Patients with multiple sclerosis are growing increasingly frustrated over the government’s failure to make available a new and expensive drug, as their condition may deteriorate faster without the treatment.

In the last Budget, the government had announced that people with MS would be receiving the free, pill-based medicine much needed by those who have failed to respond to injected treatment (beta-interferon) or whose disease is severe and rapidly getting worse.

However, the process allowing patients to collect the Novartis-produced Gilenya (fingolimod), which costs €1,760 per packet, has not yet been initiated as no calls for tenders have been issued.

Multiple sclerosis (MS) is a debilitating condition in which the body’s immune system eats away at the protective sheath over the nerves.

This condition may result in a deterioration of the nerves, a process that is not reversible.

Symptoms vary widely, depending on the amount of damage and the affected nerves. People with severe cases may lose the ability to walk or speak clearly.

Multiple sclerosis has no cure. However, treatments may help deal with MS attacks, manage symptoms and reduce progress of the disease.

Gilenya is used in the type of MS known as “relapsing-remitting”, when the patient has attacks (relapses) in between periods with decreased symptoms (remissions).

According to drug company Novartis, the medication has been proven to reduce relapse rates by nearly 60 per cent when compared with interferon injections.

Gilenya consists of 28 capsules, taken once a day. The Malta Community Chest Fund is providing financial help to those who are seeking the treatment – however, it does not reimburse the full amount, meaning that most patients would still need to find between €300 and €800 for a four week-supply.

Two anxious patients told Times of Malta that, despite being offered aid by the MCCF, they still could not afford to buy the drug.

Monica*, 55, was diagnosed with MS three-and-a-half years ago. Her first flare-up made her develop a stammer. Subsequent ones caused her to get extremely tired very quickly, made her body respond negatively to heat and did not let her mind coordinate and think clearly.

Can the government at least give us an indication of when it plans to make it available?

“My neurologist said the interferon injections weren’t working. I’ve been getting seizures – I’ve even had to be hospitalised during one of my seizures,” she said.

“The MCCF has given me €1,000 but I’ve had to stop working and can’t afford to pay €800 a packet. As a result I’m not taking them.

“I feel frustrated that the government hasn’t yet followed up on the measure announced in the Budget – I live in fear that the next MS attack will further cripple me.

“Gilenya only reduces progress of the disease – it does not reverse it.”

Monica’s husband appealed to the government to give patients an indication of when the medicine will be available.

“This is a second-line medication. MS patients are not put on Gilenya straightaway. Only if they are not responding to interferons are they switched to Gilenya.

“The patients would have a more severe case of MS if they require it. Can the government at least give us an indication of when it plans to make it available?”

Clara*, 36, was diagnosed three years ago. At present, her condition is not very bad – her only symptoms are numbness in her hands and feet.

However, in December, her doctor said she was not responding to the injection treatment.

“He thinks Gilenya would be good for me. I have applied for funds from the MCCF. But who can afford to pay €800 a month?

“I am at my wits’ end. The drug offers me a hope of stabilising my current condition. I’m still relatively well – it will keep me where I am.

“I feel angry – a month has already passed since the new year. I don’t know what tomorrow holds.

“Without the drug, I’ll end up in a wheelchair.”

Carmen Muscat, president of the Multiple Sclerosis Society of Malta, echoed members’ concerns.

Many had reported doing well with the new treatment. Ms Muscat pointed out that not everyone could afford it, despite assistance from the MCCF, as many patients tended to be retired from work.

“We’re anxiously awaiting the day when we’ll be told that patients may obtain the treatment free of charge.”

Questions sent to the Ministry of Health over a week ago remain unanswered.

*Names have been changed.