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Autoimmune disease in South Africa — increasing number of patients denied life-changing therapy

Autoimmune disease in South Africa — increasing number of patients denied life-changing therapy
US actors Will Smith (L) and Jada Pinkett Smith (R) attend the premiere of the movie 'Emancipation' at the Regency Village Theatre in Los Angeles, California, US on 30 November 2022. Jada Pinkett Smith is affected by the autoimmune condition alopecia areata. (Photo: EPA-EFE/Caroline Brehman)

Individually, autoimmune conditions do not attract as much attention from healthcare administrators or funders as infectious diseases, such as HIV and TB, and other non-communicable diseases.

The Will Smith “slap that was heard around the world” during the 94th Academy Awards in 2022 created a media feeding frenzy, but scant attention was paid to the cause of this furore, the autoimmune condition affecting Jada Smith: alopecia areata.

In the early 20th century, German physician Paul Ehrlich coined the term “horror autotoxicus” to describe a condition of the body’s immune system turning on itself and in 1938 the first autoimmune condition, haemolytic anaemia, was described, whereby the immune system attacks and destroys normal red blood cells. Since then more than a 100 autoimmune diseases have been identified.  

An autoimmune disease is characterised by the activation of the body’s immune system against one or many organs, causing inflammation which, if left unchecked, causes permanent damage.  Common autoimmune diseases include rheumatoid arthritis, juvenile arthritis, ankylosing spondylitis, scleroderma, “lupus” (systemic lupus erythematosus),  Grave’s disease, psoriasis, multiple sclerosis, Type I diabetes, coeliac disease, Crohn’s disease and ulcerative colitis. Autoimmune diseases cannot be cured, they affect all age groups and tend to be more common in women than in men.  

Will Smith, Chris Rock

US actor Will Smith (right) swings at US actor Chris Rock during the 94th annual Academy Awards ceremony over an assumed verbal insult of Smith’s wife, US actress Jada Pinkett Smith, at the Dolby Theatre in Hollywood, Los Angeles, California, US on 27 March 2022. (Photo: EPA-EFE/Etienne Laurent)

Autoimmune disease rates increasing

One in five Americans live with an autoimmune disease and the numbers are increasing year on year. In South Africa, autoimmune diseases are increasing and it is estimated that 2.5 million people are affected in the country. Data from the Inflammatory Bowel Disease Africa (IBD Africa) registry shows an exponential increase in newly diagnosed Crohn’s disease and ulcerative colitis patients over the past 50 years in South Africa. 

Why the increase in autoimmune diseases? This is one of the intriguing medical questions of the 21st century. Our immune systems evolved over millennia to protect us against infections which were the major cause of death amongst our ancestors. During the 20th century, advances in modern living, such as improved hygiene, vaccinations and widespread use of antibiotics, resulted in the eradication and prevention of many infectious diseases that were previously fatal. One could argue that a highly evolved and efficient immune system is now “rendered idle” and turns inward to “keep busy”. This theory, called the hygiene hypothesis, is supported by the fact that autoimmune diseases are less prevalent in impoverished rural communities where hygiene is poor and access to primary healthcare  limited. By comparison, in populations where there is rapid economic development and migration from rural to urban areas, there is an attendant increase in autoimmune disease. 

Other factors important in the development of autoimmune diseases include a genetic predisposition and other environmental triggers, such as pollution, stress and diet. 

Treatment complications

Patients living with autoimmune diseases in South Africa face enormous challenges in obtaining an accurate diagnosis and accessing effective treatment to control their condition, thus preventing permanent damage and disability, be it to their joints, brain or gut. Diagnosis of an autoimmune condition is difficult due to poor doctor awareness, lack of standardisation of diagnostic tests, such as autoantibody assays, and limited access to expensive diagnostic tests, such as CT and MRI scans. Individually, autoimmune conditions do not attract much attention from healthcare administrators or funders and are often overshadowed by infectious diseases, such as HIV and TB, and other non-communicable diseases, such as heart disease and cancer. However, collectively they represent a significant health problem in the country.  

Successful treatment of an autoimmune condition, termed sustained remission,  requires targeted suppression of a component of the immune system thereby controlling the autoimmune disease. In addition, drugs need to be easily administered, have low toxicity and be affordable. For most of the 20th century, steroids (cortisone or corticosteroids) were the only treatment available for autoimmune diseases. Steroids have a shotgun effect on the immune system controlling the autoimmune disease but compromising it at the same time, increasing the risk of both mild and severe infections. They also have wide-ranging side effects and are devastating if used long-term in children, stunting growth, amongst other problems. Steroid-sparing immune suppressants for the treatment of autoimmune diseases, such as azathioprine, ciclosporin and methotrexate, prevent the reliance on steroids but come with their own side effects and long-term toxicity issues. 

