Health disparities and the incidence of kidney diseases are undoubtedly connected. We need to address disparities and achieve equity not just in kidney care, but in health care overall.
By: Mukta Baweja , MD, Assistant Professor, Medicine, Nephrology, Icahn School of Medicine at Mount Sinai
You might think that in New York City there would ordinarily be a diversity within patient demographics. Although it is true that my geographical area is quite diverse, covering areas from the Upper East Side of Manhattan to Harlem to the Bronx, for the most part, the patients I most often see have quite a bit in common. Not only do they often develop the most serious consequences of chronic kidney disease, including those that lead to dialysis, but they are also typically from non-White backgrounds and have compromised social determinants of health.
Black Americans are more likely to develop kidney disease than White Americans and three and a half times more likely to progress to kidney failure than White Americans. Americans of Latin and Hispanic backgrounds are one and a half times more likely to progress to kidney failure than White Americans. This is not because of a genetic basis—after all, humans share 99.9% of genetic makeup and the 0.1% that varies occurs within racial classification (not between races). But those increased rates of development and progression of disease could be explained by other social determinants. As an example of one such disparity, Black Americans and other minority groups are less likely to be insured, and, as a result of the COVID-19 pandemic, their risk of losing coverage is greater than before.
Social determinants of health are often talked about as though they are experienced by only some groups, but they are experienced by everyone. Factors that confer a hindrance to some groups, are in turn a benefit to others. When we see patients who are marginalized, we are undoubtedly seeing the consequences of racism in health and the disparities that can be seen at each level upstream from when we see patients in the office—which, more often than not, is when it is too late for just preventative care.
Social determinants explain why the issue has to do with more than just access to health care. The issue that social determinants of health captures is an intertwined mesh of factors and policies that each have built-in disparities, contributing to an imbalance and disparity in kidney diseases as well. Even after coming onto dialysis, where the cost of dialysis can be covered by Medicare or even emergency Medicaid, there is still a significant cost barrier. Even with insurance, the cost of medications is not affordable, particularly if a patient is from lower socioeconomic status.
Not very far into my career, one of my first patients provided a very clear and striking example of the choices our patients are forced to make. She was undocumented and had been doing well on dialysis for several years after starting treatment as an emergency due to lack of access to care. Her monthly labs, particularly phosphorus, were unusually abnormal, and could be explained by not taking medications as prescribed. I asked her, “Is everything ok this month? You usually never forget to take your medications.” And she said, “You know, those pills cost me $100 a month, but I know you say I should take them. It’s just this month, I had to make a choice to feed my kids or take this medication.”
That life-saving medication was calcium acetate, or what I like to refer to as, glorified Tums. It should cost pennies, and should not cost a mother to make a choice of feeding her kids before herself. This is just a simple example, but there are layers and layers of disparities in the social determinants of her health.
It is also not hard to see how dialysis in and of itself can be disproportionately burdensome, especially to those from a lower socioeconomic status. First, there is the time and financial costs of going to and from the dialysis center. Then, the waiting room period may be up to an hour or more, while in close proximity with other people, compounded by COVID risk. Then you might have to wait for up to one hour after the procedure, which takes between 3 to 4 hours. Add it all up, and you’re committing to an entire day. How can someone, who like some of my patients, have a minimum wage job with no medical leave, and in some cases no insurance (aside from dialysis coverage), make that happen? It would be understandable if patients who already may have had upstream disparities are now facing life-sustaining treatment that further their job and income, as well as their personal and career goals.
Home dialysis, which can address some of these difficulties, is not just better than in-center dialysis in terms of quality of life but also in terms of hospitalizations and mortality. Yet, at best, this option is only pursued 10% of the time. Why don’t most New Yorkers choose home dialysis? It is often because of social reasons. There needs to be sufficient space in the home, and New York City isn’t exactly known for its spacious real estate. Also, there needs to be somebody who is trained to do dialysis and available during dialysis for the patients. These issues are barriers, but they are barriers that could have policy solutions, like housing policy adjustments and even policy for coverage for dialysis assistance in the home.
These realities are not new. Examples of these situations are probably recognized by most providers. There is not enough room in this small space to discuss all the inequities our patients have faced, are facing, and will continue to face. But what we know is that there is a snowballing effect at work in the overlap of social determinants of health that have the heaviest impact on the most vulnerable populations, a compounding circle of strained financial circumstances, poverty of information, space, staff help, and resources—downstream constraints that only begin to scratch the surface.
Health disparities and the incidence of kidney diseases are undoubtedly connected. But is there hope that we can address disparities and achieve equity not just in kidney care, but in health care overall? Yes! There are many places to start to make change. One avenue that I support fully is ASN’s “ We’re United for Kidney Health ” campaign, which invites health care professionals to join the movement to shift our focus from kidney failure to kidney health.
If we don’t face these problems, they won’t change. We have to take advantage of all tools at our disposal to make progress in the years ahead. One such tool is this campaign and addressing each issue with comprehensive strategies that ensure health equity in every step of the way.
With most conditions, we typically treat the underlying cause of the disease. It is hard to see that racism and disparate policies are not the cause here. As members of societies and as health care providers, it is paramount that we push ahead to tackle disparities in our medical decision-making and policy creation.