This blog post is a copy of my blog for Yes to Life (see here) - it is part of our journey to understand what we need to do at Yes to Life. We welcome thoughts from others, in terms of actions but also already have a number of actions in place. You can also see blog last year re stall we had in Gloucester to raise awareness. I also wanted to honour again Saima and her work; she will be so missed by so many.
The
outrage following George Floyd’s death and the disproportionate impact
of COVID-19 on Black, Asian and Ethnic Minorities (BAME) communities (i)(i)
are powerful reminders of how much action is still needed in terms of
racism and inequality. This is not a new issue. It has been staring at us in plain view
for decades. But sadly recent events are a loud and much needed wake up
call to us all. The message is clear: racism is experienced daily, from
what some have described as ‘casual’, to much more serious incidents.
It is easy to make statements about how awful racism is but it’s how we behave every day that really counts. How can I be a better ally? What do I do every day that can unwittingly perpetuate racism and discourages an environment of equality that welcomes all? How can we be allies in tackling racism in our communities? How can Yes to Life better serve black and other ethnic minority communities?
We know the experience of cancer is not the same for everyone. Black people have greater obstacles to cancer prevention, treatment, clinical trial participation (ii) and many other challenges. BAME cancer survivors die of cancer at higher rates than other groups (iii). This is unacceptable.
Prostate and Breast cancer – two examples
Prostate cancer: 1 in 4 black men will get prostate cancer in their
lifetime whereas national figures show a 1 in 8 chance of white men
getting prostate cancer (iv). It has been hypothesised that the disease
was biologically more aggressive in black men. However a large new US
study has found that with equal care, African American and white men
have the same prostate cancer survival outcomes (v). This doesn’t mean
there are not biological differences, but it does mean we should not
allow such differences to distract us from the fact that there is much
work to do in terms of access to care.
Breast cancer: Black women are more likely than white women to die of breast cancer. We don’t know all the reasons for this difference, but biology does play a role. Black women tend to have more aggressive forms of breast cancer (vi), and those under 35 are twice as likely (vii) as white women of the same age to get breast cancer. The biggest impacts are again around access to care (viii).
Role of racism?
The reasons why some groups in society are hit harder than others are complex and relate to structural and socio-economic inequalities. In recent years we have seen some slight improvement in the racial disparities (ix), but the gap is still there and more research is needed to understand the factors involved. It is clear that without more understanding and data on cancer and ethnicity the experiences of the cancer journey will continue to be worse for people in BAME communities (x).
It was shocking to discover that there is so very little research looking at racism and cancer. Indeed the term ‘racism’ is rarely used in medical literature, and all too often we see the differences in cancer survival rates – as in the case of prostate and breast cancers – explained away by implying that it is mainly due to genetic differences between races.
We don’t like to think that racism or discrimination plays a part in health outcomes, but as Marmot and Wilkinson concluded in 2005, an “adequate understanding of racism is fundamental to an understanding of ethnic inequalities in health” (xi). Some studies directly associate discrimination with such racial disparities in cancer survival rates (xii). There are also studies, such as one in 2016, which found that many medical students were approaching their patients with an underlying and unconscious bias that influenced how, for example, they measured and distributed pain relief (xiii).
Our health system is an institutionally racist system. A deeply worrying NHS England Report earlier this year shows that BAME staff are suffering from increasing levels of bullying, harassment, and abuse (xiv). Prof Donna Kinnair, writing on racism in the NHS in The Guardian earlier this month, said: ‘In every community, BAME patients suffer the most’ (xv).
Cancer stigmatised in some communities
Leanne Pero, quoted in ‘Glamour’, shares how cancer is stigmatised in the black community (xvi); “There’s a lot of shame. You keep it within your family, you don’t talk about it. Black women have been told cancer ‘isn’t a black disease’ or that it’s karma or a curse for something we’ve done in the past. The worst thing is lots of women have been told not to get chemotherapy or life-saving drugs, because it’s ungodly…I’ve been presented with stories from women who had been banished from family events so as not to upset others. People were worried about catching it from them. One of the women was even told ‘don’t worry, I won’t tell anyone,’ when she told her family about her diagnosis. It’s seen as something embarrassing and shameful.”
