A global campaign for Cystic Fibrosis (CF) sufferers are calling on all parents, patients and medical professionals in South Africa to register to show their support to gain access to a life saving treatment that’s not currently available in our country.
According to vertexsaveus.org, around 70 000 people worldwide suffer from CF, but only half have access to life changing medication that is produced by drug manufacturer, Vertex. “These amazing medicines have the power to help correct the gene fault which causes the illness and stop a slow and excruciating death,” they state on their website.
According to Belinda Nell, the South African representative for the Vertex Save Us Global Campaign, access to these treatments is not possible as Trikafta (the life saving treatment CF sufferers need) will cost approximately $311,503.00 (R4 794 981,25) per year. “No one in Africa or South Africa can afford these prices and Vertex has overlooked us because we are deemed as an unprofitable market. People are dying unnecessarily,” she says.
Belinda says she’s fighting for this treatment, not only to become available in South Africa, but also at an affordable price as she herself has lost a sister to CF. “We lost a sibling, Jen, in 2014 due to CF related complications. That experience was very traumatic as she died in my arms. We have lived our lives in hospitals and ICU wards, which is why I am fighting for this treatment – for my sister and thousands more to at least grow old and live normal healthy lives. It can prevent so much pain, suffering and heartache. If only the practice of profit over people can be stopped.”
How you can help
“Vertex Save Us is asking people and Cystic Fibrosis warriors to post their videos and posters on Facebook and Instagram or tweet their videos to gain maximum exposure to the tens of thousands of patients around the world without access to these medicines,” Belinda says.
Tell the world who you are or who you are representing, which country you are from and what it will mean to you to get access to Trikafta / Kaftrio, then post it to social media and tag @Vertexsave on Twitter, the Vertex Save Us Facebook Page or their Instagram Page and include these hashtags #vertexsaveus #vertexsaveme #vertexsavethem
Below are some videos from parents and kids around the world pleading with the pharma company to make Trikafta available at affordable prices worldwide:
— Vertex Save Us (@VertexSave) November 9, 2020
My name is Monika, I’m from Poland, I’ve got cystic fibrosis CF. My lungs condition is only 23%!!!
I need your help @VertexPharma ! Give me the chance for my life, for my future.
I don’t wanna die when I’m so young . #vertexsaveus #vertexsaveme pic.twitter.com/30khLEXW4C
— Monika Luty (@MonikaLutyCF) October 29, 2020
These are some of the South Africans who need your help – help them get this life saving medicine.
Xanet is an award-winning journalist and Living and Loving’s digital editor. She has won numerous awards for her health and wellness articles and was a finalist for the Discovery Journalist of the Year in 2009 and again in 2011 for the Discovery Best Health Consumer Reporting and Feature Writing category. She is responsible for our online presence across social media channels and makes sure our moms have fresh and interesting articles to read every day. Learn more about Xanet Scheepers.