UHC Blog Series
Systemic Lupus Erythematosus in UHC
By Grace Bagdon
December 11, 2020
October 13, 2020
When developing healthcare systems equipped for the future, it is essential that we consider the persistent and emerging health trends that are present in the global population. Autoimmune disease incidence rates, while still uncommon, have been on the rise for the past several decades and show no signs of stopping. Autoimmune diseases are a group of over 80 diseases where the body attacks itself and while the scientific knowledge surrounding these diseases has been expanding relatively rapidly, their existence, origins, and development are still not well understood. Since generally autoimmune diseases are incurable and are managed through the use of different therapies and lifestyle changes, it is crucial we include autoimmune disease management in the development of healthcare systems, especially in places like Africa where autoimmune diseases are not as frequently diagnosed, discussed, or adequately treated.
One autoimmune disease that lacks the attention it needs in the global health sphere is Systemic Lupus Erythematosus (SLE), which is a type of Lupus. Lupus impacts an estimated 5 million people worldwide, though that number is likely higher due to underdiagnosis. SLE can impact any system in the body, though the kidneys, skin, joints, and heart are amongst the most common. Symptoms of SLE are often debilitating and include brain fog, chronic pain, kidney issues, rashes, and headaches. In addition to being incurable, women, who are often diagnosed between 15 and 45, make up an estimated 90% of diagnosed SLE cases.
The presence of SLE in Africa for decades was thought to be negligible, however recent incidence rate studies are proving this theory wrong. In fact, women of African descent are 3 times more likely to develop SLE than white women. Often SLE appears earlier and more severely in African women as well. In African Americans, about 1 in every 250 women will develop SLE. When compared to SLE patients in the global North who often enjoy full or nearly full life expectancies, African patients are more likely to die prematurely from SLE for reasons like late diagnosis, poor or late intervention, and comorbidities.
When considering how long it takes to receive a diagnosis for SLE in sub-Saharan Africa, it is important to evaluate the availability of accessible care. It is recommended that there be at least one rheumatologist, the specialist one would see for autoimmune disease treatment, for every 150,000 people. Sub-Saharan Africa houses an estimated 120 rheumatologists for one billion people. In addition to a chronic shortage of rheumatologists, accessing diagnostic tools like lab work, medical imaging, and biopsies can be very difficult and expensive. These tests often need to be sent to South Africa or Europe for processing, which makes them even more unaffordable.
Late intervention can be looked at both from the perspective of the patient and the health system. Many of the symptoms of SLE are similar to that of HIV/AIDS, which can lead those experiencing effects to bypass treatment. Additionally, due to a lack of education surrounding SLE, many potential patients do not know what SLE is, if they are at risk, or what symptoms to look out for. For providers, many doctors need to receive more education about identifying and treating Lupus and other autoimmune diseases, especially if the populations they are serving often could be considered at-risk. It is essential that curriculum including SLE and other autoimmune diseases be incorporated in medical school, especially as the incidence rates of these diseases continue to rise.
The development of SLE is not entirely understood, but it is thought that genetics, hormones, and the environment each play a role. The environment includes variables like ultraviolet light exposure, emotional stress, toxins, physical stress like childbirth, infections, and certain drugs like antibiotics. Infections such as Epstein-Barr, cytomegalovirus, and herpes zoster virus are all linked to the development of SLE. Toxins like mercury, silica, and cigarette smoke are also connected to SLE development. Finally, comorbidities like HIV/AIDS, other autoimmune conditions, or heart disease can make SLE even more complex and vice versa. Once SLE is developed, the SLE and the drugs used to treat it compromise the immune system, leaving a patient vulnerable to certain cancers, pneumonia, and urinary tract infections.
Lupus did receive more press than usual in the early months of the pandemic because the drugs hydroxychloroquine and chloroquine were thought to be a cure for the COVID-19. As a result of this, people began buying out the stock of the medication, countries began mass-producing the drug and stopped exporting it, and because of this, many SLE patients globally were left without this disease suppressing medication, especially in places like Africa that rely mostly on imported pharmaceuticals. Now months later, hydroxy/chloroquine has not been scientifically supported for the treatment of COVID-19. In the scramble to possess this drug, there were stockpiles compiled in many countries like the USA. So much hydroxy/chloroquine was accumulated that when the drug was ruled ineffective, the US donated millions of doses to Brazil, who at the time were still using the drug. Today, these
hydroxychloroquine doses sit in warehouses unused and one former health minister says the pills may be eventually destroyed. All while masses of autoimmune patients dangerously went, and some still are going, without their medication due to the global hoarding.
On World UHC Day, it is essential that when designing plans for health systems that we think holistically, and diseases like SLE show us why this is necessary. A strong health system starts from the bottom- the education of health workers. When doctors or caregivers are unaware of what to look for in a disease, patients are at risk of receiving late or delayed care, which can be fatal. When SLE is suspected, many people are unable to see a rheumatologist or afford the lab tests that often must be sent away to be processed, making them largely inaccessible to your low-income citizen. This is a problem because like many conditions, there is a direct link between SLE mortality and poverty. Impoverished SLE patients face death and more severe SLE damage at much steeper rates. Every patient is deserving of equitable access to care, which includes disease diagnosis and management, no matter the socioeconomic status involved. For conditions that require medication, it is important that health systems have the ability and capacity to ensure access to the life-saving medication that people need, regardless of the context of the global health sphere or if they import their pharmaceuticals.
Furthermore, SLE shows the importance of multisectoral collaboration in universal health coverage. To achieve this, different health and non-health sectors must come together and work towards a universal, comprehensive health system. For example, the environment can have a role in the development of SLE, meaning that in order to build a truly inclusive system equipped to handle SLE, other industries that impact the environment need to be included as well. For example, the agricultural industry plays a role in developing strong health care since certain pesticides and long term ultraviolet light exposure can influence the development of SLE and other conditions. By working to reduce UV exposure and eradicate these pesticides, SLE onset may be delayed, disease activity may be lowered, and overall healthier people will result. Finally, in order to have the most complete UHC system as possible, we must drift away from strict disease silos and into a unified coalition fighting for health care for all. Many diseases have symptoms and treatments in common and often could benefit from working together. There are many more underrepresented diseases like SLE that get left behind in the current health system format. As we fight to develop universal health care structures, we must keep these diseases in mind and ensure that the system is welcoming to these lesser-known diseases and has the capacity to holistically treat them.