Leanne joined Saima Thompson at last year’s Trew Fields cancer
awareness festival (see photo), to talk about such cultural factors (see
great video here) (xvii).
Saima sadly died on 27th June and this is a huge loss; she was such a
determined, warm and inspiring trailblazer (xviii). Many, including
myself, have been touched deeply by her enthusiasm, energy – and indeed
the change she has been creating around BAME and cancer.
Saima and Leanne have both been tireless in sharing how cultural myths around cancer are stopping people from getting checked if they feel something is not right, and how such views impact on health outcomes. You can see Saima Thompson’s blog and the many ways she worked to create awareness and change around cancer at: www.curryandcancer.com There is also the ‘BAME Cancer Support’ group on Facebook that she established.
There is more from Leanne Pero at www.leannepero.com
and the Black Women (and Men) Rising project she helped establish with
monthly online support groups and podcasts that she co-hosted with Saima
(xiv).
Access to complementary approaches
Yes to Life is the UK’s integrative cancer care charity (xv). Integrative Medicine is the judicious combining of conventional treatments such as chemotherapy, radiotherapy and surgery, with lifestyle and complementary therapies, to broaden patient choice, increase patient engagement, improve quality of life and extend survival. It’s a ‘best of both worlds’ scenario that has its roots in the patient perspective. Yet similarly to other challenges around access to good health care, studies have found that black people are also less likely to use complementary medicine than white people (xvi). What can be done to improve access for all?
Taking action
At Yes to Life we stand against those who perpetuate racism and
violence, and stand in solidarity with those demanding equality. We must
speak out against racism and be actively supportive of anti-racist
movements, especially those of us in positions of influence. Racism is
so deeply entrenched that visible actions are needed.
As a charity we will seek to work with others to make sure that cancer services and care are available to all, equally. We all need to look at what we do, to catch our unwitting racism and do something about it. We know we can improve the ways in which we engage with the black community. To be silent on this issue is to be complicit.
Our thoughts are with Saima’s family and friends.
Find out more at: www.wigwam.org.uk
Notes
(i) Covid-19 and racism: https://www.theguardian.com/society/2020/apr/29/extra-18000-cancer-patients-in-england-could-die-in-next-year-studyand https://www.theguardian.com/world/2020/jun/05/uk-equality-watchdog-to-launch-inquiry-into-entrenched-racism
(i) Update 28/07/20: I note that there are problems with using the term BAME: https://www.bbc.co.uk/news/uk-53194376
(ii) Black Patients Miss Out On Promising Cancer Drugs: https://www.propublica.org/article/black-patients-miss-out-on-promising-cancer-drugs
(iii) ’The Rich Picture, People with Cancer from BME Groups’ Macillan report: https://www.macmillan.org.uk/_images/bme-groups_tcm9-282778.pdf
(iv) https://prostatecanceruk.org/get-involved/black-men-and-prostate-cancer and see research (2008-10): https://pubmed.ncbi.nlm.nih.gov/26224061/
(v) https://acsjournals.onlinelibrary.wiley.com/doi/abs/10.1002/cncr.32666
(vi) A Population-Based Study From the California Cancer Registry: https://pubmed.ncbi.nlm.nih.gov/17387718/
(vii) Racial/ethnic Variation in Clinical Presentation, Treatment, and Survival Among Breast Cancer Patients Under Age 35: https://pubmed.ncbi.nlm.nih.gov/12491515/
(viii) Breast Cancer Disparities at home and abroad: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5499686/#R65
(ix) Structural Racism & Breast Cancer Deaths Among Black Women in Chicago:https://hcfdn.org/structural-racism-breast-cancer-deaths-among-black-women-in-chicago/ and Racial Discrimination and Breast Cancer Incidence in US Black Women: The Black Women’s Health Study: https://academic.oup.com/aje/article/166/1/46/135692
(x) No One Overlooked: Experiences of BME people affected by cancer’ Macmillan report 2015: https://www.macmillan.org.uk/documents/aboutus/research/inclusionprojects/experiencesofbmepeople.pdf
(xi) The social determination of ethnic/racial inequalities in health (2005) Michael Marmot and Richard G. Wilkinson: https://www.oxfordscholarship.com/view/10.1093/acprof:oso/9780198565895.001.0001/acprof-9780198565895-chapter-12.
