December 20, 2024
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The field of rheumatology has “left behind” patients with lupus from Africa — and across the global African diaspora — at nearly all academic and clinical levels, from research to diagnosis to treatment, according to researchers.
In a review article recently published in Frontiers in Genetics,Ashira D. Blazer, MD, MSCI, assistant professor of medicine in the division of rheumatology at the University of Maryland School of Medicine, and colleagues aimed to understand the disproportionate impact of systemic lupus erythematosus among various underrepresented groups.
However, their focus was on SLE incidence, prevalence and adverse outcomes among individuals across the African diaspora around the world.
According to the researchers, although genetics and epigenetics do play a role in outcomes, other factors, such as delayed diagnosis and a lack of access to physicians, therapeutics and information, represent significant obstacles for this often vulnerable population.
Healio sat down with Blazer to discuss ways to approach such a broad and potentially overwhelming topic, the hurdles faced by patients of African ancestry in various parts of the globe, and solutions for 2025 and beyond.
Healio: How did you go about undertaking such a huge topic? What were the methods you used to study lupus in the African diaspora?
Blazer: During my fellowship, I heard all too often that SLE was less prevalent in Africa. The theory that the high prevalence of infectious diseases such as HIV, malaria and other parasitic infections somehow modulated the immune system and decreased autoimmunity seemed unsubstantiated and speculative.
I had the wonderful opportunity to start working with collaborators at the University of Ghana and the Lagos State University Teaching Hospital. I also started to attend regional meetings for the West African Society of Rheumatology, the African League of Associations in Rheumatology (AFLAR) and the Caribbean Association of Rheumatology. Through these interactions, I made quite a few connections with rheumatologists across the diaspora and started to understand the challenges in treating and research by region.
Getting input from the rheumatologists taking care of patients on the ground helped me direct the literature review and formulate the call to action.
Healio: You mention that there are limits to the understanding of genetic reasons for increased incidence of lupus in individuals of African ancestry. What is currently known, and what are the unknowns?
Blazer: Many of the challenges are related to the lack of diversity among the participants of prior genetic studies. African ancestry genomes are the oldest and most complex genomes, since human populations originated on the continent. This means that family trees in Africa are older and have been subject to less genetic drift.
Most genetic studies depend on sequencing small portions of the genome and then making educated guesses —imputations — about the un-sequenced portions of the genome. These guesses are based on which genetic information is usually inherited together. Those inheritance blocks may be different across different human populations, and the amount of genetic information that travels together may be smaller in older human populations — like those seen on the African continent. These factors influence the accuracy of genetic studies particularly in African ancestry populations.
The other interesting factor is that genetic variants may behave differently based on the local environment. We always assume that genes encode pretty stable traits, such as the curly hair gene or eye color gene, etc. It turns out that genes may behave differently based on environmental factors.
For example, I study Apolipoprotein L1 genetic variants that increase the risk for kidney disease. I am finding that the pathologic gene variants are much more likely to cause kidney injury when the person carrying those genes has an inflammatory or infectious chronic illness. Since genetic variants are rarely studied in the environments where African-ancestry patients live, we do not have as clear of an understanding about how these variants behave in health and disease.
Healio: You mention that the African diaspora faces several barriers to care. Can you speak to each, starting with barriers to diagnostic tools?
Blazer: In the West, we have become preoccupied with diagnostic specificity. Instead of relying on patient symptoms or subjective clinical assessments, we are moving toward diagnostic tools we consider more objective. These include immunology-based blood tests, imaging studies like CT scans or MRIs, or functional studies like pulmonary function tests.
In the developing world, or in lower resourced health environments, these tests are often unavailable or cost prohibitive for the patients seeking care. As gold standards move toward more expensive diagnostic tools, patients in the African diaspora are being left behind.
Healio: How about barriers to therapeutics?
Blazer: Many of my collaborators in the diaspora have made concerted efforts to have conventional therapeutics, like hydroxychloroquine, mycophenolate, and prednisone, covered by their ministries of health. As lupus care shifts toward biologic therapies, access to these more advanced therapeutics remains limited across the diaspora.
These drugs tend to be much more expensive and are often unavailable both due to a lack of investment by ministries of health and a lack of regional marketing by the pharmaceutical companies. Many new SLE drugs are not trialed or sold in African or Caribbean countries. This nearly eliminates local access to advanced therapies for patients in the diaspora.
Healio: Could you also talk about barriers to accessing health care providers?
Blazer: We face stark physician shortages in the United States, particularly in rural and urban areas where African Americans tend to live. However, these shortages pale in comparison to those seen on the African continent.
For example, in Ghana, there are 0.164 physicians per 1,000 people, and only a few trained rheumatologists. Finding specialists to treat patients with SLE can be almost impossible, especially in rural areas or more remote regions of these countries.
