Living with lupus often means carrying an invisible weight.
This May, Andrea’s Gift Foundation (AGF), a lupus-focused NPO, is facing lupus head-on. Encompassing their values, awareness, education and support, facing lupus head-on seeks to address the realities of living with lupus.
Although healthcare professionals equip patients with ways to manage their lupus symptoms, living with lupus also means learning to navigate medical aids, make sustainable lifestyle changes, manage flares, and form strong support structures.
At the same time, it means showing up for those who rely on us as parents, children, siblings, loved ones, or even employees.
Lupus, short for systemic lupus erythematosus, is an autoimmune disease[1]. Our immune systems typically make antibodies which protect us against harmful pathogens like viruses and bacteria. When you have lupus, the antibodies attack the body itself instead of these pathogens.
This leads to inflammation and damage in the tissue of the body, such as those in the joints, skin, kidneys, heart, lungs, or the brain. It is estimated that 9 out of 10 lupus patients are women, and that overall, women make up more than 80% of the population with autoimmune diseases.
Often referred to as the “cruel mystery” or “great imitator,” lupus has a reputation for being mysterious. Speaking to the lupus diagnosis of American performer Selena Gomez, the BBC published an awareness article in 2015. Six years later, in 2021, the BBC released a video Lupus: The disease with a thousand faces which detailed its impact upon the lives of women. In a recent BBC Africa Daily podcast, host Alan Kasujja asks an important question: Why don’t we know more about lupus and autoimmune diseases?
This is a common pattern we see. Every few years, the same questions around the mysterious nature of lupus appear. However, lupus is not a new disease, and as medical technology has improved, diagnostic technology, such as blood tests and imaging, has too. So, why does lupus remain shrouded in mystery, and are lupus patients being left behind because of it?
Describing living with lupus as a bitter pill to swallow[2], healthcare professionals recognise the seemingly insurmountable challenges which accompany a lupus diagnosis. Aside from the physical consequences, it acts as a disruptor in multiple aspects of an individual’s life.
Healthcare inaccessibility is increasingly recognised as an indicator of poor quality of life given the physical and psychological support lupus patients require. The South African healthcare landscape is a unique one marked by inequalities between the private and public sectors.
There is a notable shortage of Rheumatologists[3] in SA, and largely Africa, which is a challenge felt in both sectors albeit differently. While the general principles of management for lupus are well-established, specialist overview is still required. There are however, the following challenges:
- delayed specialist referral,
- specialist shortages,
- and lack of general physician awareness.
The public sector, which serves most of the population, is under-resourced. Patient care is compromised by challenges such as understaffing and medication shortages. For lupus patients, basic radiology like X-rays, CTs or MRIs, is fundamental in identifying disease progression or complications. Patient care in the public sector becomes increasingly challenging to navigate with limited resources.
In contrast, the private sector has access to greater resources for a substantially smaller number of patients. However, private patients detail rising unaffordability, physician apathy, and difficulties navigating the medical aid system. The private healthcare sector has increasingly been identified for its lack of accountability when regulatory bodies, such as the Council for Medical Schemes (CMS)[4] or the Healthcare Professions Council of South Africa (HPCSA)[5], fail to protect patients. While lupus patients in the private and public sectors may face distinct realities, both are valid experiences with unique challenges.
For many lupus patients, daily life revolves around medications—managing side effects, navigating access, and hoping for relief.
Many of the treatments for lupus, such as immunosuppressants, antimalarial drugs, and corticosteroids, come with adverse side effects and require careful monitoring for long-term complications. Variations of these therapies have been the standard of care for lupus patients for several decades in South Africa. However, newer medical technologies have presented themselves. Biologics, the superheroes in autoimmune warfare[6], are increasingly being integrated into South African practices and are allowing for dramatically improved outcomes.
Biologics have the “super-ability” to target specific immune cells. Their use as the standard treatment protocol would decrease the need for older therapies and provide the opportunity for improved quality of life for those with autoimmune diseases.
In theory, biologics sound fantastic, and in a perfect world, they would become the standard treatment protocol in the coming years. However, their cost alone creates inaccessibility for most South Africans. Another challenge is the regulation and integration of medical technologies by the state. Lupus patients continue to battle for increased biologic accessibility. Despite being registered in the US since 2011, the SA Health Products Authority has yet to give approval for the use of Belimumab (a biologic). Notably, there are a handful of clinical trials which also provide some patients with the opportunity to access these treatments.
Although one is more likely to access biologics as a private patient with medical aid, said accessibility hinges on several bureaucratic and legal guidelines. Patients are required to meet specific criteria to qualify for biologic coverage:
- the condition must be on the Prescribed Minimum Benefits list,
- the patient must be on one of the top plans offered by the scheme,
- and must have been unresponsive to the minimum treatment standard.
Among the most popular medical aids, these top plans total between R9,000 – R12,000 per month. For those with lupus, biologics offer a chance of a vastly improved quality of life. However, in their current form, the reality is that most South Africans will not be afforded this opportunity for many years to come.
Limited treatment access and a lack of local research make advocacy even harder for healthcare professionals.
For healthcare professionals, this raises a unique challenge. Knowing that there are possible treatment options which are inaccessible for most of your patients must be a frustrating experience. At the same time, physicians are limited by the substantial lack of research on lupus both in South Africa and Africa at large. This can make advocating for patients even more challenging when there is no supportive data.
There are also other actors at play-regulatory boards such as the CMS or the HPCSA, pharmaceutical companies, provincial and national government, and NPOs like AGF. To mobilise advocacy efforts and make meaningful changes for lupus patients, the correct actors need to be identified, and accountability needs to be taken by those responsible. Systemic changes of this nature can only occur if all parties come to the table.
When May ends, those with lupus will continue to navigate its daily realities.Too often, their experiences have been overshadowed by the “mystery” of the disease.
The narrative of lupus as a “mystery” disease is a myth which has been used to delay accountability and shift responsibility. It is time to unpack the stigma of lupus as a “mystery” disease and to start facing the challenges of lupus head-on.
Abigail Mostert is a postgraduate student pursuing her MA in Sociology at Stellenbosch University, where she also tutors in the Department of Sociology & Social Anthropology. Connect with Abigail on LinkedIn here: http://www.linkedin.com/in/abigail-mostert-sociologist
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