(xii) Perceived Discrimination, Coping, and Quality of Life for African-American and Caucasian Persons with Cancer: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4819019/ and Impact of Perceived Racial Discrimination on Health Screening in Black Women: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3760200/
(xiii) Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843483/
(xiv) 2019 report: https://www.england.nhs.uk/wp-content/uploads/2020/01/wres-2019-data-report.pdf
(xv) Prof Donna Kinnair on racism in the NHS: ‘In every community, BAME patients suffer the most’: https://www.theguardian.com/world/2020/jun/10/donna-kinnair-racism-nhs-if-you-arent-white-your-illness-isnt-taken-as-seriously
(xvi) Black women with cancer are treated differently to white women. Fact. Let’s change that…”Our voices need to be heard”: https://www.glamourmagazine.co.uk/article/black-women-cancer
(xvii) Video of Saima and Leanne at Trew Filelds Festival 2019:https://vimeo.com/user104087161
(xviii) Pioneering Restaurateur Saima Thompson Used Her Cooking to Create Space for Others – Remembering the co-founder of Masala Wala Cafe, who used her platform to build visibility and ownership for women in the Pakistani community: https://london.eater.com/2020/7/1/21309839/saima-thompson-masala-wala-cafe-obituary-curry-cancer
(xiv) And podcasts at: https://podcasts.google.com/?feed=aHR0cHM6Ly9hbmNob3IuZm0vcy8xZGQ5ZWM2Yy9wb2RjYXN0L3Jzcw&ved=2ahUKEwjSrua9o-jpAhUCNxoKHcsEAKcQ4aUDegQIARAC&hl=en-GB
(xv) https://yestolife.org.uk/
(xvi) Racial and Ethnic Profiles of Complementary and Alternative Medicine Use Among Young Adults in the United States: Findings From the National Longitudinal Study of Adolescent Health: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3711674/ and Racial/Ethnic Differences in the Use of Complementary and Alternative Medicine in US Adults With Moderate Mental Distress: Results From the 2012 National Health Interview Survey: https://journals.sagepub.com/doi/full/10.1177/2150131916671229
 |
| My photo from Trew Fields last year: Saima and Leanne |
It is easy to make statements about how awful racism is but it’s how we behave every day that really counts. How can I be a better ally? What do I do every day that can unwittingly perpetuate racism and discourages an environment of equality that welcomes all? How can we be allies in tackling racism in our communities? How can Yes to Life better serve black and other ethnic minority communities?
We know the experience of cancer is not the same for everyone. Black people have greater obstacles to cancer prevention, treatment, clinical trial participation (ii) and many other challenges. BAME cancer survivors die of cancer at higher rates than other groups (iii). This is unacceptable.
Prostate and Breast cancer – two examples
 |
| Cotswolds Prostate Cancer Support Group, Jamaica Independence Day, Gloucester Aug 2019 |
Breast cancer: Black women are more likely than white women to die of breast cancer. We don’t know all the reasons for this difference, but biology does play a role. Black women tend to have more aggressive forms of breast cancer (vi), and those under 35 are twice as likely (vii) as white women of the same age to get breast cancer. The biggest impacts are again around access to care (viii).
Role of racism?
The reasons why some groups in society are hit harder than others are complex and relate to structural and socio-economic inequalities. In recent years we have seen some slight improvement in the racial disparities (ix), but the gap is still there and more research is needed to understand the factors involved. It is clear that without more understanding and data on cancer and ethnicity the experiences of the cancer journey will continue to be worse for people in BAME communities (x).
