South African Cystic Fibrosis Association (SACFA) Campaign: 2022

Jason van’t Slot did an 'Everesting' - which is the act of cycling laps of a single hill, until the height of Mount Everest (8848m or 29 000 ft) is accomplished in one ride and no sleep in 16 hours and 12 minutes on Saturday the 14th of May at the Taal Monument, Paarl, Cape Town, South Africa.

Jason lives with cystic fibrosis (CF), a life-shortening chronic 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 resulting in scarring of the lungs, diabetes and other deficiencies. 

An Everesting Challenge was first accomplished by a cyclist with cystic fibrosis, after he gained access to a lifesaving medication, Trikafta/Kaftrio, which genetically modulates and corrects the defective protein behind cystic fibrosis restoring some of its normal function at a cellular level therefore reducing symptoms of the cf. His previous attempt without the medication was unsuccessful. Cystic Fibrosis (CF) came with a life limit expectancy until Trikafta/Kaftrio was developed. The cystic fibrosis community didn't know if a medication like this would be available in our lifetimes. Now it is available, but unfortunately because of our geography and its financial cost it’s impossible for most of us to get it in South Africa.

Jason's fund raising efforts are twofold.  

Firstly, the fundraising initiative is to support legal and other costs necessary to facilitate access to this life changing medication. The South African Cystic Fibrosis Association SACFA (through the CF New Frontiers Committee) are happy to announce some progress in their engagement process with Vertex Pharmaceuticals. The aim is to gain access to Trikafta (and other modulator treatments) for all South African living with cystic fibrosis CF in South Africa, and other middle to lower income countries at an affordable price keeping in mind the poor economic status of these countries. This medication is available in selected first world countries, but at the moment those living with cystic fibrosis in South Africa, and other lower to middle income countries, have to go self funded overseas multiple times a year to get their hands on generics as patent laws prohibit access in their home countries. It’s also financially impossible for most to get it because at the moment the price for a 12 months supply of Trikafta is around R6 million or $326 000 (2023 prices).

In February 2023 Vertex Pharmaceuticals under fire as activists file case in High Court in South Africa, India, Brazil and Ukraine seeking access to generics despite Vertex’s patent in respective countries to end in 2037, with no action plan to distribute in the countries. The Vertex Save Us and Just Treatment movements put global pressure Vertex in several media outlets such as the New York Times, Ireland’s Independent.

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 and will and prove to be invaluable in improving healthcare for all those living with CF in South Africa. 

Jason successfully completed a half Everest (4424m) in training. "I dedicated it to somebody I know who passed away from cystic fibrosis last week. Cycling the last 1000m I kept remembering how privileged I am to be able to have the choice to suffer up the climb. She did not have that choice. I imagine that if she had Trikafta, she possibly would have been able to join me on the final lap" says Jason.

To support donate here or share the story on Instagram at Jason van't Slot and South African Cystic Fibrosis Association, as well as on Facebook at Everesting for Cystic Fibrosis, Jason van't Slot - cyclist/speaker, and South African Cystic Fibrosis Association.