Medical advances and pathways

In 1979 a brief article appeared in the New York Times regarding a San Diego firm, Hybritech, which developed a laboratory-produced antibody with the potential to treat disease, heralding the therapeutic monoclonal antibody (MAB) industry. Therapeutic monoclonal antibody drugs or biologics have become an important modality to treat autoimmune diseases, cancers, organ transplant rejection and even high cholesterol. Biologics are large protein molecules, similar to our own protective antibodies produced in response to an infection or vaccination, but designed to target and inactivate an important component in the pathway of a specific autoimmune condition. For example, one of the first biological drugs developed targeted the chemical messenger, TNFα, an important immune system coordinator, and is used to treat rheumatoid arthritis, ankylosing spondylitis, Crohn’s disease and psoriasis. 

In 2000, infliximab (Revellex®), an intravenous biological drug, was approved to treat Crohn’s disease and rheumatoid arthritis in South Africa.  At present there are a number of other biologics, covering a wide range of autoimmune conditions, registered by SAHPRA. In recent years the registration of biosimilars (the equivalent of a biologic generic) has made these drugs more affordable and prices will continue to fall as more biosimilars become available. 

Barriers and limited access in South Africa

More than 20 years since the first biologic was registered in South Africa, with overwhelming evidence to support their efficacy and safety, as well as  consistent price reductions, these drugs remain beyond the reach of most autoimmune patients in the country. The devastating reality is that accessing a biologic in South Africa is too often unrelated to the severity of a patient’s illness, the degree of disability, or even the treating doctor’s decision. 

In the public sector, financial constraints limit access to a minority treated in one of only a few centres around the country. Addressing this shortfall is the ongoing work of public, private, and nonprofit organisations too extensive to describe here.

Private-sector access, on the other hand, hinges on three criteria: 

  • Is the autoimmune condition included in the Prescribed Minimum Benefit (PMB) list?
  • Is the patient on one of the highest and most expensive medical plans? and
  • Has the patient failed treatment included in the Department of National Health’s Treatment Algorithm, a minimum treatment standard below which medical schemes may not fall?

The first hurdle, inclusion in the PMB list, is almost insurmountable for those unlucky enough to be diagnosed with a non-PMB disease. Some autoimmune conditions, like rheumatoid arthritis and Crohn’s disease, are included in the PMB chronic disease list, while other equally destructive conditions, like axial spondyloarthritis, are not. 

The list itself defies logic. Juvenile arthritis, for example, is only classified as a PMB if diagnosed before 16 years of age. This collection of diseases loses its PMB status in anyone over this young age, not because the disease disappears but because of arbitrary distinctions between one kind of autoimmune inflammatory arthritis and another.

autoimmune disease

Blood sample for autoimmune disease test and diagnosis of autoimmune disorder. (Photo: iStock)

Medical aid schemes’ spurious obstruction

PMB status is significant because it obliges medical schemes to fund appropriate treatment and care, regardless of a member’s plan type, something which most members are either unaware of or unable to enforce. As a result, the medical scheme mantra that specialised treatments like biologics are only available on the highest tier plans is almost universally believed by members and doctors alike.

The final hurdle for the minority with the ‘right’ plan type sees biological therapy prescriptions vetted by medical schemes to determine ‘appropriateness’, further hindering access to care and increasing the administrative burden on doctors. 

Catherine McCormack, a mother of a child with juvenile arthritis and executive director of the patient organisation Arthritis Kids South Africa, is all too familiar with the bureaucratic and legal obstacles in accessing care for PMB conditions. Having believed that specialised treatments were limited to high-end plans, Catherine was incredulous when she discovered medical schemes routinely reject PMB applications for biologics, despite regulations protecting access to appropriate treatment for members without viable options. 

Having seen the life-changing impact of biologics on her daughter’s disease, Catherine launched her first case in early 2021 on behalf of another child with juvenile arthritis. Four months later, the Council for Medical Schemes (CMS) ordered the medical aid to fund the child’s biologic despite the family’s limited plan type. By the end of 2021, Catherine had four more rulings and had resolved several more cases before a ruling became necessary. She was struck that no matter how often she reversed a funding decision or how many rulings were made in her favour, schemes continued to reject lawful applications for biological treatment. She took her concerns to the CMS to reverse what she described as systemic issues in assessing legally protected applications for biologics.