It was shocking to discover that there is so very little research looking at racism and cancer. Indeed the term ‘racism’ is rarely used in medical literature, and all too often we see the differences in cancer survival rates – as in the case of prostate and breast cancers – explained away by implying that it is mainly due to genetic differences between races.
We don’t like to think that racism or discrimination plays a part in health outcomes, but as Marmot and Wilkinson concluded in 2005, an “adequate understanding of racism is fundamental to an understanding of ethnic inequalities in health” (xi). Some studies directly associate discrimination with such racial disparities in cancer survival rates (xii). There are also studies, such as one in 2016, which found that many medical students were approaching their patients with an underlying and unconscious bias that influenced how, for example, they measured and distributed pain relief (xiii).
Our health system is an institutionally racist system. A deeply worrying NHS England Report earlier this year shows that BAME staff are suffering from increasing levels of bullying, harassment, and abuse (xiv). Prof Donna Kinnair, writing on racism in the NHS in The Guardian earlier this month, said: ‘In every community, BAME patients suffer the most’ (xv).
Cancer stigmatised in some communities
Leanne Pero, quoted in ‘Glamour’, shares how cancer is stigmatised in the black community (xvi); “There’s a lot of shame. You keep it within your family, you don’t talk about it. Black women have been told cancer ‘isn’t a black disease’ or that it’s karma or a curse for something we’ve done in the past. The worst thing is lots of women have been told not to get chemotherapy or life-saving drugs, because it’s ungodly…I’ve been presented with stories from women who had been banished from family events so as not to upset others. People were worried about catching it from them. One of the women was even told ‘don’t worry, I won’t tell anyone,’ when she told her family about her diagnosis. It’s seen as something embarrassing and shameful.”
 |
| Screenshot from Trew Fields video |
Saima and Leanne have both been tireless in sharing how cultural myths around cancer are stopping people from getting checked if they feel something is not right, and how such views impact on health outcomes. You can see Saima Thompson’s blog and the many ways she worked to create awareness and change around cancer at: www.curryandcancer.com There is also the ‘BAME Cancer Support’ group on Facebook that she established.
Access to complementary approaches
Yes to Life is the UK’s integrative cancer care charity (xv). Integrative Medicine is the judicious combining of conventional treatments such as chemotherapy, radiotherapy and surgery, with lifestyle and complementary therapies, to broaden patient choice, increase patient engagement, improve quality of life and extend survival. It’s a ‘best of both worlds’ scenario that has its roots in the patient perspective. Yet similarly to other challenges around access to good health care, studies have found that black people are also less likely to use complementary medicine than white people (xvi). What can be done to improve access for all?
Taking action
At Yes to Life we stand against those who perpetuate racism and
violence, and stand in solidarity with those demanding equality. We must
speak out against racism and be actively supportive of anti-racist
movements, especially those of us in positions of influence. Racism is
so deeply entrenched that visible actions are needed. As a charity we will seek to work with others to make sure that cancer services and care are available to all, equally. We all need to look at what we do, to catch our unwitting racism and do something about it. We know we can improve the ways in which we engage with the black community. To be silent on this issue is to be complicit.
Our thoughts are with Saima’s family and friends.
