In the last (at least for now) installment of the Race and Vaccines series, let us turn our attention to possible ways to address disparities in how the current crises has been handled in different cohorts, but also ways to impact the issue of medical racism as a whole.
This pandemic has shone a bright and unsparing light on how medical care is delivered. It has also brought to sharp relief the often wide differences in how different people groups access and experience care in this country.
None of it should be new; there have always been yawning divides in the healthcare delivery system; starting from when healthcare was tied to having a good enough job which provided it, to where healthcare delivery systems are located, to how medical professionals and paraprofessionals are trained, to how ingrained and unconscious bias influences how patients are heard, believed, treated, and honored and respected.
What is also not new is how the narrative of the pandemic has been told and reported; one only needs to look at another global health crisis, HIV/AIDS, to see that how health crises are responded to depends, to an unsettling degree, on the populations affected.
Before Ryan White, a white teenager with hemophilia who contracted HIV from a tainted blood supply in 1984, HIV/AIDS, the disease, as reported by the media and by political leaders, was considered more contagious (as in airborne rather than almost solely transmitted via exchange of bodily fluids) than it actually is, and was largely believed to be confined by two groups which elicited little sympathy or compassion from the general public: men who slept with other men, and intravenous drug users, who were mostly perceived as Black or brown.
That perception did two things: increased oppressive stigma of those two groups, and also hindered focused research on slowing and mitigation of the disease. That changed somewhat when actor Rock Hudson acknowledged his HIV in 1985, and again when Freddie Mercury died from complications of the disease in 1991.
What truly shifted the tide though was with Ryan White’s struggle with the disease; he was considered ‘relatable’ and ‘innocent’, because he contracted the virus in a way not perceived as distasteful by politicians, the media, or the public.
In the years since, not least because of the influence of Ryan White (and also because of focused and effective activism from the LGBT community; read “And The Band Played On” by Randy Shilts) , and governments making the disease a priority, now, 37 years after White was diagnosed, strides have been made in AIDS treatment, but disparities still abound. Issues of access, cost–and lowered, but still pervasive stigma–still make for different outcomes in diagnosis, treatment, prognosis, and lifespan for different cohorts.
And this as well: when the pendulum of who contracted the disease swung from marginalized populations to more ‘mainstream victims’ research and support blossomed; this is less true now, as the pendulum swung back to those most vulnerable, particularly with Black women (who are now (incorrectly) considered to be one of the groups most infected), who are also often innocent victims, but who are not treated as such.
There are parallels to the AIDS crisis, which began over 40 years ago, and how COVID has played out.
What is new this time has been the pervasiveness of the pandemic. Even with diverse populations potentially at risk, it is different for COVID, where, at least initially, it was considered to be a ‘democratic’ disease–affecting all populations equally.
And it might have, were it not for healthcare disparities which lessened and mitigated risk and granted enhanced prevention and treatment for some populations, while at the same time exacerbating risk by making mitigation and seclusion almost impossible for others. Add to that issues of access in general for the most vulnerable populations, and disparities in quality of care among demographics, and the burden of suffering and death is stunningly disproportionate.
With studies coming out showing vastly different rates of infection, hospitalization and death among different racial groups, it is clear that this disease is not democratic at all. The data is sobering.
There are many lessons that were learned, and at least somewhat internalized by the AIDS crisis; some of which were actually internalized and applied here.
But, as with every public health issue which becomes a societal issue, which becomes a policy issue, which then devolves into a political issue, lessons learned are not always generalized and applied to the new issue facing us.
Indeed, in the over forty years since HIV, little has changed in terms of access, quality of care, and mortality rates. In fact, with the consolidation of hospitals and medical groups (many leaving nonprofit status and going for profit, which affects mission, motivation, and money), as well as changing dynamics in the pharmaceutical industry, things have gotten worse.
We talked about access in another discussion in the series; how just trying to access care can often turn into denial of care, or at least timely and effective care.
This needs to change. Medical providers, insurers, hospitals need to prioritize locating full service medical centers (not just basic clinics) in impacted areas.
It is not ok that major healthcare groups are allowed to ‘cherry pick’ which populations get more access. When considering new construction (and closings) of medical centers and hospitals, policymakers should take a close look at the map. In San Diego, healthcare is concentrated in some areas and virtually nonexistent in others; and I am absolutely sure the same is true wherever one is located in the country.
It is true that some of these disparities are driven by money more than race; but then again money *is* so often driven by race. Most specifically for the purposes of this discussion, Medicare rates vs. Medicaid rates. Medicaid rates are lower; sometimes much lower, than Medicare, which is in turn lower than ‘retail’ rate cards.
