A man with a rare disease who is dependent on medication that is out of stock has said he feels like his life is being played around with by the health authorities as his health “hangs by a thread” and he receives mixed messages.
Joseph Mifsud suffers from Cushing’s Syndrome, a condition caused by having too much of a hormone called cortisol in the body, which can be serious if untreated.
An MRI had revealed a tumour in the pituitary gland and Mifsud, who has had two brain operations in the UK to try and control the disease, described it as “completely messing up” the body’s hormones.
Surgery, however, did not totally solve the problem as the damage was excessive.
Since 2014, the 65-year-old has been on Metyrapone 250mg, available only through the Health Department and not found anywhere else, Mifsud said.
While the Health Ministry told Times of Malta that the medication is in stock and available, a call to Mater Dei Hospital’s pharmacy, where these special tablets for rare diseases are dispensed from, contradicted this statement.
As Mifsud was himself informed only on Monday morning, when he had a doctor’s appointment and a CT scan and was passing by the pharmacy, the answer was that the medication is still out of stock, has been for a while and there was no indication when it would be available again.
Two days later, when he called again, he was first told the same thing. But when he said he was informed the pills were in stock and a check was hastily made, he was told he could go by later to collect his dosage.
He now finally has a month's supply, he said, heaving a sigh of relief and admitting that the change of tune has left him baffled.
At least, he has been been given the full required dose of eight pills a day and not just the two it had whittled down to before they became unavailable.
I can only sleep for three hours every day
Mifsud knows what it means to be without his pills. Five months ago, he spent seven weeks without his medication because it was out of stock.
He went back on them for a month but has once again spent the last two-and-a-half months without them.
Mifsud explained that if the hormone that is affected by the disease, cortisol, rises, it could lead to a heart attack.
He also suffers huge fatigue and insomnia at the same time.
“I can only sleep for three hours every day,” he said, describing his quality of life as “messed up”.
Blood tests taken last week indicate the hormone is currently at double the level it should be, Mifsud said.
In desperation, he has contacted Prime Minister Robert Abela and Health Minister Chris Fearne but has not heard back from either two weeks later, reaching out to Times of Malta instead.
His latest doctor’s appointment to see the way forward is heading towards the possible removal of the adrenal gland and becoming dependent on steroids, he said, as he remains in limbo about his medication.