Find out more at: www.wigwam.org.uk
Notes
(i) Covid-19 and racism: https://www.theguardian.com/society/2020/apr/29/extra-18000-cancer-patients-in-england-could-die-in-next-year-studyand https://www.theguardian.com/world/2020/jun/05/uk-equality-watchdog-to-launch-inquiry-into-entrenched-racism
(i) Update 28/07/20: I note that there are problems with using the term BAME: https://www.bbc.co.uk/news/uk-53194376
(ii) Black Patients Miss Out On Promising Cancer Drugs: https://www.propublica.org/article/black-patients-miss-out-on-promising-cancer-drugs
(iii) ’The Rich Picture, People with Cancer from BME Groups’ Macillan report: https://www.macmillan.org.uk/_images/bme-groups_tcm9-282778.pdf
(iv) https://prostatecanceruk.org/get-involved/black-men-and-prostate-cancer and see research (2008-10): https://pubmed.ncbi.nlm.nih.gov/26224061/
(v) https://acsjournals.onlinelibrary.wiley.com/doi/abs/10.1002/cncr.32666
(vi) A Population-Based Study From the California Cancer Registry: https://pubmed.ncbi.nlm.nih.gov/17387718/
(vii) Racial/ethnic Variation in Clinical Presentation, Treatment, and Survival Among Breast Cancer Patients Under Age 35: https://pubmed.ncbi.nlm.nih.gov/12491515/
(viii) Breast Cancer Disparities at home and abroad: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5499686/#R65
(ix) Structural Racism & Breast Cancer Deaths Among Black Women in Chicago:https://hcfdn.org/structural-racism-breast-cancer-deaths-among-black-women-in-chicago/ and Racial Discrimination and Breast Cancer Incidence in US Black Women: The Black Women’s Health Study: https://academic.oup.com/aje/article/166/1/46/135692
(x) No One Overlooked: Experiences of BME people affected by cancer’ Macmillan report 2015: https://www.macmillan.org.uk/documents/aboutus/research/inclusionprojects/experiencesofbmepeople.pdf
(xi) The social determination of ethnic/racial inequalities in health (2005) Michael Marmot and Richard G. Wilkinson: https://www.oxfordscholarship.com/view/10.1093/acprof:oso/9780198565895.001.0001/acprof-9780198565895-chapter-12.
(xii) Perceived Discrimination, Coping, and Quality of Life for African-American and Caucasian Persons with Cancer: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4819019/ and Impact of Perceived Racial Discrimination on Health Screening in Black Women: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3760200/
(xiii) Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843483/
(xiv) 2019 report: https://www.england.nhs.uk/wp-content/uploads/2020/01/wres-2019-data-report.pdf
(xv) Prof Donna Kinnair on racism in the NHS: ‘In every community, BAME patients suffer the most’: https://www.theguardian.com/world/2020/jun/10/donna-kinnair-racism-nhs-if-you-arent-white-your-illness-isnt-taken-as-seriously
(xvi) Black women with cancer are treated differently to white women. Fact. Let’s change that…”Our voices need to be heard”: https://www.glamourmagazine.co.uk/article/black-women-cancer
(xvii) Video of Saima and Leanne at Trew Filelds Festival 2019:https://vimeo.com/user104087161
(xviii) Pioneering Restaurateur Saima Thompson Used Her Cooking to Create Space for Others – Remembering the co-founder of Masala Wala Cafe, who used her platform to build visibility and ownership for women in the Pakistani community: https://london.eater.com/2020/7/1/21309839/saima-thompson-masala-wala-cafe-obituary-curry-cancer
(xiv) And podcasts at: https://podcasts.google.com/?feed=aHR0cHM6Ly9hbmNob3IuZm0vcy8xZGQ5ZWM2Yy9wb2RjYXN0L3Jzcw&ved=2ahUKEwjSrua9o-jpAhUCNxoKHcsEAKcQ4aUDegQIARAC&hl=en-GB
(xv) https://yestolife.org.uk/
(xvi) Racial and Ethnic Profiles of Complementary and Alternative Medicine Use Among Young Adults in the United States: Findings From the National Longitudinal Study of Adolescent Health: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3711674/ and Racial/Ethnic Differences in the Use of Complementary and Alternative Medicine in US Adults With Moderate Mental Distress: Results From the 2012 National Health Interview Survey: https://journals.sagepub.com/doi/full/10.1177/2150131916671229
"Structural racism is a fundamental cause and driver of ethnic disparities in health...The UK government report on race disparities is a missed opportunity" https://blogs.bmj.com/bmj/2021/03/31/structural-racism-is-a-fundamental-cause-and-driver-of-ethnic-disparities-in-health/
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