Let’s start with the terms themselves.
Systemic racism is a deep-rooted issue in the US, and one that many conservatives don’t want to admit even exists. When it comes to our broken healthcare system, racism is one of many ‘isms’ buried within it.
Ableism is also a systemic issue, and one that is deeply entrenched in the medical community.
Many people, including those of us with disabilities, have ableist thoughts, beliefs, and reactions. Doctors are human too, and part of society, so they also have some implicit bias against the disabled identity, which is expressed in a variety of ways.
Systemic ableism is rampant and built into all aspects of society, so of course it influences the medical community as well.
All too often, it is the medical community that defines the disabled identity and determines if and what sort of treatment we can receive.
Simply getting health insurance can be a major issue for those of us with high medical needs and low income. All too often, if we get health insurance at all, it’s likely not to fully cover our needs.
Because health insurance is so closely tied to employment and income, poor people generally have worse health coverage and fewer options for medical care. A disproportionate number of minorities are poor, and therefore have fewer options while facing more bias and discrimination.
Intersectionality plays a part in this as well, as people with multiple marginalized identities(such as being Black, poor, and disabled) face a much greater likelihood of experiencing discrimination based on any or all of their identities.
Racism and bias within the medical system
So, black and brown people often struggle to get medical support due to poverty, a multi-tiered healthcare system that frequently ignores them, and poor insurance coverage.
But that’s not all.
Once inside the hospital or doctor’s office, things often get worse.
There is a strong bias in the Emergency departments against people of color and against any and all forms of mental illness.
Especially in emergency departments, if they can’t see it, they don’t believe in it.
One (of many) things that inspired that post, was the story of Tashonna Ward, a black woman who died after she waited for hours at a hospital to be seen. She collapsed and died while seeking quicker service.
During Covid-19, nurses are often expected to assess patients and determine who needs to be handled next, and who is closest to a crisis point.
Implicit bias in nurses makes it more likely that black, brown, and/or disabled patients are likely to be given lower priority in treatment.
Again, processes like triage usually involve a variety of factors and decisions are often made subconsciously(call it instinct, if you want to). Generally, that is bad news for marginalized identities.
As the Black Lives Matter movement continues its protesting, I want to make sure that people realize that bias in health care is a systemic and ongoing issue.
It’s not just about police brutality against minorities.
It’s also about all of the other broken systems that are either actively killing black people, or are keeping black people from getting proper supports.
Unfortunately, the US healthcare system doesn’t have the best record for actually taking good care of black patients
Historically undervalued: medical abuse of black people
Black people have good reasons to mistrust the medical community. The historical ethical violations(and lack of consideration or repayment by the scientific community) has been severe.
- James Marion Sims gained his expertise and experience in gynecology by experimenting on black women without anesthesia.
- The Tuskegee experiment occurred from 1932-1972, where white doctors studied the impacts of syphilis on black men, without telling them that they had the condition and without allowing appropriate treatment(which was discovered in the early 1940’s). In many cases, the wives and children of these men also contracted syphilis.
- Henrietta Lacks died in 1951, but her cells are used in cancer research to this day. Her entire genome was sequenced and shared publically a few years ago – and all of this was done without her descendent’s knowledge or consent – or reimbursement for their use.
- In the 1990’s, a prestigious US university ran a study on (only!) black boys, testing a theory that aggression had a genetic basis. It involved a variety of ethical violations.
If you really want to know more – there is an entire book on the subject! The author, Harriet Washington, documented what she could find on this history.
Racial biases in medical testing and treatment
On top of these flagrent ethical violations of black people by white medical professionals, there have also been many cases of biased mythologies, beliefs, and neglect carried out by the medical profession.
Doctors are people too, and so many participate in our discriminatory society.
A disturbing number of medical students hold onto false beliefs about racial differences, leading to many black people(especially black women) being undermedicated when it comes to pain management and similar issues.
Studies have shown that health care professionals also experience a bias against dark-skinned people and towards whites.
These biases significantly impacted patient-provider interactions, treatment decisions, treatment adherence, and health outcomes.
In plain English – the bias impacted how the doctors and their patients communicated with one another, what treatments the doctor recommended, how well the patients followed their treatment instructions and the patient’s health.
The bias is real, and black people know it. They experience it. And that makes them less eager to see doctors – which is completely understandable.
The health of black men tends to improve when their doctors are also black, but there simply aren’t enough black doctors out there – which is yet another sign of institutional racism(why do so few black men graduate from medical school?)
Black people, especially black men, are more likely to have stress-associated conditions, have higher death rates than whites, and get unnecessary amputations.
Bias against patients with disabilities
Racism isn’t the only issue within the health care system.
There is a strong stigma among doctors against people with disabilities.
All too often, doctors don’t believe that people with disabilities can live a similar quality life to abled peers, which influences all decisions and recommendations they make for their patients’ care.
Mental health stigma is very real as well. Patients who have mental health diagnoses too often find their very physical symptoms dismissed due to their psychiatric condition.
Stigma against mental illness is universal, and often prevents early recognition and treatment of conditions, leading to further negative responses.
No matter what condition needs treatment, people with a mental illness diagnosis are too often dismissed, ignored, or mistreated by the very people who are supposed to help us.
Diagnosis of a chronic health condition increases the risk of developing depression or associated mental illnesses.
