A Maltese woman with a life-threatening disease has been left “emotionally abused” after her pleas for the only treatment for cystic fibrosis were left unanswered.
“People with chronic illnesses, especially ones like cystic fibrosis could die in a matter of days without medicine. We should not be facing obstacles to our lives,” Mandy Vella, a 26-year-old told Lovin Malta.
Cystic fibrosis is a rare, hereditary disease that attacks the lungs and affects around 20 people in Malta. Patients with the disease tend to live shorter lives.
In an emotional letter online, Vella explained that she has met with countless politicians and boards for the last three years, to try to secure the only known treatment for cystic fibrosis once it’s approved safe for use.
The pioneering life-saving drug is called Trikafta. It is used to treat the cells of cystic fibrosis patients and give more strength to their lungs. While it has been a global breakthrough for those with the disease, it comes with a hefty price tag, costing tens of thousands a month for each patient.
“I’ve been insisting with authorities from 2018, that when it gets approved by the EU, Malta works to procure it,” she said.
Trikafta was eventually approved in 2020. She quickly approached Malta’s health minister again and while she was given an ear, Vella was left without a remedy.
“Then on 26th November 2020, I met with Robert Abela in Castille where we discussed my condition and the medicine that would save my life. It costs a substantial amount, but my words were clear that this is the only medicine that can save my life,” Vella recalled.
“At the time, I thought I wouldn’t only be given an ear but real help too because I wasn’t just speaking to the Prime Minister but a father.”
Vella was yet again left without answers, all the while her health was deteriorating.
“Malta’s board of medicines could have approved it in August 2020. I’ve been left in the dark for seven months. Waiting for someone with cystic fibrosis leave irreparable damage to the body,” she warned.
Following their Castille meeting, Prime Minister Abela referred her to the Malta Community Chest Fund, which helps fund treatment for patients with rare or chronic diseases.
She applied for help and brought her plea to the MCCF’s board. In January, the charity said that not only was the medicine expensive but that it would need to be added to Malta’s list of essential medicines.
“I feel abused mentally, emotionally by authorities. What’s the real problem? I want an answer before it’s too late. Who is going to defend us? Why do you claim that the health of the Maltese comes first when I’m begging you for help and I get closed doors?”
“You are destroying families affected by the disease,” she said.
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