“We have seen tremendous improvement in him. He’s changed, and he’s become like a new person,” said the grandmother of Mikaeel Poonan, Shamima Kola Poonan, on the positive effect of the Cystic Fibrosis (CF) treatment on her grandson. “He’s doing a lot of things that he was not able to do before.”
Additionally, she mentioned that his lung function had significantly improved, increasing from 22% to 54%. This positive change has resulted in a reduction in his chronic coughing.
Moreover, his revived appetite has led to weight gain and a considerable surge in energy levels, enabling him to perform daily tasks more effortlessly. He has gained enough strength to attend college.
Mikaeel’s struggle with declining health and deteriorating lung function was initially attributed to his diagnosis of CF. However, his family and friends devised various financial initiatives to obtain a generic CF treatment from South America, particularly Argentina.
A report by the Cystic Fibrosis Association (SACFA) states that approximately 550 individuals in South Africa have been diagnosed with CF. Unfortunately, due to the steep cost of medication, many individuals cannot access the much-needed treatment for their condition.
The Goodwill of Others
Instilled with hope, Mikaeel’s family and friends initiated a fundraising campaign to procure the necessary treatment. Generous individuals, who contributed through donations and organised events like music shows and hikes, played a pivotal role in enabling them to acquire a six-month supply of the medication.
However, since Mikaeel requires a year’s treatment, the endeavour to secure additional funds is still ongoing.
Shamima shared that Mikaeel’s health and overall well-being have gradually improved within less than two months of using the treatment. Despite his progress, he remains mindful of those unable to afford the medication.
“Mikaeel has a lot of mixed feelings because he’s one of the lucky ones to get the medication. He’s thinking of people that are not able to get it and to enjoy what he’s enjoying at the moment.”
A collective effort involving individuals, professionals, and organisations is underway to make CF treatment more accessible to South Africans diagnosed with this condition.
SMread| Gwede Mantashe faces backlash for pro-fossil fuel stance amid environmental concerns
Hope in South America
Initially, an American pharmaceutical company called Vertex offered Mikaeel an opportunity to participate in a trial program for the CF drug. However, when the pandemic struck, the trial in South Africa had to be abandoned.
Due to the biotech company’s monopoly over the manufacturing and sale of the drug, along with the existing patents that prevent other companies from producing it, the challenges faced by families and patients in obtaining the medication are further amplified.
“The company Vertex that manufactures the original drug is based in the US, and they have patent agreements with all the countries … [Therefore] generics cannot be made in any other country besides Argentina because Argentina has not recognised the patent laws.”
Moreover, the treatment cost is beyond most individuals’ reach. Vertex charges approximately five million rands per year for the treatment. However, they managed to acquire the medication from Argentina, where it is sold at a significantly lower price compared to Vertex’s costs. Despite this, it still needs to be more affordable for many.
“There are 540 CF patients in South Africa. Less than 100 are getting the medication from Argentina, all because of the affordability.”