To date, Catherine has represented almost 50 members and has succeeded every time in reversing funding decisions denying appropriate biological treatment, a testimony to the clarity of the relevant regulations despite protestations by schemes. 

In theory, anyone can do what Catherine does, but patients and their families often lack the necessary time, confidence, or energy to challenge decisions by large corporates in the face of ubiquitous, jargon-filled misinformation.

Carte Blanche featured Catherine’s work in a recent segment highlighting the plight of medical scheme members for whom a plan upgrade is a financial impossibility. Discovery Health, the country’s largest medical scheme by a significant margin, subsequently confirmed a change in PMB application processing to include the protective regulations, bringing members one step closer to accessing essential, legally protected treatment. Hopefully, this change marks the start of a new era for medical aid members, one where knowledge of the law by the member is not a requirement for medical schemes to fulfil the law, but only time will tell. 

In the background, the battle continues against schemes like Profmed and Medihelp that consistently rely on large legal retainers and spurious arguments to circumvent unambiguous regulations and statutory obligations. As a result, many of their clients living with autoimmune diseases are left stranded, suffering untold harm by being denied access to life-changing therapy. 

To this end, Catherine has joined forces with gastroenterologist Dr David Epstein, director of Inflammatory Bowel Disease Africa and specialist IBD nurse Karin Davidson to form the Autoimmune Alliance of South Africa, which will advocate for South Africans living with these potentially devastating diseases to improve access to treatments that can effectively control autoimmune diseases and allow patients to live life to their full potential. DM

Dr David Epstein is director of Inflammatory Bowel Disease Africa, Catherine McCormack is executive director of Arthritis Kids South Africa, and Karin Davidson is a specialist inflammatory bowel disease nurse


Comments - Please in order to comment.

  • Chris Kassianides says:

    Thank you for this excellent piece highlighting the challenges facing patients and physicians in their plight to gain access to Biologics in South Africa for these debilitating autoimmune diseases. Whilst there are funders that fund extensively and have loosened the accessibility according to funder plan a lot more needs to be accomplished and patient advocacy is vital and an important part of the drive.
    Chris Kassianides
    Chairman Gastroenterology Foundation of SSA

  • David Epstein says:

    Thank you DM for publishing this article. Again this week I received a letter from Medihelp declining biological therapy for a 9 year old girl with Crohn’s disease who has failed all all other therapies. Difficult to explain to this child that treatment available will not be covered by her medical aid. Very easy for Medihelp to send what appears to be an automated rejection letter by a faceless M. Jacobs, Principal Officer ….. who does not have to look this child in the eye.

  • Bev French says:

    As a person living with Crohn’s Disease, I have experienced the vagaries of Medihelp Medical Scheme.
    I have had surgery previously, taken steroids and been on the Crohn’s disease elimination diet. As well as daily symptoms, I have the long term effects of chronic malnutrition – anaemia and osteoporosis. I have experienced episodes of subacute bowel obstruction due to narrowing of the intestine.
    When the gastroenterologist sent a letter of motivation to Medihelp for treatment with Biologicals, they replied that I would need to change from the second highest plan option to the most expensive plan and then reapply.
    The cost of the biological treatment (Adalimumab) is R4859 per month. Changing to a higher option is more than double that.
    I do not understand why Medical schemes can get away with not paying for treatment for chronic conditions that are listed as Prescribed Minimal Benefits.

  • Eran Taylor says:

    Thank you for this important article.

    I was diagnosed with ulcerative colitis in 2020 and since then have had 6 hospital admissions. I require treatment with infliximab, including a rescue therapy dose during my latest admission. I am a member of Profmed, and the scheme has consistently declined to pay for any of this treatment. I have had to pay cash for every dose I have received, at huge financial burden to myself.

    Additionally, the admission to the day ward that I require for its administration is also not funded, adding to the already enormous cost.
    My treating gastroenterologist has tried numerous times to get funding, including sending a comprehensive appeal after the funding was declined. But Profmed is still insistent that I need to upgrade to their most expensive plan to have this medication covered, still with a 20% copayment.
    This plan is so expensive that it works out cheaper for me to continue paying cash for the treatment.

    When quoting the law in our appeal, Profmed responds and states again that I need to upgrade my plan.

    I am hopeful that something can be done to change this in future as self funding this medication is not sustainable.

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