ABOUT OUR MISSION

​

Little Rynah Du Plessis suffers from Cystic Fibrosis, an inherited disorder that causes severe damage to the lungs, digestive system and other organs in the body. Help us help her family raise the money to buy life-saving medicine that stops this condition in its tracks for as long as she has access to it.

​

​Children and adults born with Cystic Fibrosis are being denied access to Trikafta, the life-saving drug that has the potential to free them from pain and suffering and prevent a life-time of decline and hospitalisations. ​Worldwide, only 12% of people with cystic fibrosis (CF) have access to the triple combination therapy Trikafta. The high cost of Trikafta and similar small molecule therapies were seen as a major barrier to access outside the U.S. and Europe, its researchers noted, as “even after regulatory approval, the medicines are so expensive they are essentially unavailable unless reimbursed by government or health system authorities.” Modulator therapy drugs, like Trikafta — list prices range from $270,000 to $310,000 annually — which means they essentially remain unavailable to patients without assistance. Read more here: CF News Today or visit Vertex Save Us for more info and statistics. 

 

WE ARE NOT GIVING UP!​

 

Due to restrictive patent rights, we can only import Vertex modulator meds into South Africa. But the price tag is completely unattainable (it is not a once-off drug, but rather taken chronically). 

​

Vertex does not have a patent on Trikafta in Argentina. As a result, the pharmaceutical firm Gador is producing a legal generic version, namely Trixacar. Trixacar is roughly 10% of the cost. As mentioned, we cannot import the medication due to patent rights and legal challenges. The only way we can buy it is to fly to Argentina, buy and collect it from a pharmacy in Buenos Aires.​ This is achieved with a SAHPRA Section 21 approval license. The cost is not cheap, however (taking into consideration the annual trip and flight costs). But on a reduced dosage (which has proven effective), we are trusting we can self-fund the medication through fundraising and other initiatives. We are fighting for a long-term sustainable solution.

​

BUT in the meantime, we are not willing to sit and wait – CF is progressive. It is constantly raging inside, despite the person looking healthy on the outside.​ We are not allowed to receive Trixacar by Courier. Many have tried but legalities get in the way of successfully organising a courier out of Argentina.​​

​

So we plan to raise enough to cover one year's worth of meds as a start. With your help, this could be possible!