Patients with multiple sclerosis who were set to switch to a new, costly drug after the government added it to its formulary list last week are being denied it without further explanation, Times of Malta has learnt.
The government had announced that people with MS would be receiving the pill-based medicine, which was promised in the last Budget, by April.
The first dose of Gilenya (fingolimod) must be administered in a hospital setting where the patient’s heart rhythm is monitored for at least six hours. After being given the green light, the patient can continue taking the pill daily from home.
Patients who were already on the Novartis-produced Gilenya have been collecting it for free since last week.
However, new patients who were to take their first dose at Mater Dei Hospital in the first weeks of April had their appointments abruptly cancelled. No further appointments were scheduled.
Sources said that the Health Ministry issued a circular to all neurologists, instructing them not to administer the drug to new patients.
Gilenya is a second-line treatment, prescribed only when MS patients are failing to respond to injected treatment (beta-interferon) or whose disease is severe and rapidly getting worse. There are 13 patients currently on the drug.
MS is a debilitating condition which results in the deterioration of the nerves and has no cure. Treatment, however, plays an important part in helping slow down its progress as once an MS attack occurs, the damage is non-reversible.
Gilenya costs €1,760 for a four-week supply and the Malta Community Chest Fund was providing financial help to those who were seeking the treatment before it was added to the government’s formulary. However, it did not reimburse the full amount, meaning that most patients would still have needed to pay between €300 and €800.
A number of patients expressed their frustration and deepening concern to this newspaper.
Monica*, 55, was meant to be administered her first dose on April 3. The day before, she received a call from her neurologist – who had booked her appointment in the first place – informing her that her appointment was cancelled.
“He told me they’ll phone me ‘when the pills arrive at Mater Dei’. I find it very strange – my neurologist was the one who had booked me an appointment the week before. Why cancel it so suddenly? I feel very anxious. Once again we’ve been left dangling, not knowing when we’ll be able to take the drug.”
Similarly, 36-year-old Clara*, who was diagnosed with MS three years ago, recently phoned up her neurologist to ask when she may take her first dose of Gilenya, after being told in December that she was not responding to the injection treatment.
She was told that things were “on hold” and that the pills were not yet available. The worst thing about it all was that we were given no reason. Gilenya was supposed to be given out since January; why promise it in the Budget if you’re unable to deliver? And I’m not talking politics here – this is a health issue.”
Carmen Muscat, president of the Multiple Sclerosis Society of Malta, said she was contacted by an MS sufferer who had her hospital appointment cancelled.
“It’s very unfair. People who weren’t taking Gilenya weren’t doing so because they couldn’t afford the monthly difference. People are confused – no one explained to them why their appointments were abruptly cancelled.”
Questions sent to the Health Ministry were unanswered by the time of writing.
*Names have been changed.