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I’m not sure why anybody would argue with this statement, but people do.

As a disabled person, I’m furious about how very broken it is and how hard people have to work to be treated anything resembling properly. It shouldn’t be this hard, but it is – and it’s really important that we talk about it.

The system is inaccessible to many – and becoming more inaccessible each year

The first thing to recognize is that the healthcare system is broken because such a large percentage of the population of this country simply aren’t able to participate in a meaningful way.

Over 27.5 million people in the US have no insurance coverage whatsoever, with many more people being underinsured.

Why? Well, many people simply can’t afford insurance due to the way the system is built.

The most common form of coverage(55%) is supplied through an employer. Generally, to get insurance this way, you need to be a full-time employee to be eligible, and you often need to pay into the system, and pay extra to cover others in your family.

So, right there, many people are left behind. With insurance being linked directly to employment, the moment you lose a job or have your hours cut, you can no longer participate in the system.

on a white background(dry erase board), the words "Where's my health insurance?!" are written in black marker and circled in black.

Also, anybody underemployed(working less than 32-35 hours a week) for a single employer can become ineligible because they aren’t considered full time.

Many people working hourly jobs simply aren’t given the hours necessary for their employers to offer them insurance.

For those of us living with disabilities, most cannot participate in full-time work. So, we generally need to get on some form of government assistance, both for income and insurance.

The two government insurance programs available are Medicare(covering 17.8%) and Medicaid(covering 17.9%). Both of these have their own flaws.

Medicare covers everybody covered by the Social Security System. While much of this population is 65 and over, people who are disabled and have enough of a work history to be eligible also participate.

Medicaid is messier.

It’s a Federal concept that is enacted differently with different rules in every state. Under the Obama administration, states were encouraged to expand their Medicaid programs to cover more people – basically to increase the minimum accepted income to be eligible for Medicaid benefits.

In the ideal definition, Medicaid is supposed to cover all low-income people(the definition of that also varies), including disabled people and older folks who aren’t eligible for Medicare.

With each state interpreting things differently, Medicaid has become the backup insurance you hope to get, but won’t know until you apply.

The number of people who simply aren’t insured is rising, a situation badly exacerbated by COVID-19, as many employers dropped many employees causing them to lose their health insurance at a time when they were especially likely to need it.

This is why Medicare For All is so important – it’s a way to make sure that everybody is covered and increases the chance for all patients to be treated fairly.

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Health Insurance Options are intentionally complicated

If you’re fortunate enough to get health insurance, you then need to face the myriad decisions that accompany it.

Every plan has its own premium, deductible, and maximum expenses(if you’re lucky enough to have that option), and each plan has its own set of preferred networks.

Wading through the details, exceptions, exemptions, and expectations is often exhausting and difficult work, and many of these rules change annually.

Why are these plans so complicated?

Because it provides more money to the middlemen, and because it makes it that much harder for each person to pick a plan that will truly help them.

If you don’t understand your plan, you are less likely to use it, and less likely to push back if your insurance company fails to cover services.

Healthcare providers only really want healthy clients

Those of us with chronic health conditions and other disabilities face a system biased against us. Insurance companies primarily make money when they spend less on their clients than they earn in premiums.

Seeing your Primary Care Physician and getting your annual wellness check is relatively inexpensive.

Visiting multiple specialists and taking a variety of medications is much more expensive – both for you and your provider.

This is why pre-existing condition clauses were created – and why they were struck down by the Affordable Care act.

The more complicated your individual needs are, the more likely it is that your healthcare plan will either deny your coverage or put so many layers of red tape around you getting the benefits that you give up.

For most of us with disabilities, healthcare costs are a huge concern, and we often have fewer options than abled folks. We also need more medications, more specialist visits, more testing, and more treatment options.

All of these are things that make covering us more expensive and our coverage requests more complicated and frequent.

Even disabled people who are able to work and earn a reasonable income still spend a disproportionate amount of that income on their healthcare needs.

The healthcare system currently in place in the US reinforces the push of disabled people towards poverty, and of worse health outcomes for poor people.