As well, and every bit as important, the perception that Black and brown people, when we do manage to access care, will be less compliant, that we are ‘drug seeking’, that we have higher pain tolerances, and that our maladies are almost always deemed as ‘lifestyle choices, in that we have higher rates of Type II diabetes, hypertension, heart disease and liver disease (all ways of blaming the victims) are also part of the problem. The lack of trust in the healthcare system between the medical providers (often justified) and the Black and brown patients in need of care, needs to be addressed. Last December, a Black woman physician died of COVID after not being believed, and receiving substandard care.
If Dr. Moore had what turned out to be a grave outcome, how much more true is it for ‘ordinary’ patients?
Additionally, infrastructure, not just building of hospitals, but also the means to get patients there, needs to be addressed.
Just as major corporations have moved to the suburbs, making it harder for urban residents to access jobs, so has the medical industry. Reliable public transportation is a must, as is affordability and scheduling.
Finally, there needs to be a public agreement that everyone is entitled, by virtue of breathing, to competent, compassionate, and accessible healthcare that people are not ultimately afraid to access.
What can we do? We can ask our own healthcare providers what they are doing, not just for us and for our immediate families, but for the community as a whole. Look at where your clinics and hospitals are located. Ask for mortality rates by demographic. Ask your local and state lawmakers what they are doing to make healthcare as a whole more accessible and equitable, and what they are doing in particular for COVID to insure equity and just treatment for all of their residents.
And if they are not willing to answer, persist.
Literally, lives hang in the balance.
Other articles in this series:
Vaccine Strata
Redlining in the Time of the Pandemic
Read Lace’s Thoughts about Inoculations in the April 2021 Newsletter
Join us in the Bistro discussion below!
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I spend 40+ hours of my week working in the healthcare industry. The inequities are vast. Again and again I see Medicaid clients struggle to receive equitable care, to be taken seriously, stigmatized and gaslighted. I advocate for them, but often feel at a loss for how vast the deficits are. I also notice how easy it is to “blame the system” rather than investigate my part in it…times when I’ve been “too tired” and shortened a phone call to check in or advocate, times when I’ve stood back for my own self preservation from fighting louder, harder because I valued being liked by a colleague over a needed call-out. I’ve gotten better and those I work with know where I stand now more than they did before, but I have to continue pushing and always be looking inward for those internalized stigmas that can hurt others the worst.
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I have a relative who has the CA version of Medicaid, and it doesn’t pay for a large amount of the medical care that he needs just for basic function, not even enough functionality to hold any sort of job. Other family members pay those extra costs. Because we are white we have generational wealth that can make up for the shortcomings of California-care and for the gaslighting he received when he tried to apply for disability. His situation is much better off than if he were Black or brown both from the generational wealth perspective and also from the gaslighting perspective and the quality of care that he receives when he does go to the doctor. I am reminded of the arguments made by white people that racism isn’t real because my life is hard too. His life is hard, but it would be so much harder if he was Black or brown.
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When crisis happens, racism in the public health and medical systems makes sure that the focus is on the collective as a single unit and on where things are already working/in place (aka white people in places with existing options) instead of looking for gaps (beyond the topical level related to the specific crisis). For both HIV/AIDS and COVID-19, if you have enough money you can buy the best treatments to improve your outcome because capitalism and racism drive healthcare instead of health being considered a basic human right. To personalize, similar to when changes were made only when Ryan White was diagnosed with HIV/AIDS, I’m thinking of the way I often only believe in the impacts of things when it happens to someone I know or identify with (other white people who live and work similar to me). It’s easy for white people, including me, to think that systemic racism in the medical system isn’t a big deal when you haven’t dealt with it or to victim blame (judge). Listening and believing BIPOC as well as looking at all the underlying factors instead of the surface of situations is an absolute must for reducing and stopping harm from the medical system to BIPOC. A big take away from this post are the ways to address access issues: ensuring medical facilities are located in all areas, improving public transport including cost and scheduling, and guaranteeing the right to quality healthcare for all which must include addressing racism that is perpetuated in medical training. I’m going to ask my family doctor what they are doing to address racism in the medical system and their practice and ask local politicians what they’re doing to ensure access and equality.
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I agree that we need to be proactive in our communities. I’m thinking that I need to reach out to our hospitals. One problem Is the lack of trust – deserved – that black and brown people have with mainstream healthcare. Thank you for bringing up ideas that I can follow up with too.
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Hi Julia, the lack of trust in the medical system is as you said, deserved, because of racism. I’m curious why you specified “mainstream healthcare”? I not familiar enough with the American medical system to be sure what that means, but I would think that racism in the medical field exists in all healthcare.
