A determined group of parents has filmed a video campaign and started a petition to raise awareness about the exorbitant costs of treatment of cystic fibrosis.
The families hail from different parts of Cape Town including Fish Hoek, Milnerton and Elsies River.
Jolene du Plessis, from Fish Hoek, has a six-year-old daughter who had a lobectomy of the right upper lobe in her lung due to the disease.
“As parents, we feel helpless,” said du Plessis.
“There is a medicine that literally could save our daughter’s life and also improve the quality of her life – but we cannot afford it. In fact, only about 12% of eligible cystic fibrosis patients around the world actually have access to these drugs.”
The lobectomy took place just before Rynah’s third birthday and at around the same time, the family heard that a life-changing new drug, Trikafta, had been approved by the US Food and Drug Administration.
She adds without the life-saving drug premature death would most likely occur.
“If you are not on the drug then you have to be hospitalised and it affects people differently. My daughter is still young, but once you pass puberty there is a degradation of organs and lungs.”
Three years after the operation, Rynah is now eligible to take Trikafta. But her family still has no hope of gaining access as the drug is expensive.
The parents’ campaign is in response to an “insensitive video” posted by a pharmaceutical company that was widely shared on social media in November last year.
In the post, it shares the message that “damage to the lungs and other organs caused by cystic fibrosis (CF) were inevitable” and that people with CF should not wait before seeking treatment.
However, it fails to mention the costs for treatment are $311,000 (approximately R5,3 million) per patient, per year.
“The main message of our video and petition is, how can you put profit before life? You see people are dying. Life expectancy is extended with the drug and without it you don’ have quality of life, it’s very sad. It is just so over-priced.”
Working with members of the patient advocacy group ‘Vertex Save Us’ the local video was filmed at Noordhoek Commons.
“We appeal to everyone to please take a minute to sign and share our petition,” said du Plessis.
Neil and Lynn Vels of Milnerton, also know what is at stake when treatment with effective drugs is delayed. Their son Alex (3) is featured in the video splashing in a puddle. “Alex was born with meconium ileus (a bowel blockage common with CF) and immediately placed in NICU,” said Neil.
“He had emergency surgery with. His intestines had twisted, and one-third of his intestines had to be removed. It took some time for his gut to begin to work properly after the operation and there was a time when we thought he wouldn’t make it.
“Miraculously he turned the corner. It was also about this time that we received the results of genetic testing that indicated he has CF. He was able to go home after 20 days in NICU and has recovered well.
“He is on Creon for pancreatic insufficiency and twice daily nebuliser with hypertonic saline for the lungs as well as a number of vitamin supplements to prevent and treat deficiencies and medication to support his liver.
“The doctors are currently concerned about his liver as they’re detecting signs of fatty changes in his liver and it is enlarged. He goes for more tests at the end of the month. His medical team is keen to try to get him on to a modulator therapy to see if it will help prevent ongoing damage to the liver.”
The central message of their video is that there needs to be a global access plan, to get the best medicine to all patients with cystic fibrosis, regardless of where they were born.
Around 32 910 people have since signed the petition. For more information visit https://bit.ly/vsupetition
