Imagine you fell ill, were diagnosed with cancer and became unable to work. Imagine then being denied sickness payments from your employer’s insurance company because they arbitrarily dismiss the report from your oncologist and suggest you rather need to see a psychiatrist. Imagine the distress and exhaustion of having to appeal and provide second and third opinions to back your claim, all while undergoing chemotherapy.
This cruel process is exactly what is happening to people across the world with ‘post-acute sequelae of COVID-19’. There are an estimated 65 million suffering from Long Covid, with numbers increasing every day, according to a January 2023 paper in the journal Nature.
A recent BBC World Service radio documentary interviewed a Long Covid researcher whose previous work was in sports science. She related how she had asked people with Long Covid to walk up and down the corridor outside her office for six minutes before drawing blood. She was shocked to find it was showing similar cellular exhaustion to the blood of people who had just completed a marathon.
But why the surprise?
Tests have been showing the same results for people with post-infectious energy-limiting illness Myalgic Encephalomyelitis (ME/CFS) for decades.
Since the arrival of COVID-19, patient advocate organisations have been underlining extreme Post-Exertional Malaise (PEM) as the hallmark symptom of ME and Long Covid, rather than the woollier notion of ‘fatigue’. In the wake of a post-viral pandemic of mass disability, the world is finally waking up to the devastating impact of metabolic energy impairment on society and the global economy.
Last year, the Daily Maverick reported on how Mlindeni Gabela, a 39 year old father of two from Khayelitsha, thought he was recovered from being hospitalised with Covid-19 in May 2020, until returning to work made him fall ill again. Increasing shortness of breath, exhaustion and dizziness made it impossible for him to continue in his job as an industrial mixer at the Sasko bakery in Epping. He was struggling to walk, let alone carry heavy sacks of flour.
When Gabela started having palpitations and blackouts, the Pioneer Foods company doctor diagnosed Long Covid and sent him to the Groote Schuur respiratory clinic. However, because all standard tests came back normal, his debilitating symptoms of “chest pains, fatigue, poor sleep and inability to concentrate” were dismissed as “largely psychiatric”.
But his physical capacity continued to decline and Gabela was booked off work on temporary disability in October 2021. When his sick leave ran out three months later, Gabela turned to a Facebook group called ME/CFS Long Covid and me for support. The administrator from the ME CFS Foundation of South Africa identified an educated health care professional to assess him.
The Professor at UCT (who asked not to be named) provided a detailed report to Gabela’s employer’s insurance company confirming not only his diagnosis of Long Covid, but an additional diagnosis of ‘moderate to severe’ Myalgic Encephalomyelitis according to the strict International Consensus Criteria definition, adding:
“He is particularly unable to manage more than 5 stairs and is only able to walk short distances on a flat surface indoors. He is unable to do laundry, or any physical activities in the home which require exertion of more than 10 minutes… He is able to prepare small snacks or meals for himself (cereal, sandwiches) but is unable to prepare a full meal. At this stage of his illness he should not be engaging in any physical activity other than basic self-care.”
Yet Gabela did not receive a single cent from Pioneer Foods between January and August 2022, and his disability claim was turned down in September 2022. Having been unable to pay rent or support his children for eight months, and in the midst of dealing with a diagnosis of chronic disability, Gabela was now forced to mount an appeal.
In my role as volunteer communications liaison officer for the ME CFS Foundation, I have written dozens of emails on Mr Gabela’s behalf, seeking clarity on the progress of his appeal. We have been asking the same questions, over and over, to Pioneer Foods parent company PepsiCo’s HR department and medical insurer, on a weekly basis, for more than nine months.
It took eight requests for a copy of an additional Occupational Therapy report on Mr Gabela demanded by his employer to be emailed to him, three months after it took place. While Mr Gabela, who struggles to leave the house, was given a one month deadline to complete all the supplementary assessments and reports for his appeal, PepsiCo’s healthy HR department took another five months to deliver a decision.
Over nine months, we have made 12 written requests to see a breakdown of erratic temporary disability payments made to Mr Gabela, and the formula for his ill health retirement lump sum payment. Nothing except excuses have so far been provided.
The complete lack of transparency, courtesy or dignity afforded to Mr Gabela is a shocking indictment of the Pioneer Foods Provident Fund and companies involved.
When asked to review the correspondence sent on Gabela’s behalf, an independent financial advisor said “The handling of this case is quite shocking and I think the employer has a lot of explaining to do. There is a big gap between what should have happened and what did happen. ”
After the head of the HR dept refused to respond, citing how busy she was preparing CCMA submissions, in late March Mr Gabela had to travel to benefit councillors AlexForbes in Stellenbosch to obtain a brochure with the basic information we had been requesting. Gabela discovered that he should have been entitled to 12 months temporary disability payments on full pay while his permanent disability claim was being considered.
Instead he had spent most of the year – including a penniless Christmas – relying on the goodwill of others.
The independent financial advisor stated “any good employer should have bridged this gap to ensure their employee was taken care of. The Board of the Pioneer Foods Provident Fund seem to have abdicated their fiduciary duty to protect the interests of their members.”
When invited to comment, Pioneer Foods Provident Fund manager Jan Swanepoel said that their insurer first declined the claim as there was “no physiological evidence of respiratory disease”, and that the “termination of Mr Gabela’s ongoing receipt of an income replacement benefit” was because “there was no diagnosis of a medical condition in support of his eligibility”. This ignores the fact that Pioneer Foods’ own company doctor had diagnosed Long Covid when Gabela started collapsing at work.
Swanepoel added “the company acknowledge (sic) the delays in concluding the claims and resulting difficulties that Mr Gabela has endured and for this extends its sincere apologies.”
But were the delays due to plain incompetence or something more malign?
The UCT Professor who wrote Mr Gabela’s assessment commented that this is standard medical insurance industry procedure:
“It seems that one of their strategies is to exhaust people so that they stop pursuing their claims. We see this with Chronic Fatigue Syndrome, Long Covid, car accidents and a whole range of other disabilities.”
This tactic is particularly cruel when inflicted on people suffering energy-limiting diseases like Long Covid and ME/CFS. How can they be expected to endure a long drawn out battle to obtain the funds to which they are entitled when they scarcely have enough energy to stand up and make a sandwich?”
A cursory glance at Long Covid groups on social media shows that Mlindeni Gabela’s story is just one of thousands being repeated across the country. Psychologisation, obfuscation and delaying tactics are deliberately being implemented by employers and insurers to exhaust the already exhausted, to force them to give up. However, Gabela is defiant: “They have shown that they don’t have empathy or sympathy for people who are working for them. It’s all about protecting their business, they don’t care about the people’s suffering.”
As more examples come to light, the ME CFS Foundation is calling on our government to step up to protect the growing number of Long Covid sufferers and not allow them to be mistreated the way people with ME have been globally by the medical establishment. They say South Africa must not slavishly follow the transatlantic pattern of health insurance industry and government collusion to deny disability support to chronically ill patients. Our Constitution respects both science and human rights.
Like people with HIV, particularly in the 1980s and 1990s, people with Long Covid are suffering stigma and abuse on top of severely debilitating symptoms. But unlike people with HIV, the energy-impaired are mostly unable to march and protest. The time has come for allies to stand up for these abandoned patients who literally cannot stand up for themselves.
First published in Daily Maverick 168 newspaper on 13th May 2023
Photo: Mlindeni Gabela, former Pepsico employee battling to get disability benefits from Pioneer Foods Provident Fund
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