The Expert Series: Health Disparities and Social Determinants of Health
Whether you’re a person with lupus or a caregiver, there are many things and outside forces that can affect management and care. Maybe you’ve heard of the terms health disparities or social determinants of health and weren’t quite sure what that meant.
LFA’s Research Director Dr. Joy Buie explains these terms and what it can mean for people with lupus and their caregivers.
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Welcome to The Expert Series brought to you by the Lupus Foundation of America. Our health education team is here to bring you experts in lupus to discuss topics to help you live better. Thank you for tuning in today's episode. My name is Alyssa and I'll be your host.
I am very excited to welcome Dr. Joy Buie, who will help us understand health disparities and social determinants of health. Dr. Buie is the director of research at the Lupus Foundation of America. She oversees several initiatives, including the health disparity study focused on examining causes of racial health disparities in lupus, and identifying solutions aimed at eliminating disparities in communities with the greatest burden of disease.
We are delighted to have you join us today, Dr. Buie.
Dr. Buie 0:56
Thank you, Alyssa. I'm very happy to be here.
All right, awesome. Kind of starting off with the basics. What are health disparities? And what are some factors that contribute to health disparities for lupus patients?
Dr. Buie 1:15
Sure, so the National Institutes of Minority Health and Health Disparities, or NIMHD has a definition of health disparities that points out adverse health differences and populations with a social disadvantage, because a defined difference in health outcomes between populations is simply not necessarily a disparity. Therefore, a disparity, at least through the lens of NIMHD, is a measurable difference between a socially disadvantaged population, and a more advantaged reference group or the general population. The NIMHD definition really emphasizes the importance of the historical or current link to discrimination, or exclusion in determining health and healthcare disparities.
Now, on the other hand, Health People 2020 defines a health disparity as a particular type of health difference that is closely linked with social, economic, and/or environmental disadvantages. And this definition really accounts for contributions of social determinants of health, to an individual's ability to achieve good health, in addition to their sex, age, and disability.
Now, Lupus is a disease with a distinct difference in SLE prevalence in favor of female patients nine to one, and this is really due to a sex hormone difference that influences the loss of immune tolerance and subsequent autoimmune reactivity. Now, in addition to that, it's well documented that people of Asian and African ancestry are at increased risk for developing SLE across the world. And this is also true for persons of Latino background in the US. So this suggests that perhaps are both genetic and non-genetic factors that lead to the pathogenesis of lupus.
And some scientists even believe that the non-genetic factors may be a key driver in people of African descent living in the US, given that cases are not well documented in their West African relatives. Still, rheumatologists and diagnostic tools used to detect lupus in West African countries are not as readily available. So more research is really needed to draw collusion about environmental linkages, because if the disease ultimately can't be detected, then we really don't know the true prevalence on the continent of Africa. So stay tuned with that one.
But in addition, African, Latino and Asian patients are at increased risk for developing lupus at an earlier age and are also at increased risk for multiple organ system damage, including kidney involvement. Moreover, rates of end stage kidney disease are generally higher in people of African and Latino descent. So all of these factors really contribute to health disparities. And lupus patients vary but distinct difference in terms of prevalence and risk for developing the disease, but also more progression to end stage renal disease and ultimately, mortality.
Thank you for that explainer. And I'm going to ask a follow up, you know, what are social determinants of health? And how does this affect lupus communities of color?
Dr. Buie 4:46
So, sure, so social determinants of health are social, economic, and environmental determinants that really impact someone's health. And so when we think about social determinants of health, we think about things such as education, we think about socio-economic status. We think about one's social and physical environment, where they live, work, eat and play. And so all those different factors are very important for one's ability to achieve optimal and adequate health outcomes.
Now, there are various different types of determinants, not only social. We also know that there are structural determinants of health that actually interact with social determinants of health, in the space of socio-economic status. So, structural determinants are things like societal norms and policies and laws that what's precluded certain groups from voting or occupied spaces and places designed for their upward mobility, and wealth accumulation actually had huge impact on their ability to have a higher socio-economic status. And it's in that social economics, that is that, you know, we really understand social determinants of health, because socio-economic status really has a huge impact on one social determinants of health, where a person can live, what type of health care access they have - all of those different facets that are very, very, very important for managing a disease like lupus.
And so things like occupational health hazards, poor quality housing and impoverished neighborhood, exposure to discrimination or racism, and poor quality medical care are really the result of, you know, having a lower socio-economic status, that then leads to these not so favorable social determinants of health.
And communities of color have the lowest amount of wealth in the United States. So we know that they have the lower socio-economic status, and this precludes them from really accessing the best medical care possible, they don't necessarily have access to rheumatologists who are also considered lupologists that specialize in lupus care, simply because they occupy spaces in places that are not in close proximity to high-quality care. And this is a problem, and the literature has shown over and over again that poverty and living in impoverished environments tends to lead to poor health outcomes. There's also literature from Ed Yelland group, as well as other groups outside of the lupus research world, that have shown that when you take a person out of poverty, and you put them in a different economic space, social economic space, a different social space, and you integrate them with other communities who have more social disadvantage, health disparities decline. And so we know that social determinants of health are extremely important when it comes to assessing why a health disparity exists.
Great, kind of going off of that, you know, how does income play a role in social determinants of health? I guess, as an example, high income versus low income.
Dr. Buie 8:25
Sure, so we know that, you know, for lupus patients, low income means that they have access to unsafe housing options, as well as neighborhoods that are typically associated with food deserts, because there aren't grocery stores that provide fresh, healthy options that are affordable. And so most of the time a person has to leave their neighborhood in order to get that food.