Also I wanted to mention that suggestions for action were included in the post and I re-stated them. Here is the excerpt from near the end of the post:
“What can we do? We can ask our own healthcare providers what they are doing, not just for us and for our immediate families, but for the community as a whole. Look at where your clinics and hospitals are located. Ask for mortality rates by demographic. Ask your local and state lawmakers what they are doing to make healthcare as a whole more accessible and equitable, and what they are doing in particular for COVID to insure equity and just treatment for all of their residents.”
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Hi Shara,
The reason I said mainstream healthcare was I was under the impression (and I could be very wrong) that some overworked neighborhood clinics provide better healthcare. Again, I could be wrong about this.
I must have missed the end of the post. Thank you for pointing it out to me.
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The healthcare system has changed, as white capitalist supremacy systems do, only as minimally as necessary to keep the system safe from revolution. Which inevitably means handling each circumstance as it occurs, and only when it starts to bother white people, rather than making any broader shifts that would help non-white people, and impact HIV-AIDS, cancer, lead poisoning in children, COVID, heart disease, and all the other things, all at once. So there are initiatives to make sure everyone has broadband access, and Wal-Mart is making sure everyone has access to one of their stores, but the USA still does not live up to the ideal of the Declaration, almost 250 years later, that government exists to secure the inalienable right of Life.
I drive farther away from the city, deeper into the suburbs, in order to access much of our healthcare at lovely new facilities built in towns that don’t really have a middle class, much less a working class. The assisting nurse drives in 50 miles from the Central Valley every day. What would I find if I turned my search toward the city instead? There is an 8-mile desert through south and east Oakland: no hospitals, no urgent care clinics. Only the Roots Community Health Center, serving the primary care needs of an area with hundreds of thousands of people.
One thing I know I can do is start paying attention to my local health district, which runs a nonprofit hospital in my town. There is a substantial Latinx working class in the service area, but to me, it looks like all the other high-income facilities. That almost certainly means it’s not meeting their needs.
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I am thinking about where you say the assisting nurse drives in 50 miles every day. I have family in the Bay Area and I used to live there as well, and I know well of the long distances people travel to their workplaces that are located in areas where many who work there cannot afford to live. Healthcare centers of all sorts have janitorial staff, entry level technicians, receptionists and many other important workers who have to be brought in to the well-off areas where healthcare centers decide to locate. Then they go back home and there are no services nearby when their own family members are in need.
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I like how you remind us that all systems are only “minimally as necessary”. So true. I’ve grown skeptical of grant funded programs at my work that are here for a minute, then gone. It’s traumatizing really, to be told there will be some help/services, only to have it taken away. Then there are the barriers to accessing this minimally necessary programming (sign these documents, agree to this and that, don’t do this/that). It doesn’t even make it worth it a lot of the time.
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I can relate to the iisue of transportation access as it relates to oppression around access to healthcare. I am familiar with the challenges of public transportation, having to rely on it myself. I live about 2 miles from the hospital where I work; however, it can sometimes take an hour or more for me to get to or from work, in between wait time and riding time. However, I do have the privilege of living in a city where there is much greater location access to healthcare, drug stores, grocery stores, etc., as well as transportation (although Charlotte is pretty large so I am not certain if the entire city has equitable access to these resources). I am also privileged in that, from time to time, I can afford to take an Uber to work if my transit falls through.
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I hadn’t thought about the employees who don’t live nearby and have family who need healthcare. My community is at most 45 minutes away from the hospitals but in the Bay Area I know that 45 minutes is a minimum one way. I’ve also noticed that the administrative part of healthcare has gotten a lot more cumbersome. I take care of my mom and fill out the forms for her but think about others that don’t have someone to help with the 27 pages of medical history that you have to fill out every time you go to the doctor’s office – the same one you were at 4 months ago. We need a drastic overall of the health system in this country.
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Here and in previous discussions we’ve been talking about access to medical care. On a previous post I looked at CVS locations in my city and state because white people were talking about vaccines are available at CVS in a way that made them seem accessible. It turned out that most of the state does not have reasonable access to a CVS. Today I looked beyond CVS to see access to medical care in my city. Looking at hospitals, it seemed like people of different incomes were all pretty far from hospitals though of course some people do live around hospitals. They weren’t located in the upscale areas. Switching to medical clinics, however and then medical centers and adding Walgreens and even trying out doctors, it is clear that the majority of these types of facilities are all spread out in the same quadrant of the city with the same people having access to them as to the CVSs and with other parts of the city needing to travel to get to medical care.
