A British man who has benefited from a life-saving medicine is urging the Maltese government to provide the “miracle drug” to cystic fibrosis patients after his life “improved drastically” within days of starting to use it.
Richard Hunter, 36, was diagnosed with cystic fibrosis when he was six months old.
After a lifetime living with the genetic disease, his life turned for the better thanks to the new drug which he got last September through the UK NHS.
Hunter knows very well how deadly the disease can be, having lost his elder brother, Robert, to cystic fibrosis at the age of 15.
Hunter, who is married to a Maltese woman and lives in the UK, is now urging the Maltese government to provide this lifesaving drug to cystic fibrosis patients – one of whom is 26-year-old Mandy Vella.
I can only describe this drug as a miracle
Some weeks ago, Vella resorted to Facebook to speak up about the fact that her family could not afford the medication, which costs about €18,000 monthly.
“My life is being stamped with a price, the doors of the authorities are all closed. My wish for the only medicine that can save my life and the lives of all those Maltese who suffer from cystic fibrosis are being ignored,” she wrote.
The life-saving drug called Kaftrio (known as Trikafta in the United States) was licensed in the European Union in August 2020 after it was approved by the FDA in the US the previous year.
It is the first drug that works to boost the efficiency of a defective protein resulting from a gene mutation which causes cystic fibrosis.
Hunter has joined the chorus of support for Vella, and other cystic fibrosis patients, and has also written to Prime Minister Robert Abela and Health Minister Chris Fearne.
He wrote: “I can only describe this drug as a miracle. It’s the closest thing there is to a cure. There are eight people in Malta who would hugely impact from using this drug including Mandy.
“She is 26 years old and has 23 per cent lung function. Imagine that, she has lost 75 per cent of her lungs and, let’s be frank, time is extremely limited for her.”
Hunter urged the government to support Vella to get free access to the medication from the drug company, Vertex, on compassionate grounds.
Josette Falzon, a Maltese mother whose daughter suffers from cystic fibrosis, has been organising fundraisers since 2005.
She said that, over the years, thousands of euros were sent to the CF Trust in the United Kingdom to go towards research, including for Kaftrio.
“It is a pity that, now this treatment is here, it is not available to Maltese cystic fibrosis sufferers,” she said.
The Health Ministry said the inclusion of cystic fibrosis medications in the Government Formulary List Advisory Committee is being discussed.