doesn't seem like Milei or other policymakers or the big global health funders will. And yet, according to some estimates, only about 1% of the people who need the treatment get it. And the treatment is either donated or available at very affordable prices, with a wide range of diagnostic methods. But more than a century after its discovery in Brazil by Dr. Carlos Chagas, very few people seem to care.

So why the neglect? Out of sight, out of mind...

It's neglect, of course. But it's also about the nature of the disease: asymptomatic in most cases. That is, invisible and silent. People need to be identified before it's too late. But if you don't look for them, it's as if they don't exist, and so they disappear.

A fake news for a good cause?

Just in case there was any doubt, the fake news about Shakira having Chagas is indeed a fake news story. The idea came to me from a Chagas researcher during a break in a work meeting: "If a famous person publicly said they had Chagas, even if it was a lie, it could cause thousands of people to seek information and get diagnosed," he remarked. He then used the example of Angelina Jolie's public announcement that she had cancer. "The next day, thousands of women flooded labs and clinics to get tested. In other words, we would need a famous person to publicly say they had Chagas, even if it was a lie. But it would be a 'true lie' or a 'good lie'. Maybe so..."

Maybe so. Maybe then many people would want to know more about Chagas and demand diagnosis and treatment as a right. Maybe then many other Latin American celebrities and influencers would be talking about Chagas, pushing their governments to seek more resources for Chagas care, and encouraging citizens to become better informed.

A truth that can no longer be ignored

Using a celebrity's name while they’re still alive to create a fake news story with good intentions is not right. A lie is always a lie.

But the experience of the pandemic, as well as recent conflicts and emergencies, shows that fake news distorts and serves very negative purposes. Scientific arguments, no matter how evidence-based, are hardly picked up by social media algorithms, nor do they penetrate the part of society and the political sector that exploits fake news for shady purposes. So if truth sometimes fails, why not twist fake news and make it serve a purpose, even if only on a small scale?

And no, Shakira does not have Chagas, as far as we know, and we apologize for using her name in an article about a real disease that desperately needs attention, a disease that Latin America in particular has suffered from more than One Hundred Years of Solitude. I don't know if this approach can turn curiosity into action, but as the researcher said, maybe we need more "true lies" to draw attention to a truth that can no longer be ignored. Maybe so.