Sharing experiences to level the healthcare playing field

Amanda Barrell speaks to Alfred Samuels on his experience of prostate cancer and diversifying clinical trials to include the Black, Asian and minority ethnic (BAME) community.

Alfred Samuels’ stage 4 metastatic prostate cancer brought his 30-year career, which had seen him travel the world with the likes of Beyoncé, Oasis, and Bob Dylan, to a shuddering halt.

Now, through his books and advocacy work, he is determined to help others prepare themselves for the “horrendous” cancer journey and help level the healthcare playing field for the BAME community.

In 2011, Alfred was a fit and healthy 54-year-old providing security for music’s A-listers on global tours. But then he started experiencing an excruciating pain which radiated from his lower back and into his leg.

At A&E, he was told it was “probably sciatica”, but was advised to ask his GP to refer him for an MRI scan just in case.

“They messed me around for three months before agreeing to a scan. Then, two weeks after the MRI, the diagnosis came in. It was stage 4 metastatic prostate cancer and it had spread to six locations in my body,” said Alfred.

“I went for some tests and the prognosis came back – I was given six months.”

While he was fortunate enough to secure a place on the STAMPEDE clinical trial, during which he received abiraterone and hormone injections, the side effects were “not pleasant”.

“I was hospitalised on a couple of occasions because the pain was horrendous, and they hadn't got the pain relief medications sorted out properly. I collapsed due to compression of the lower back. I had brain fog and fatigue. I went from someone who was able to run and sprint quite easily to being like a 90-year-old man. It was not a pleasant journey.

“It was untimely, unwanted, and as far as I'm concerned, undeserved,” he said. “My career was over, you’ve got all these mental issues, and then there’s the financial toxicity of it all.”

At the time of presentation, Alfred’s prostate-specific antigen (PSA) was more than 500 ng/ml, compared to the “normal” level for his age at the time, between 2 ng/ml and 4 ng/ml.

However, within months his PSA had dropped to less than 0.01 ng/ml, so Alfred stuck with the punishing protocol.

“One year became two years, two years became three years, and it’s probably then that I started to believe in myself, believe that I could beat it,” said Alfred.

Publishing the journey

Since then, he has published two books based on his experiences and the diaries he has kept of his journey. Invincibility in the Face of Prostate Cancer: Coming Out the Other Side charts his time in the clinical trial, and Motivated to Inspire focuses on the post-treatment period.

“I think it’s really important for men, their partners and families to understand that there is much more to this disease than you think.  You really have to work as a team to get through it,” said Alfred, adding that his wife, Grace, had been invaluable support throughout his journey.

“Interacting with the medical fraternity needs to be explained to people so they get a better understanding of what they're going to go through. It's a journey full of pitfalls and pain, and you've got to be able to condition yourself for that.”

Focus on inclusivity

Alfred is an ambassador for Cancer Research UK, which funded the STAMPEDE trial, and works with groups including The Urology Foundation and Orchid. He also sits on a patient consultation panel for pharmaceutical company Parexel.

Much of the work he does centres around raising awareness of the patient experience, and the issues of diversity and inclusion are always top of his mind.

“Black people are not getting the best deal when it comes to healthcare, and where prostate cancer is concerned, black men are disproportionately affected,” said Alfred, explaining that Caucasian males had a one in eight chance of developing the condition, while the figure is one in four among black men.

A big part of the problem, he went on, was a lack of BAME representation in clinical trials, and he urged anyone from underserved communities to take part in research if they could.

“There are medications that are just not being tested on people from the BAME community. We will react differently to Caucasian people, so without more people from BAME backgrounds getting involved, we can never be sure that the information we are getting is correct,” he said.

Asked how the industry could be more inclusive, he said it was about trust and understanding.

“If you don’t take the patient’s voice into consideration, you have no understanding of what’s going on for them out there and you end up in a sticky situation.

“I think pharmaceutical companies are cottoning on to that now, but there’s still a lot of mistrust. It is about building relationships and getting to know the communities you are working with.

“Are you speaking in a language that they understand? Are the concepts broken down so that they are digestible?

“It's not rocket science,” said Alfred, adding that the industry is now starting to understand the importance of such issues, and put plans in place to address them.

Patient Insights is a monthly series that appears in partnership with Inspire, a company with an online support community of more than 2 million patients and caregivers worldwide.