SA Cystic Fibrosis Association (SACFA) Campaign : May 2021
Jason van’t Slot is attempting a "cycling Everesting Challenge" in under 17 hours- the act of cycling laps of a single hill, until the accumulated height of Everest (8848m or 29 000 ft) is achieved in one ride and no sleep. Jason lives with cystic fibrosis, a life-shortening lung condition resulting in thick syrup-like mucus lining the organs and slowly causing them to malfunction and fail. Predominately this thick mucus affects the lungs and digestive system, resulting in permanent lung damage and malabsorption of food. Complications include severe lung infections, diabetes, osteoporosis and other deficiencies.
An Everesting Challenge was first achieved by a cyclist with cystic fibrosis, after he gained access to a life changing drug Trikafta/Kaftrio which restores some normal function of the protein at cellular levels and reduces symptoms of the disease. His previous attempt without the drug was unsuccessful and deemed beyond his capabilities.
Jason's fund raising efforts are twofold.
Firstly, the fundraising initiative is to support legal and other costs necessary to facilitate access to new drugs that genetically modulate and correct the defective gene behind cystic fibrosis. SACFA (through the CF New Frontiers Committee) are pleased to announce some progress in their engagement process with Vertex Pharmaceuticals. The aim of the process is to gain access to Trikafta (and other modulator treatments) for all CF patients in South Africa at an affordable price bearing in mind the county's poor economic status. (The current price to bring in a year’s supply of Trikafta is around R6million or $311 000).
Jeffrey Leiden, Vertex’s chairman, president, and CEO says “We saw a 63% reduction in pulmonary exacerbations, so that’s a dramatic clinically and statistically significant reduction in the major complications,” Leiden said. “In addition, we hear lots of stories from patients about how their daily life functions have been fundamentally changed by the medicine.”
Secondly, funding will also go towards maintaining an updated South African CF registry, which provides statistical data on CF patients necessary for negotiations with Vertex Pharmaceuticals, and other stakeholders, including medical aids and the South African Health Department. The benefits of a South African CF registry extend beyond the negotiations will and prove to be invaluable in improving healthcare for all CF patients in South Africa.
The Everesting attempt will take place in the first week of May (exact date TBC and weather determined) in consolidation of cystic fibrosis awareness month.
To follow the campaign or get involved to the journey to the of the world, follow us on Instagram at Jason van't Slot and South African Cystic Fibrosis Association, as well as on Facebook at Jason van't slot - cyclist/speaker, and South African Cystic
Fibrosis Association, and send us a message.