I am thinking about the programs where doctors get their med school tuition paid off if they spend a certain amount of time working in an under-served area. I am thinking that doctors graduating from school are still mostly white people. They get their debt forgiven if they work in Black or brown communities and then can move their business out of those communities and make a ton of money without debt working and living in white communities while also feeling like good saviors for their time working in the Black and brown communities (which they were actually benefiting from because it contributed to their generational wealth). If our country was to make degree programs and med school free, then the white doctors wouldn’t have an incentive to go work in Black and brown communities because they wouldn’t have debt to be forgiven. BUT medical degrees would be more in reach for Black and brown people who may be more likely to set up their practices in Black and brown communities and stay there. Free college education could help to make access to medical care more equitable.
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Those programs that ‘pay tuition off’ mean the staff are only present as long as they have to be to get their student loans paid off, then they’re often so burnt out by high case loads, low pay (high school janitor at the local school district gets paid more than those entry level master degree positions), and unbearable bureaucracy and paperwork demands they leave. Average at my work is a staff will stick around about 1.5 years, maybe two, then they’re off. This leaves the true victims, those receiving care, experiencing constant churn in their treaters. Just when you’re starting to finally trust one person (because availability is only 1-2X monthly to be seen), then you have to start all over again wondering if the the next person will treat you justly, what their biases are, how long they’ll be around. How is a person supposed to heal under those conditions? At that point it often just becomes re-traumatizing or the person gives up and decides that suffering is less painful than trying to seek out the help to address it.
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I have experienced that churn of primary care providers. I get established with a provider and then the next time I need to make an appointment, that person is no longer at that practice though I think the churn is related to tuition being paid off. I am trying to think when the last time I saw the same primary care physician (not a specialist) twice. It might have been almost 20 years ago. However, as you point out, for Black and brown people, who have personal and generational experience of medical providers not being trustworthy, trusting a brand new provider is a whole other ballgame than it is for me. Additionally many Black and brown people have far more reasons to see a doctor than I do as I and the generations before me have been able to access fresh and healthy food, live in areas with low pollution, buy health related products and services, live with lower stress levels, have better medical care even when it’s not always with the same provider, and so on. The churn that I experience does not negatively affect me as much as medical provider churn affects Black and brown people.
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The sad state of our healthcare system is something I’ve really learned from Lace and this past year. COVID and all the “never befores” that have happened have shown a light on a lot of inequities and failures in our communities. I work with a non-profit that has a healthcare mission and we are focusing on the inequities in care for black and brown moms. As someone mentioned above I need to ask questions in my community and work to help with solutions. Starting now.
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Today I listened to a video created by the Director of the Spiritual Care Department at the hospital where I work, in which he discussed the spiritual principles of our healthcare system. He made a comment that all hospitals in our health system offer equal access to health care regardless of one’s ability to pay. Thus, patients do not get turned away from our Emergency Department because of an inability to pay. However, he called this “charitable care” and generosity. Not one mention of systemic racism, no acknowledgment of racial disparities in healthcare. Without systemic racism, the racial disparities in healthcare would not exist. Systemic racism creates socioeconomic barriers to health care for Black and brown people, it is why some people do not seek medical treatment when it is needed, and/or come to the hospital unable to pay. It is true that not all patients who are unable to pay are Black and brown, but most of the time BIPOC are disproportionately dealing with socioeconomic barriers that make it difficult or impossible to afford health care. So while it is a start that our hospitals offer access to healthcare regardless of socioeconomic status, the fact that systemic racism was not even acknowledged is deeply problematic. Besides, what happens for patients who cannot afford to pay for medical care, who need to be transitioned into a rehab or nursing facility? They once again end up in the same situation. Without acknowledging systemic racism, anything else the healthcare system does to expand healthcare access, is only putting a Band-Aid on the problem.
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@kels Hi Kelsi, I’m identifying with the “touching” on the fix or thing I believe makes me good without naming and fully addressing the actual issue. As you said, not addressing the actual issue only bandaids the situation, and I think when I do this, the bandaid is more for me than for anyone affected so it’s more like a cookie or sticker.
You mentioned that people aren’t turned away from the emergency department even if they can’t pay but does that mean they won’t be admitted or be able to have certain treatments that aren’t considered “emergencies”?
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I want to be transparent that this discussion hits at my ‘giving up’ nerve. My primary care physician is a black woman and I have followed her to different locations because she is an excellent physician. I have put little thought into how hard it is for people to get to her in the suburbs. Everything I think about this subject, it hurts my head. I have the story that the US Healthcare system is the caste system at its best. It is easier for me to figure out ways to work on voting right and be relational. Health care? I can speak up, but the rest feels like complaining with nothing to do about it.
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