Typically, a person who lives in these neighborhoods don't have adequate transportation to go to the grocery store. And in a different neighborhood that that has that food. And even if they did, a lot of times, those food options aren't going to be affordable. And so having low income or no income really plays a huge role. And one's ability to be able to manage their health; self-manage their health. In addition to that, we know that living in a low-income neighborhood precludes them from accessing those rheumatologists as I alluded to before. And so oftentimes these persons are showing up in the emergency room in critical condition even because they've not been able to manage their disease properly. And oftentimes, they rely on over-the-counter medications or home remedies that ultimately aren't sufficient enough to control and manage a disease like lupus.
But more importantly, you know, low income prevents them from from being able to, you know, access those life-saving medications that can prevent flares. And oftentimes, they might miss appointments due to having to, you know, take care of children or provide elder care to a family member, or even not having transportation to go to some of those academic and medical centers, or rheumatologist who are just not in close proximity to them. So low income really precludes people from achieving optimal health outcomes while living with lupus.
And so we see a very, completely different story for people who have higher income levels. Because we know that over time, the overall mortality rate for lupus has declined. And so there are great medications that have come to market that are available to treat lupus, and they treat lupus very effectively. But not all patients can access those medications. And so we know that people who cannot access those medications and have to rely on other sources to manage their disease typically don't fare well.
The last question we have here is, you know, what can lupus-serving organizations do to address social determinants of health or health disparities?
Dr. Buie 11:24
Absolutely. So we know that lupus is, you know, a really complex disease, and causes of health disparities are multifactorial. I think the first thing lupus patient organizations really need to do is a community needs assessment. Until we really understand the problems, until we really begin to talk to people and understand their needs, it's very hard to address the issues. So I think there has to be a community-based participatory research approach in order to really understand the real needs of communities that are impacted by lupus health disparities. In addition to that, you know, it requires taking that information and putting it to work. So we have to use that information to affect change at the policy level, at the community level, at the individual level. And, and within the context of health care. All of those different pieces are extremely important if we're going to address issues around health disparities in lupus.
Thank you so much, Dr. Buie for your time today, and for talking with us about health disparities and social determinants of health.
We invite those of you listening in to check out our past episodes of The Expert Series by visiting lupus.org/theexpertseries, where you can also subscribe to get alerts when podcasts are released. If you have any lupus-related questions, please reach out to our health education specialists at lupus.org/healtheducator or by phone at 1-800-558-0121. And we'd also love to hear from you. If there's a topic you'd like to see covered, email us at email@example.com and add "Suggested topic: The Expert Series" in the subject line. Thank you. Until next time,
- Episode 1: Managing and Preventing Flares
- Episode 2: Financing Your Medical Care
- Episode 3: Tips for Managing Medication Side Effects
- Episode 4: Diet and Lupus: Separating Fact and Fiction
- Episode 5: Lupus and Brain Fog
- Episode 6: Lupus and Men
- Episode 7: Complementary and Alternative Medicine
- Episode 8: Clinical Trials and Lupus
- Episode 9: Lupus 101
- Episode 10: Exercise and Lupus
- Episode 11: Lupus Lab Work and Blood Tests
- Episode 1: Skin Lupus - Beyond the Butterfly Rash
- Episode 2: Becoming a Self-Advocate
- Episode 3: Lupus and Heart Health
- Episode 4: Lupus and the Kidneys
- Episode 5: Preparing for a Doctor's Appointment
- Episode 6: Childhood Lupus and Mental Health
- Episode 7: Vaccine Safety and Lupus
- Episode 8: 5 Common Questions About Diagnosing Lupus
- Episode 9: Planning for Pregnancy with Lupus
- Episode 10: Lupus and Eye Health
- Episode 1: Lupus Foundation of America Health Educators and Resources
- Episode 2: Fatty Acids and Lupus
- Episode 3: Mental Health and Wellness During a Time of Uncertainty
- Episode 4: Telehealth and Lupus
- Episode 5: Reproductive Health and Lupus
- Episode 6: The Impact of Racial Trauma on Mental Health
- Episode 7: Kidney Health and Lupus
- Episode 8: The Importance of Support
- Episode 9: Trust and Participation in Research
- Episode 10: Advice from the Community
- Episode 1: Lupus and Physical Activity
- Episode 2: Top Questions about Skin and Hair
- Episode 3: Managing Your Journey with Lupus Nephritis
- Episode 4: Improving Health Visits for People with Lupus
- Episode 5: Could It Be Lupus?
- Episode 6: Men’s Health and Special Considerations with Lupus
- Episode 7: Making it Work with Lupus
- Episode 8: 2021 Lupus Treatment Research Updates
- Episode 9: Lupus Myths and Realities (podcast in Spanish)
- Episode 10: Diet, Nutrition, and Kidney Health
- Episode 11: Caring for Caregivers
- Episode 12: Winter Wellness
- Episode 1: Medication Management
- Episode 2: The heart and lupus
- Episode 3: Recursos Financieros Para Personas Hispanas/Latinas con Lupus (Financial Resources for Hispanics/Latinos with lupus)
- Episode 4: Lupus and Antiphospholipid Syndrome (APS)
- Episode 5: Self-care & self-management for people with lupus
- Episode 6: Fertility and reproductive health
- Episode 7: Participating in Clinical Trials
- Episode 8: Lupus and the Eyes
- Episode 9: Respuestas de nuestra educadora de la salud
- Episode 10: Health Disparities and Social Determinants of Health
- Episode 11: Lupus and bone health
- Episode 12: Step therapy and access to medications
- Episode 13: Remission: Can my lupus go away?