That said, regional rheumatologists are taking solutions-oriented approaches. For example, in St. Lucia, rheumatologist Amanda King, MBBS, MRCP, FRCP, FACR, SLMM, has trained local primary care physicians to identify SLE, and refer early. This has directly improved life expectancy for patients on the island.
Healio: How about barriers to research and clinical trial participation?
Blazer: The research infrastructure is quite limited in developing countries throughout the African diaspora. There are few sources of local funding, and few institutions capable of conducting high-quality research or clinical trials. Moreover, many pharmaceutical companies lack initiatives across the diaspora, which limits the availability of local clinical trials.
Healio:Now, let’s talk solutions. Where do you start when the challenges are so comprehensive? Could you offer a couple of starting points?
Blazer: Addressing comprehensive challenges starts with improving socioeconomic conditions and health care infrastructure. In the African diaspora, limited resources and a shortage of physicians require solutions that focus on developing ‘physician extenders,’ like primary care providers, nurses and other health care workers, to enhance access to care.
Additionally, patients who lack health care access also cannot participate in research. This limits our understanding of genetics in global populations and our ability to make treatment advancements. Increasing awareness about lupus and autoimmune diseases is key, not only for patients to recognize symptoms and seek care, but also for other specialists, like dermatologists and nephrologists, to refer patients to rheumatologists.
One example of this is the work done by my collaborator and co-author on the manuscript, Ida Dzifa Dey, MSc, MbCHB, who leads the Lupus Research Initiative in Ghana. This initiative raises awareness, secures funds and lobbies governments to ensure more resources are available for lupus patients, making strides in both patient support and research participation.
Healio: Let’s talk about geography. Are the obstacles faced by Americans of African ancestry different from those faced by Europeans of African ancestry, etc.?Could you discuss some of the broad challenges in the diaspora?
Blazer: The challenges faced by individuals of African ancestry, whether in the United States or abroad, often stem from the lack of health resources.
In Africa, this is largely a legacy of colonialism, which has left many countries with underdeveloped health care systems. In the United States, the legacy of chattel slavery has resulted in systemic barriers that persist today, leading to disparities in health care access for African American patients. Although the context differs geographically, the root causes are two sides of the same coin — a history of systemic marginalization.
Healio: What are some of the challenges particular to U.S. populations?
Blazer: In the United States, African American patients often encounter barriers like limited access to rheumatologists, un- or under-insured status, and socioeconomic disadvantage that impedes the ability to seek and maintain high-quality longitudinal care.
This gap means they may not be aware of all their treatment options, leading to a greater reliance on steroids, which can cause long-term damage and comorbidities. They are also less likely to be informed about newer biologics or advanced therapies, which could reduce disease activity and improve overall health.
Healio:When you think about timelines for improvement in these issues, do you have any particular goals for 2025? How about for 5 years, 10 yearsand beyond?
Blazer: Writing this paper allowed me to collaborate with rheumatologists across the African diaspora, and it was inspiring to see how similar challenges are being addressed through community-based, grassroots efforts.
One of the most immediate goals for 2025 is to establish a formal collaboration with rheumatologists in the United States, Canada, the Caribbean and Sub-Saharan Africa. This collaboration will aim to enhance our understanding of the unique problems faced by patients of African ancestry, sharing strategies that have proven effective in various contexts.
In 5 years, we envision both research initiatives and patient-centered health programs that not only improve access to care, but also strengthen research infrastructure in underserved areas. For example, I’ve previously collaborated with AFLAR to train new researchers in developing their projects. We can expand these efforts, broadening the training programs and extending them globally.
Additionally, leveraging resources and expertise from rheumatologists in developed countries could further accelerate progress in both research and patient care across the African diaspora.
In 10 years, I envision building sustainable partnerships across the African diaspora that not only facilitate research studies, but also allow for real-time feedback from the patients most affected. Ultimately, this effort aims to foster collaboration across regions, bringing together experts and communities to create meaningful, lasting change.
Healio: Our readers are primarily practicing rheumatologists. What messagesshould they take away from this paper regarding this important topic?
Blazer: For too long, the scientific community has assumed that differences in outcomes across the African diaspora are primarily due to genetic or biological differences. This simply is not true.
We must recognize that there are no biologically defined racial subsets, and therefore, we need to consider the broader social determinants that impact health outcomes. Factors like poverty, neighborhood segregation, poor health infrastructure, and limited access to physicians significantly affect lupus outcomes for patients in this group.
I believe this paper represents a step forward in shifting our thinking to acknowledge these complex interactions. I hope it sparks more discussions on how the interplay between genetics and environment shapes health outcomes, driving more holistic and equitable research approaches.
References:
Hwang J, et al. Frontiers in Genetics. 2024;doi:10.3389/fgene.2024.1414490.
Published by: Sources/Disclosures
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Disclosures: Blazer reports associations with AstraZeneca, GlaxoSmithKline and participation in a Reddit live chat about the use of anifrolumab (Saphnelo, AstraZeneca) in patients with lupus.
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