It’s a matter of life and death – but life is winning

One of my colleagues at TBIJ, Chrissie Giles, always says that good health journalism can save lives. (She also always says ‘are you making tea?’ if you pass her desk when her mug is empty).

As cheesy as it may sound – and Chrissie would be the first to admit it – the stories I’m sharing with you today show it’s true. I was moved and inspired by how far the reporters went to make sure their findings reached people who could do something to make a difference.

~ As a heads up, this edition includes descriptions of pregnancy loss, stillbirth and childhood cancer. If that’s not for you, no worries, I’ll see you next week ~

Every year, more than 20,000 pregnancies in the US end in stillbirth – in the US, that’s defined as losing an expected child after 20 weeks of pregnancy or during birth. As many as a quarter of stillbirths may be preventable.

Duaa Eldeib and her colleagues at ProPublica have diligently reported on stillbirth for more than two years, speaking to parents, campaigners, doctors, nurses and legislators up and down the US. They covered devastating personal stories, racial biases, and other systemic issues behind the US’s high rate of stillbirths. 

Last week, I was delighted to see Duaa report some landmark news. The US Congress had passed legislation that, for the first time, expressly permits states to spend millions of federal dollars on stillbirth prevention and research.

“This is a moonshot moment for stillbirth prevention,” Emily Price, the CEO of Healthy Birth Day, told me afterwards. Healthy Birth Day is a nonprofit set up by parents that had been championing the bill. 

ProPublica’s reporting detailed how federal agencies in the US had not prioritised critical research into stillbirth that could reduce the number of deaths. In some cases data had been collected but never analysed.

Meanwhile, other countries have made leaps in preventing stillbirth through awareness, research and care. In the Netherlands, stillbirth rates were more than halved in less than 20 years.

Congress passing the new legislation to fund research, officially called The Maternal and Child Health Stillbirth Prevention Act, hopefully means the US will soon follow suit. 

Emily truly understands the difference this could make. “As someone whose son was saved by stillbirth prevention efforts … I have cried many tears of joy over this progress,” she said. “It’s a huge victory for thousands of parents across the United States who have lost babies to stillbirth.”

Parents like Amanda Duffy, who first featured in ProPublica’s reporting in 2022. “It means the world to me,” Amanda told me. “My daughter Reese was stillbon in 2014. There isn’t a day that goes by that I don’t wonder about her and miss her deeply.” 

When Reese was stillborn, Amanda, then 31, couldn’t fathom that her daughter had died. As she came round from the anaesthetic of her C-section, she struggled to open her eyes and face the news. 

There’s a few lines from Duaa’s piece that have stayed with me:

Amanda said that her doctors had never discussed stillbirth with her and it wasn’t mentioned in any of the pregnancy materials she had read. Since Reese’s death, Amanda has advocated for change; she coaches doctors and nurses on improving care for patients who have suffered pregnancy loss. “Having this bill pass means that the government is finally recognising that my daughter’s life matters enough to invest in preventing stillbirth happening to another family.”

The crisis of US stillbirths was a story that badly needed telling. “None of this would have happened without ProPublica’s reporting,” said Amanda. 

“The way that Duaa and ProPublica painstakingly researched, graciously interviewed and did their due diligence leaves little question that stillbirth is a public health crisis that needs to be addressed,” she explained. Besides the stories revealing the scale and causes of the harm, Duaa and her team also delivered an explainer with information for parents and a touching memorial to children lost to stillbirth. 

The team took the story to policy makers and on the road, touring different states to show the devastation that stillbirth causes and the gaps in the system that lead to it. “It’s opened a lot of eyes,” Emily said, “and helped lead to a sea change we see coming in this country.” 

I find it heartening that driven campaigners like Amanda and Emily feel so strongly that journalism has helped them in their vital work. They are far from done, Emily says. “We won't rest until we know our country is doing everything it can to prevent preventable stillbirth.” 

Clearly, they’re the real heroes, using their experiences – and in Amanda’s case her grief – to drive change that will benefit thousands. “I am so honoured to be able to tell Reese's story,” said Amanda. “She did not die in vain, she is saving lives.” 

“For me, it’s a question of fairness.

If someone is being treated with a medicine, then they have the right to be treated with a medicine that actually is what it says it is. One that has the correct ingredients in it, that hasn’t degraded, and that doesn’t have things in it that will hurt them. 

It’s too important. Because, particularly for chemotherapy, once a person has been diagnosed with cancer, there’s a limited window of opportunity for treatment to work. And if someone is treated with a product that’s not effective, they can lose that precious window of opportunity.

When I read the report, what it really established was the harm. It demonstrated that, for many of those children, the window of effective treatment had closed on them while they were getting this bad-quality product. 

Something about that really resonated with me.

I'm an analytical chemist. So when I see reports of bad quality products, I wonder, ‘What would it take to find these products before they hurt people?’

[Marya works with collaborators in Ethiopia, Kenya, Cameroon and Malawi. At their next meeting they discussed the findings, dialling in Dr Ronald Barr, one of the experts who helped cowrite the report.]

Every one of those countries had received multiple shipments of these drugs that have questions associated with their quality. So the people in that room were not happy. 

They were angry that they were just now learning about this; angry that these products were in their countries in the first place; and angry that they still didn't have a way to tell if the drugs that they're using day-to-day are good quality or bad quality.

It was kind of an inspiration to take up a new challenge. I’d just been focussing on testing the quality of small molecule drugs, because that's what I have most experience with. [I won’t try to explain the science, but asparaginase is not a small molecule drug. It is, as Marya puts it, “a big honking enzyme”] 

But I realised that I have the resources at Notre Dame that all my collaborators in that room didn’t have. So we decided to look at how we could test the quality of asparaginase. I started planning out what to do next and how to get funding on the plane back to the US.

We’re at the very beginning of development of the tests right now. But I’m hopeful that in a year we should have something that we can start testing out in the field.

I feel excited about this. Usually, when you have a scientific research problem, you have infinite time to explore the problem. Here, we don’t have infinite time. We need to make this work as fast as we can.

If things go to plan, my goal is that the tests will lead to better healthcare outcomes – that they will ensure that when children receive these treatments, which are miracle treatments for kids with leukaemia, that they really do receive that miracle.”

If you’ve found yourself dabbing your eyes reading some of the above, you’re not the only one. It’s powerful stuff! And I guess that’s the thing with health reporting – it really matters. It speaks to the blood and guts of life that we all not only know but feel. 

What struck me in both these stories, besides the unflinching rigour of the reporting and the sensitivity of the storytelling, was the efforts of the reporters beyond the story. A headline alone can make a splash one day but be gone the next. Going back to TBIJ’s tea-loving deputy editor, Chrissie would say that journalism should do more than just reveal information. It should make this new information available and accessible to anyone who can use it to change the world for the better. I don’t think there’s any doubt these reporters did that. 

It also means there’s more change in the works as a result of both stories. I’ve spoken to several incredible people about stillbirth, and seen more proposed solutions to the problems of faulty asparaginase. It’s rare I get to say this, but there’s even more good news to come! 

I’d love to hear what you think of this newsletter and all the other ones I’ve written so far. You can email me anytime just by replying to this email so you can tell me exactly what you want to be reading about.