Your support helps us to tell the story
Black and Asian blood cancer patients are four times more likely to face delays in diagnosis, an “alarming” new report has revealed.
Research from Blood Cancer UK, shared exclusively with The Independent, found 45 per cent of people from ethnic minority communities said they have had to visit their GP three or more times before referral for testing.
Bansri Dhokia, 32, was diagnosed with T-cell acute lymphoblastic leukaemia in July 2020, on the eve of her wedding and during the height of the Covid-19 pandemic. But she only received the diagnosis after a number of false starts.
Speaking to The Independent, the former business analyst, whose illness has left her disabled, said she feels she wasn’t listened to enough and initially felt that her symptoms were dismissed.
“The delay in my diagnosis may have been because it was at the start of the Covid pandemic, so maybe my symptoms were harder to explain over the phone and it was difficult to get an in-person appointment,” Ms Dhokia said. “My heavy bleeding - which is a symptom of blood cancer - was explained by a heavy period, while the fatigue was explained by possible anaemia.”
Awareness of blood cancer and awareness of symptoms among these groups is also low which means that later diagnoses are an issue.
For example, a previous study shows that 77 per cent of people from Black ethnic groups had not heard of myeloma, a form of leukaemia, even though this group is three times more likely to develop the condition.
Researchers are therefore calling for the NHS to launch a targeted monitoring programme for people at higher risk of developing blood cancer.
Earlier this year, The Independent reported that Black and Asian people who spot symptoms of various forms of cancers are taking twice as long to be diagnosed as white people due to a lethal combination of ineffective medical care, lack of trust in healthcare systems and lack of awareness.
Ms Dhokia, aged 29 at the time of her diagnosis, required an immediate stem cell transplant. Patients from ethnic minority communities with leukaemia only have a 37 per cent chance of finding a matching stem cell donor who is not a relation, compared to 72 per cent for white patients, the new Blood Cancer UK study has also found.
This procedure, also known as a bone marrow transplant, replaces damaged blood-forming cells with healthy ones, offering patients with certain forms of blood cancers “a second chance at life”.
Ms Dhokia, who is of Indian heritage, couldn’t find a donor on the register because no one was a match due to her ethnicity. It’s only because her brother and sister were willing to help that she managed to find one, resulting in two stem cell transplants in February 2021 and again in January 2023, following a relapse.
Ms Dhokia said the NHS should do more to raise awareness about blood cancer and encourage stem cell register sign-ups.
“The disparity is huge and a stem cell transplant is often our only option at having a second chance at life,” Ms Dhokia, from Ealing, told The Independent. “So, it scares me to think of what I would do in that scenario if I didn’t have my siblings,” the west Londoner said, adding that she was “shocked and upset” to learn of the racial disparity.
There’s a stigma about stem cell donations within minoritised communities and a lack of understanding that fuels fears that to “donate” a cell means to then possibly risk your health, Ms Dhokia explained, describing the new report as “alarming”.
“It’s not an invasive process,” she said. “There’s a misconception that becoming a stem cell donor involves giving up a part of your body that you won’t get back but that’s not true: you donate your stem cells, but your body regenerates those stem cells so you don’t lose anything.
“There’s a lack of education and I also think people don't often realise that for blood cancer patients a stem cell transplant is often their only cure.”
“Almost every other blood cancer patient I’ve spoken to has felt failed by the NHS, from the lack of awareness to the amount of time it takes for us to get diagnosed with blood cancer despite going to the GP multiple times,” Ms Dhokia continued.
Funding research and clinical trials are “essential”, the Blood Cancer UK report highlights, however less than a third (32 per cent) of people from ethnic minority communities reported being offered the opportunity to participate in a clinical trial, according to a separate study by the Blood Cancer Alliance.
Discrimination may be a factor behind this, Blood Cancer UK argues.
Dr Rubina Ahmed, Director of Research, Policy and Services at Blood Cancer UK, told The Independent: “Blood cancers including, leukaemia, lymphoma and myeloma, do not discriminate, they can affect anybody – whatever their age, skin colour or race, social background, disability, gender or sexual orientation. Yet evidence shows that the experience of diagnosis, treatment and outcomes can differ dramatically based on factors like ethnicity.
“Our knowledge of the true extent of inequalities is patchy at best, for example, clinical trials do not routinely publish results by race and ethnicity, so we do not know the full extent of the lack of representation in clinical research. Without robust data, we cannot begin to address the root cause of existing inequalities or monitor the effectiveness of initiatives aimed at reducing them.
“These are not easy problems to overcome, nor will they be fixed overnight but it is our duty to play our part to ensure that we reach and improve outcomes for everyone affected by blood cancer.”
The NHS has been approached for comment.