So even if you didn’t have a mental illness prior to developing your chronic condition, your chances of developing one increases dramatically with your symptoms/diagnosis – and understandably so!
Ableism has become even more obvious during the Covid-19 pandemic.
As an intersectional social identity, the disabled community, especially those with mental health conditions, faces bias in health care.
Medications are designed by abled white men for white men, and tested on white men
Medications themselves are impacted by racial bias. They’re also impacted by gender bias.
While many races participate in phase I of human medication trials(paid trials to check for negative symptoms or effects), participants in phase III trials (testing the effectiveness of the medications) are primarily white(and often male).
All too often, doctors simply don’t know how effective these medications may be in patients who aren’t white men.
Also, while there are differences in male and female disease patterns and responses to medication, women are rarely included in studies, and in many cases, this basic difference isn’t considered in testing results even when women are included.
What I mean is that even when women(and/or minorities) are part of the study, the results are usually averaged together, without searching for patterns in results(such as if the white men do well, but the women involved don’t)
So, the US, where many medications are created and tested, doesn’t consistently explore racial or gender differences in researching medications and treatments.
Again, there are definitely some cases in which these differences are essential to treatment – but in too many cases, nobody bothers to check, or nobody other than white men are part of the trial.
By doing this, we only are certain about how the medication impacts white men, and those of us of a different gender or race are left in the cold, for our doctors to guess our best options and correct dosages.
Underrepresentation within the medical community
People generally, naturally, feel more comfortable with others who are more similar to them. The more intimate or trust-intensive the situation, the more important this can be.
Few things are more intimate than a deep dive into your medical needs with your doctor.
Having a doctor willing and able to understand your needs, especially the ones you may not be aware of or might be uncomfortable verbalizing, is essential.
Unfortunately, there isn’t as much diversity in doctors as there is in patients.
While about 13% of the US population is black, only 5% of physicians identified as black according to the AAMC.
The difference is even starker for disabilities, where an estimated 20% of the US population is has a disability, but roughly 3% of doctors identify as disabled. Many of these doctors also have other marginalized identities.
The numbers are becoming more diverse, but still, finding a doctor that is likely to be understanding and accepts your insurance can be extremely challenging.
It’s hard to feel safe or comfortable when you see few people like you.
Between the history of unethical treatment listed above, the lack of research into how the medication affects their bodies and genetic makeup, and the lack of doctors who look like them, is it any wonder that minority identities are concerned about seeing a doctor?
Even automated systems have bias!
Because so much of medical history is biased towards abled white men, and abled white men do so much of the designing of all of society’s structures(both physical and theoretical), pretty much all Artificial Intelligence also have this bias.
Programmers(most of whom are abled white men) design them, then use data primarily focused on abled white men, and so of course the results are going to be most accurate for abled white men!
While programmers for other types of apps try to minimize bias by excluding racial or gender-based data, health-related programs often must have this information. While work is being done to combat this bias, it is an ongoing and difficult process.
Here is one creative workaround
This is a problem that’s been recognized for a while, and there are groups and individuals out there who have worked towards fixing the challenge of providing healthcare to black men, who often don’t end up seeing doctors regularly, due to the issues listed above.
One of the solutions I’ve learned about is providing healthcare in barber’s shops! Here’s the TED talk on the topic.
As a social hub for many black men, being able to get support for stress-associated conditions like heart disease in a low-stress environment really helped them better understand their condition, and how to take better care of themselves.
What can you do?
Some hospitals, doctors, and organizations are taking steps to try to fix these associated issues.
Awareness of systemic racism is the first step. You can’t solve a problem until you recognize there is one.
Now that you know, do some research and see if there are nonprofit programs designed to help ensure quality health care for those who don’t have it, or programs that work to increase diversity in medical school and other medical settings.
Look for policy changes on any level of government that may help provide better medical support for social outliers, such as black people, Latinos, members of the LGBT community or programs that focus specifically on disabilities. Support these programs as you can, and help raise awareness of these concerns with others.
This information also can help prepare you for potential challenges – both in the sense of being aware of what could happen(and why), and as a self-advocacy tool.
Call out potential bias when you see it, and do your best to find other options if you suspect a doctor is discriminating against you.
If your doctor minimizes your symptoms or otherwise gaslights you, push back and be insistent on your needs.
Find alternative options if possible, but don’t be afraid to call the bias out for what it is, file appropriate complaints, and push for the treatment you need and deserve.
You should be in control of your medical care and there usually are some options out there. Call out discrimination as you see it, and keep pushing back until your needs are met.
On the medication front, ask your doctor about the testing process for your medication(s), support policy that increases the diversity of phase III clinical trials, and if you are a minority identity, keep an eye out for reasonable-sounding clinical trials that might meet your needs.
If you want to participate in clinical trials, here is an additional site to explore: https://clinicaltrials.gov/
Also, know that work is being done to correct these issues.
It’s slow, but it is happening.
I attended a virtual conference that had several talks on the topic of diversifying study participation earlier this month.
Most drug companies are aware of the bias issue and have some staff working on it. Many of the folks working on fixing the issue are minorities themselves.
Progress is being made, and steps are being taken in the right direction.
You also can protect yourself now by participating in discussion groups, making sure your diagnosis is correct, and doctor shopping.
You deserve the best possible treatment. While you may not be getting it, due to bias, discrimination, or geographical challenges – you do still deserve to get it.
Keep searching until you find a way to get the treatment you need from doctors who will support you.