Pip Stewart is a British explorer and journalist who faced perhaps one of her biggest challenges during a trip to the Amazon jungle: a flesh-eating parasitic disease called cutaneous leishmaniasis. Since her infection and subsequent treatment, she has become a vocal advocate for patients affected by neglected tropical diseases (NTDs), giving passionate TED talks and media interviews on how this is a pressing issue of global health equity.

She has just published Life Lessons From The Amazon, a book on her reflections on life inspired by her journey from the rain forest in Guyana to a hospital bed in London – and generously donated half of her author’s fees to the Drugs for Neglected Diseases initiative (DNDi). She kindly agreed to answer our questions.

Pip, in the final chapter of your book, you write: ‘Global inequality of healthcare is far more terrifying than anything we encountered in the jungle. It wasn’t just the parasite that got under my skin, it was the injustice of it.’ What did you know about NTDs before your trip to the Amazon?

I knew a little, the sort of things you need to know when you prepare for an expedition. But in terms of understanding the impact of NTDs, it hadn’t really registered. I did not appreciate the full nature of those diseases until I managed to pick one up myself.

This happened after I came back to the UK: I had this mark on my neck that looked like a bite and kept getting bigger. And crusty. I went to the Hospital of Tropical Diseases in London and they told me I had cutaneous leishmaniasis.

The doctors gave me two options: to not get it treated, which means the flesh-eating parasite might spread to my face and my nose. Or to have an outdated form of chemotherapy dating from the 1940s, and for which they would have to monitor my heart and liver functions and perform regular blood tests. ‘But that is the best treatment we have now,’ they said.

I had a bit of panic. But then, I realized how unbelievably privileged I was: I was being treated by world experts, quickly, and for free.

How was the treatment?

I was so grateful to get it but the treatment was toxic and horrible. I was back from a 3-month kayaking journey, I was in the best shape of my life, and suddenly, at the end of the 3-week treatment, I could barely move. I had to sleep on the floor because my body was in such pain. But again, as I explain in the book, I knew that I was so lucky to have this privilege of being treated.

My friend in Guyana, Fay, who lives in a very remote part of the jungle, texted me that she also had cutaneous leishmaniasis before. To treat it, she put burning cow fat onto her skin. That was the only treatment available to her. Because the nearest hospital where she could have gone was five to six weeks away from home and she did not want to leave her children.

The Wai Wai indigenous community, who guided us during our expedition, told me they use crushed turtle shell to treat the disease. While local treatments might be effective at curing the disease, there has been little research done into it. This is why, however brutal it was, I was happy to receive this treatment in London – I was told it has a good chance of success.

And that is also why it was so important to write about that experience, the lack of adapted treatments and the massive inequality in access to the existing cures.

Why are you making so much noise about this?

Leishmaniasis is a scary thing to be diagnosed with, and when it happens you don’t necessarily have all the information that you would need – and this is true for other neglected diseases.

After I started talking about it on social media, I was amazed at the number of people who reached out to me to share their own experience or ask for advice. I realized that there are too many people who need information about the disease and who are as scared as I was.

The more we discuss it, the more we form communities around it, the more we highlight the work that organizations such as DNDi are doing, the better, really.

Readers of my book are reacting with shock. They are wondering: how is it happening that in the 21st century, the second biggest parasitic killer after malaria isn’t getting that much attention?

One of the strangest messages I got was from a doctor who told me: ‘don’t take this the wrong way, but I’m kind of glad this has happened to you, because you have access to media and you are trying to make a lot of noise about the issue.’

Do you have any advice on how we could get more visibility for NTDs and for neglecting patients?

This general lack of interest for NTDs is making me scratch my head. How are we not taking these diseases seriously? I think that, unfortunately, the global North is only going to pay any attention and dig into their pockets for some money when NTDs become a problem for them too.

Climate change, that is impacting the movement of insect populations that are carrying the diseases, or the fact that some NTDs are emerging in places like Spain, may mean that more people in the Global North will feel concerned in the future.

You recently had a child. Were you concerned that the drugs you were taking for leishmaniasis might affect your pregnancy?

Yes. Too few studies have been done on how these treatments might affect pregnancy, newborn babies, or breastfeeding. It turns out that most people being treated in the London hospital I went to were military males. It is a big issue. I was so worried that I even asked the doctor before getting the treatment: ‘do I have to freeze my eggs?’

That is why I am so supportive of the work done by DNDi and its partners. Because we definitely need more research to understand the impact of the diseases and the treatments on everybody, including children, women of childbearing age and pregnant women.

In your book, you suggest renaming the disease ‘William’ – from the first name of the doctor who discovered it – because leishmaniasis is too difficult to pronounce, which does not help to raise awareness about it. Any update on your rebranding efforts?

The WHO itself said that having hard-to-pronounce names may also contribute to why so many tropical diseases are neglected. But so far, my campaign to change leishmaniasis to William is not going so well I’m afraid (laugh).

Thanks a lot, Pip!

Pip Stewart, Life Lessons From The Amazon, Summersdale Publishers, 2021

Photo credit: Peiman Zekavat, Pip Stewart