The facts speak for themselves: Black men are twice as likely to develop prostate cancer as white men and 2.5x more likely as white men to die from it.
Researchers are trying to understand the biological and behavioural reasons for the difference in incidence and outcomes,
Current policy from the NHS is to offer Black men increased access to PSA testing.
And here’s the problem:
Black men appear to get screened less for prostate cancer than white men even though they’re at higher risk; and they participate less in clinical trials that drive research into the causes of disease like prostate cancer.
“Many reasons have been put forward to explain the difficulties in enrolling African Americans in clinical trials. Chief among them is distrust of the medical establishment and fears of exploitation in medical research in this population (Am. J. Public Health 104, e16–e31, 2014). The infamous Tuskegee Study, in which the US Public Health Service deprived hundreds of African-American men of syphilis treatment so that researchers could study how the disease progressed, has cast a long shadow. In some communities, African Americans may also lack sufficient information regarding what clinical trials can offer and the safeguards in place to protect the privacy of their information. Beyond distrust and lack of information, substantial logistical hurdles can also impede fuller clinical trial participation. For example, some individuals may have limited access to the cancer centers that are the hubs of clinical studies, or they may lack the ability to take time off work to take part in a trial.”
The research shines some light on a legacy of mistrust and exposes areas that are less understood but the facts speak for themselves and support the urgency to encourage more black men to get screened for prostate cancer and to participate in research aimed at understanding their increased risk.
The pandemic has spotlighted these issues, drawing attention to vast health inequalities across racial lines, often quite brutally manifested in both the UK and USA. Two stand out – deaths from Covid19 have been greater in the black community, and takeup of vaccination has been lower.
A recent Opinion piece in an American medical journal examined why:
“There seems to be a distrust of doctors and research in Black communities in the U.S. and beyond …. A Black law school professor talked about the reluctance of Blacks, even those who are health professionals, to undergo COVID-19 vaccinations despite high death rates in the Black community. She said ethicists and medics blame this on the infamous Tuskegee experiment involving Black men with syphilis, but that she doubts that many people know anything about the Tuskegee experiment.”
It references Willie Underwood, a highly respected Black American Urologist who himself had prostate cancer, and has commented publicly on the disparities between black and white men in screening and treatment for prostate cancer.
“the Black community has many issues to overcome regarding the stigma of prostate cancer and other cancers, homophobic fear of digital rectal exams, and mistrust of the medical community and researchers”
He goes on to say
“We need to encourage more young men to get themselves checked, to at least get that baseline in so they know what their status is, and then follow up on there,” he said. “Many of the men, if they weren’t being followed in some way, they wouldn’t know there’s a problem, such as their PSA’s spiking or the digital exam showing there are some rough spots or a growth.”
Conversations with former patients give us more insight into why men in the Black community are reluctant to get screened for prostate cancer.
Delroy Wright tells us about his personal experience and that of one of his friends. Both were diagnosed around the same time and started out in similar positions in terms of the nature of their diagnoses, and both went on Active Surveillance — but met with very different outcomes.
Del was increasingly disillusioned with AS and opted for treatment after 18 months. Fortunately he was suitable for HIFU, which he underwent with TFTC Consultant Urologist Raj Nigam, and, as he says, ‘never looked back”. His friend also became disillusioned with AS and when he sought treatment his prostate cancer had progressed, requiring more radical treatment. Fortunately this was successful and he is well and active, but both men felt “cheated” in being put on AS. Del says
“we both left it for a year and a half and in the end (my friend) was not a suitable candidate for HIFU anymore as his cancer had advanced. Anything can happen in a year – it could mean life or death.”
Indeed, there is widespread strong opinion about AS for black men. Willie Underwood is particularly vocal:
“If Black men have more aggressive cancer, then why would you treat them less aggressively?” they’re not like white men, why would you treat them like whites? So, on the one hand, you say they are, but on the other hand you’re saying they’re not.
“My friend and I were both on Active Surveillance and left it for a year and a half before looking into HIFU but so much can change in this time. I feel fortunate that I could still have the HIFU treatment, but my friend found out he couldn’t as his cancer had advanced. I now advise everyone to get their prostate checked and act as soon as possible – the earlier you catch it the more treatment options are open to you.”
Del also told us that many Black men – all that he knows – are reluctant to see a GP for prostate screening, mainly because they don’t want to have a DRE performed by a male doctor. In his case he specifically asked for a woman to undertake the procedure, and suggests that a simple change in communication to Black men about screening reflecting this preference could make all the difference in improving takeup.
If you’re a Black man with experiences you’d like to share about prostate cancer screening and treatment, please get in touch. And as a call to action, we encourage all black men to engage with research being undertaken by Prostate Cancer UK. Its PROFILE study is actively seeking participants.