There were many stories like Uwadiae’s at our inaugural Black in Cancer conference, held in partnership with Black in Cancer at London’s Science Museum on 10-11 October.
“I don’t subscribe to the idea that you can’t be what you can’t see,” said Uwadiae, who now works at the Wellcome Trust. “You can do it. It’s just so much harder.”
The conference itself provided plenty of evidence that people can succeed despite adversity. It brought together more than 200 leading cancer researchers, medical professionals and people affected by cancer, primarily from the UK, the US and Canada. They came to make sure things never have to be so difficult again.
“Cancer is a very, very heterogeneous disease,” said Black in Cancer co-founder Dr Henry Henderson, a researcher at Tennessee’s Vanderbilt University Medical Centre, at the start of the conference. “The workforce has to be just as different, just as diverse, for us to make tremendous change.”
We’re partnering with Black in Cancer to help make the cancer research community – and the research we fund – more inclusive and representative. Uwadiae and other attendees are doing the same where they work. But, as the conference showed, that’s just the beginning.
So, what could ‘tremendous change’ look like? And why is it so desperately needed?
Here are 6 of the most important things we learned at the Black in Cancer conference.
1. Research needs to be more representative
If we want to get better at understanding, preventing and treating cancer, we need to consider the people it affects, in all their variety. That’s not happening today.
Take the International Cancer Genome Consortium, which is trying to work out the causes of 50 of the most important cancer types.
It’s one of the biggest and most ambitious medical research efforts since the Human Genome Project, and it involves countries from around the world. But, as Dr Iain Foulkes, our executive director of research and strategy, told the audience, there’s a “missing continent”. None of the 25,000 samples collected for the study came from Africa.
Things aren’t much better within individual countries. Foulkes also highlighted a study that found only 1% of participants in US melanoma, breast and lung cancer clinical trials carried out between 2015 and 2017 could be confirmed as African American. Most of those trials didn’t record any data about race or ethnicity at all.
That’s a problem. “As humans, we are complex beings, with multiple diseases, generations and ancestries,” said Foulkes. “This all adds up in how we respond to different treatments, how our diseases develop, and so forth. And if we’re not analysing that diversity, we’re never really going to make the breakthroughs that we need to see for personalised cancer medicine.”
2. Cancer cells are being cornered
But there are still people driving our understanding of cancer forward. Dr Christina Towers, an assistant professor at the Salk Institute for Biological Studies in California, is one of them.
Towers is working to target hard-to-treat cancers that start in the pancreas and lungs. Her main approach is to stop cancer cells from recycling their waste products into new energy.
Blocking the primary recycling process in tumours kills cancer cells by clogging them with waste and starving them of nutrients. It’s a powerful technique that can shrink cancers very quickly, but the evidence for how well it works in practice is mixed.
That’s the problem Towers is working to solve. She and her team have shown that blocking this recycling process doesn’t shut everything down. It’s more like closing a city’s busiest stretch of motorway.
In the short term, traffic grinds to a halt.
“The vast majority of the cells die,” Towers explained. But a few are more cunning.
“If you’re sitting in traffic, what are you going to do?” Towers continued. “You’re going to ask Google to reroute you.” Similarly, some cells are able to work out detours that also allow them to clear out waste and create energy. That allows them to take over. As a result, “the tumours come back, and our patients are relapsing and back in the clinic”.
Towers and her team are tracking the detours so they can stop that happening. Already, they’ve found that some cells can bypass the recycling process by joining damaged “energy powerhouses”, or mitochondria, with healthy ones to keep everything running smoothly.
The Towers lab is also the one of the first to uncover a clue about why our cells contain tiny, mysterious packages called ‘mitochondrial-derived vesicles’ (MDVs).
In cells that survive after the main recycling process is blocked, the number of MDVs starts to increase. It turns out that they can work like robotic vacuum cleaners, wrapping up damaged portions of mitochondria and taking them to other parts of the cell that can also dispose of waste.
Importantly, both of those processes could also be disrupted by specific drugs. If Towers and her team can find all the detours – and design drugs that can block them – they have a chance to improve outcomes for many people with lung and pancreatic cancers.
3. Who gets the best?
Creating effective treatments is only the first step. No drug can make a difference if it doesn’t reach the people who need it. That takes extra effort.
Dr Brandon Blue is an oncologist specialising in blood cancers at Florida’s Moffitt Cancer Centre, one of the leading cancer centres in the US. He’s seen just how effective CAR T-cell therapies, which train the body’s immune system to target cancer cells the way it does viruses and bacteria, can be for people affected by cancers that don’t form solid tumours. He’s also noticed disparities in who gets them.
“We probably do more CAR T than most places in the world,” he explained. “And I noticed a trend: there are no Black people getting it.
“I was confused. There are certain diseases, such as diffuse large B-cell lymphoma, where, unfortunately, African American patients actually do the worst. And so I said, ‘Here’s a game-changer for this disease that’s killing Black people – where they at?’”
None of the other US cancer centres Blue contacted had any answers. If anything, they hadn’t realised there was a question. There was no race or ethnicity information in their CAR T-cell therapy patient databases.
Blue suggested they change that (they’ve now done so). Then, he talked to Florida’s oncologists.
It turned out that the doctors that knew the least about CAR T-cell therapies were also the least likely to offer it to patients. And those doctors happened to work in the areas with the largest African American populations.
It’s an example of how social and structural factors contribute to cancer outcomes. Encouragingly, it’s also something that can be addressed with education.
