By Busi Lethole
Zola Brunner, the founder of BeyondLupus, says lupus patients have been directly affected by Covid-19 because there is a shortage of the drugs they require.
In April 2018, South African media entrepreneur Zola Brunner was only a month away from celebrating her 25th birthday when she received a life-changing phone call. Around noon, her rheumatologist informed her that her test results had returned positive for lupus. The nightmare she had dreaded all along, quickly turned into an earth-shattering reality.
“I was perplexed because it was not a straight diagnosis, I was told my symptoms also resembled that of lymphoma, a cancer of the lymphatic system,” she says.
Lupus is a chronic autoimmune disease causing inflammation and pain in any part of the body. The body’s immune system, which usually fights infections, attacks healthy tissue instead. Commonly affected are the joints, skin and internal organs such as the kidneys and heart.
While anyone can develop the disease, certain people are at a higher risk. This includes women between the ages of 15 to 44, as well as people from certain racial groups and ethnic backgrounds.
“A month later [after the diagnosis], I was sitting in hospital, and had no job,” Brunner says. All the trips to hospital meant she had to resign from a job she loved, as the producer of eNCA’s BackChat, a youth current affairs TV show.
She then made a decision to turn her pain into purpose.
In July that year, she started BeyondLupus, an advocacy page that has attracted a following of over 5,000 people around the world.
“I started it for two reasons. Firstly, I did not know anyone personally that had lupus and I wanted to relate to others. And secondly, I am a story-teller at heart and wanted to use this platform to give other lupus warriors the freedom to share and read each other’s experiences,” says Brunner.
Covid-19 impact on lupus patients
As Covid-19 turns the world on its head, those with low immunity need to be extra-vigilant as they are more susceptible to contracting the coronavirus.
For patients with autoimmune conditions such as lupus and rheumatoid arthritis, the pandemic has also brought with it another major problem: the reduced availability of the drugs used to treat them.
In March, US president Donald Trump was embroiled in controversy when he tweeted that “hydroxychloroquine and azithromycin, taken together, have a real chance to be one of the biggest game-changers in the history of medicine… hopefully, they will both be put in use immediately”.
Dr Joyce Ziki, a specialist rheumatologist in Johannesburg, says that plasmoquine/chloroquine, used for the treatment of lupus, is one of the drugs “that has been thought to prevent and or cure Covid-19 in conjunction with other drugs”.
“Plasmoquine/chloroquine was being used for prevention and treatment of patients with Covid-19 and hence it became unavailable in pharmacies in South Africa. Many patients with lupus or rheumatoid arthritis could not get the drug. The situation was worse in late March until May. Supplies are beginning to improve now,” she says, further adding that information regarding its efficacy in the management of patients with Covid-19 is currently controversial and inconclusive as studies are ongoing.
“Many members of the BeyondLupus community have come to me to tell me that they have been directly affected because there is a shortage of supply for [the drugs] and they are upset,” Brunner says.
As a result, BeyondLupus published a petition to put forward in collaboration with the Lupus Foundation of South Africa concerning the stockpiling of the drugs to the South African Health Products Regulatory Authority (SAHPRA).
Brunner says SAHPRA responded saying they would keep aside the plasmoquine/chloroquine medicine specifically for lupus patients.
“If you want to ensure that your medication supply is on track, you can message them or email them and they will make sure that they store it,” offers Brunner.
In a web statement, Dr Boitumelo Semete-Makokotlela, CEO of the South African Health Products Regulatory Authority (SAHPRA), urged pharmacies to effectively manage the access to chloroquine containing products and limit any possible stockpile as “it could have important negative public health consequences”. Semete-Makokotlela further stated that the benefits as well as the potential risks of the use of chloroquine as a treatment in patients with coronavirus, are still being investigated.