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Marginalized people are most commonly provided the worse insurance options and experience worse health outcomes

Poor people are the most commonly uninsured, especially the working poor.

If they do have insurance, it’s likely to be Medicaid, and Medicaid coverage often includes long waits for services and struggles to find appropriate doctors, especially for mental health concerns.

While COVID-19 is raging around the world, the statistics in the US are dismal, with blacks and latinos dying from the disease at a much higher rate than whites.

Without insurance coverage, the idea of going to the doctor or to a hospital is terrifying, because medical debt is the largest reason people claim bankruptcy.

This is an experience I can testify to, as my partner, Al, had to file for bankruptcy due to his accident.

Despite having quality health insurance when he was injured, the bills still added up, especially when he realized that he couldn’t return to his job.

None of this is easy. But it sure seems like the medical system is yet another space in which bias and discrimination hold sway.

Racism and bias within the medical system

So, black and brown people often struggle to get medical support due to poverty, a multi-teired 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, 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

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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.

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.

having a medical professional who looks like you is comforting, and it can feel safer to share intimate questions and concerns

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.

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Medications are designed by white men for white men, and tested on white men

Medications themselves are impacted by racial 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 when women are included.

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 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 medication affects their bodies and genetic makeup, and the lack of doctors who look like them, is it any wonder that non-whites are concerned about seeing a doctor?

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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.

Medicare for all or another single-payer health system is a useful first step

The US is the only “first world” country that doesn’t have a single-payer health system in place.

When I say single-payer, I’m referring to the federal government as being the only source of a singular healthcare package, as opposed to our current system where there are multiple insurance companies constantly competing with one another for the clients.

This is a good thing.

It would help manage drug prices, hospital costs, and medical bills, while allowing all people to participate in the system.

It also would decrease the profit motive that insurance companies generally focus on, which would reduce the risk of corruption.

While it would not solve all of the problems mentioned in this post, it would help mitigate some of the worst problems.

Instead of having many people with no health insurance, a single-payer system would allow everybody in this country to get the medical care they need.

A black family(parents and child) looks at the contents of a folder being held by a white, female doctor.  They all are smiling slightly as they look at the information it contains
Good healthcare is easier to get when the costs are less of an issue

In turn, this would help the working poor and the disabled communities to improve our health without many of the fears that currently surround healthcare.

This also would help mitigate some of the issues Medicaid patients currently deal with, since these patients are often not able to see many doctors who make more money from patients on other forms of insurance.

Having a single-payer system would make all patients financially equivalent, so while some people may have longer waits than they are used to, it’s less likely to be due to the struggles associated with being low-income or otherwise having less-than-stellar healthcare coverage.

Having a single-payer system won’t correct the other aspects of the racial issues – we’ll still have medications primarily developed by and for white men, still have too few black doctors, and may continue to have race-based disparities in treatments and outcomes, but it’s a big step in the right direction, and one that would help not only the 27.5 million people without coverage, but also those covered by Medicaid or by low-quality plans some jobs may offer.

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Added benefit of universal healthcare: separating healthcare from employment

The biggest benefit for many, though, including the disabled community, is this: healthcare will no longer be connected with employment.

Many disabled people(including myself) hold a lot of fear around losing their disability benefits. Often the deepest-seated part of that fear is the fear of no longer having health insurance. I’ve written about working while disabled, and the bigger part of the fear has always been about losing health insurance, rather than losing the money.

Now, when you truly are in a situation where you can’t work at all, then all of it is vital, and I certainly am living on my financial benefits at the moment. But the thing that has held me back, has frightened me more, has been being without insurance.

That’s why when I’ve been doing well, I haven’t put all my energy into working and getting off my benefits – I’ve been deeply aware that even if I could earn the money my benefits currently pay me, replacing my insurance would be a much more difficult feat.

white man in wheelchair and business suit, working in an open office space at a computer

If we had universal healthcare, I’d be a lot less worried about my healthcare benefits and feel more free to focus on earning money.

This isn’t a statement about the reality of my condition – I have FND and it is extremely stress-responsive. But removing the fear of losing my healthcare would reduce my stress, and my worries wouldn’t be as severe.