It’s not the only thing. Researchers can also learn by listening to patients. Later in the conference, Dr Tanimola Martins from the University of Exeter explained how he began his headline-grabbing research into racial disparities in NHS cancer waiting times after hearing personal stories told at events for families affected by cancer.
This is about visibility, too.
Right now, it takes openness and creativity to even spot the problems that need our attention, let alone solve them. “There is no cookie-cutter answer,” said Blue.
But there is a way to ask the question.
“We’ve got to bring it to the people.”
4. Clichés don’t help
When Ricki Fairley received the phone call telling her she had triple negative breast cancer, she didn’t have the time to be ill. She was running an advertising business. She had a plane to catch.
After actress Victoria Ekanoye got her breast cancer diagnosis – which only came because she pushed for a second and then a third opinion – she had to compose herself, step in front of the cameras, and pretend to be someone else.
Stories like these, both of which were told at the conference, might bring a cliché to mind. Concluding her keynote, Dawn Butler, MP, who received her own breast cancer diagnosis alone in a London hospital during COVID-19, questioned it.
“I want to end on ‘strong Black women’,” she said. “I don’t hate the term, but I’m very mindful of it. It’s often said in a way that implies that Black women can take the punches, that they can take the criticisms and the licks because they’re strong – but other women you need to treat more gently, more caringly, because they are delicate and precious.”
This isn’t just about words. Butler’s concern is that the way society talks about Black women negatively impacts their health outcomes.
“Black women are less likely to go for a mammogram when invited by the NHS, and they are [nearly] twice as likely to present with advanced [stage 3 or 4] breast cancer than white women,” she stressed.
“There are many reasons for this. But one of those reasons is because sometimes Black women are not taken seriously when they raise issues, especially about their health.”
At that point, the clichés get less flattering. As Butler also pointed out, it’s all too easy for ‘strong Black woman’ to become ‘angry Black woman’. “But it’s not about anger. It’s often about frustration. It’s just another battle that we don’t really want to fight.”
Black men in England are twice as likely to be diagnosed with prostate cancer as white men. They are also twice as likely to die from the disease.
In the US, Black women are less likely to be diagnosed with breast cancer than white women. Even so, they are 40% more likely to die from it.
5. How to make a difference
No one affected by cancer should have to be ‘stronger’ than anyone else. Everyone should receive the same quality of care.
Sometimes, that means treating their cancers differently.
For one thing, large-scale studies have shown that some cancer drugs work differently, and even cause different side effects, in people of Asian origin than in white Europeans.
And, although there are relatively few Ashkenazi Jewish people in the US, research has shown that they are around 10 times more likely to have a potentially cancer-causing mutation in a tumour suppressing BRCA gene than the general population.
So, when a person of Ashkenazi Jewish descent visits Dr Fiyinfolu Balogun’s clinic in New York, he knows what tests to order. If they are diagnosed with cancer because of a BRCA mutation, he also knows the best drugs to prescribe.
We have the ability and expertise to improve cancer outcomes for everyone. We just need to learn how to apply it more broadly.
Ricki Fairley is now the chief executive of US charity TOUCH, the Black Breast Cancer Alliance. By defining Black breast cancer as a unique disease and focusing on the specific social, historical and biological factors that set it apart, she’s mapping out a way to lessen its burden.
As part of their When We Tri(al) initiative, Fairley and her colleagues explain clinical trials to Black women on their own terms, as caring ‘Breasties’ rather than representatives of faceless medical institutions. It’s working.
“I realised very quickly that I could get people from ‘I’ll never do a trial’ to ‘Sign me up tomorrow’ in 5 minutes,” she said.
In a matter of months, TOUCH has been able to recruit around 4,000 Black women to take part in clinical trials for breast cancer treatments in the US.
That’s not all. Dr Fiyinfolu and Dr Onyinye Balogun, among others, are running trials with patients across North America and Africa to better understand how Black people’s physiology impacts how their cancers develop and respond to treatments.
Closer to home, at the Brooklyn Methodist Hospital, Onyinye Balogun and her colleagues have made breast cancer trial participation more representative simply by making it routine practice to tell people affected by cancer what trials they are eligible for. The same technique has increased recruitment rates in all patient groups.
“When you improve things for minoritised populations,” she said, “things get better for everyone.”
6. The difference we can make
“I stand here before you today the result of a man that got onto a clinical trial, which was funded by Cancer Research UK,” he said. “They saved my life – without a doubt.”
That’s only part of the story. Today he’s an advocate for more diverse and inclusive clinical trials, but Alfred remembers when he didn’t want to join one.
“My head was elsewhere. I’d given up. I’d resigned myself to the fact I was going to die.”
It was his wife, Grace, who helped him realise why he should sign up for STAMPEDE.
Grace, a former nurse, was in the audience as Alfred spoke. She has supported him through every step of his treatment. They even wrote Alfred’s speech together. But this part wasn’t in the script.
Alfred pointed to Grace.
“Ladies and gentlemen, trust me when I say that she, and Cancer Research UK, saved my life.
“It was tough. It was more than tough. But my lady stood beside me. She pushed me to live. She made sure that her man was not going to die.”
At the end of the conference, Black in Cancer co-founder Sigourney Bonner, a researcher at the Cancer Research UK Cambridge Institute, urged everyone to remember the stories they had heard.
Alfred explained why. “We all love someone,” he said. “We don’t want that loved one to die, regardless of race, ethnicity, or otherwise.”