Would I immediately start earning a huge amount of money? No, that’s not how business works, but it would encourage me(and many others) to think more about working, earning income, and feeling comfortable in finding a full balance between managing my condition and earning income.

On the racial front, universal healthcare would allow all people the opportunity to get wellness checks and regular testing without fear of the bill sinking them into poverty and would help take the financial aspect of the fears out of the equation.

That alone could save a huge number of lives. Many of the cancer issues mentioned above are partially due to less-frequent preventative screenings, and there’s a potential for universal healthcare programs to create more space for the deeper conversations about stress management and healthier diets to happen.

While not THE solution(we need sweeping change) going to a single-payer program would be a huge step towards fixing our broken healthcare system.

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So what can we do now?

Keep an eye on politics. Currently, getting a single-payer program is looking unlikely, as neither of the presumptive presidential candidates are endorsing such a program. Voting for senators or members of the House of Representatives who support single-payer programs may help, and asking for these social reforms may increase the chances of this occuring.

In terms of systemic racism, awareness is the first vital 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.

On the medication front, ask your doctor about the testing process for your medication(s), support policy that increases 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.

We need to question things – why these systems are the way they are, how they could be done better, and what steps it might take to fix these problems. These systems need to change, and it’s only going to happen if enough people push for it.

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8 Comments

  1. I am not surprised at the state of healthcare in the US. Earlier I would come across headlines about the system, but last year, I was in the US for specialised surgery paying out of pocket and I realised how backward the system is.

    To illustrate a simple example of the weirdness of the system – I received a bill for a list of blood tests without the blood tests being named . The bills were not itemised. There was no way for me to clarify anything. I received no help from the admin that looks after international patients. I was given the run-around for multiple issues of their billing system. It took them 8 months to send me a semi-itemised bill for all my hospital costs – doctors obviously charged separately. There was no rate card – seemed like random numbers were thrown at you after the procedure was done (because before procedure everyone is so blank about money and certain standard costs).

    Okay enough of a rant. But it made me feel lucky that I don’t need to live in this system otherwise I would really struggle to fight it and deal with my health.

    I hope things change for US because many people desperately need it to. What’s happening is just not fair.

    Thank you for explaining all this so well 🙂

    1. Thanks so much for your comment! The system is deeply flawed, and overbilling is extremely common too.
      Every hospital works with multiple insurance companies, each of which has its own rules, regulations, and costs (and cost bundling), which leads to a lot of extra paperwork. It’s all pretty disturbing, and there is a lot that needs to be done to fix it!

  2. Healthcare and wellness is so important , and it’s sad when ‘progression’ of a society becomes a regression of humanity, because that just defeats the purpose, doesn’t it.

  3. First of all, I am so sorry to hear what happened to your partner, Alison.

    This is a super comprehensive breakdown of health care in America. I catch bits and pieces here and there, but rarely all in one place. I mentioned passing your videos on to my husband. I will forward your article to him as well because there is no way we are moving back during all this.

    As for your comments on books about medical bias and history, this is a favorite topic for me. I have read books for the examples you mentioned and I also just read Being Mortal by Atul Gawande, which focuses on health care at the end of life – yet another example of how the US is failing another population – our seniors. (His book does give hope, though. Beautiful read.)

    Regarding how women are treated (or ignored), my eyes were wide open after reading Invisible Women: Data Bias in a Male Dominated World. It made me pretty mad! But sometimes anger is good for me because it challenges me to address these types of things head on.

    Great tips on what to ask and how to work with doctors in this current broken state of affairs. I hope it gets easier for everyone.

    1. Thanks for your thoughts, we are getting through alright.
      Thanks so much for sharing these recommendations! The system is so broken, it’s vital to recognize that first, then work around those issues. It’s really important to affirm that we aren’t the problem, and it’s not our fault the system is broken.
      Then we need to take a deep breath and make sure we get the care we need, despite the system being broken!

  4. As someone who spends a lot of time in hospitals I have to admit that I’ve never thought much about medical bias. And yet, unconsciously, I know it’s true. I am grateful you’ve exposed me to different thoughts on what’s happening behind the doors and I look forward to thinking through this more.

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