The ALS Ice Bucket Challenge drenched Malta the week after the feast of Santa Marija. The Prime Minister, the Leader of the Opposition, the Minister for Energy, Water Conservation (sic!) and Health, the Auxiliary Bishop and the editor of this newspaper took the challenge, in the tail end of that week.

This challenge should not be an easy way of getting cheap publicity but it exists to raise awareness and collect money for researching amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. As a result of the progressive degeneration of the motor neurons in ALS the ability of the brain to initiate and control muscle movement is lost while total paralysis is also expected.

While public awareness of ALS was justifiably being given so much importance by the Prime Minister and the Minister for Health, those suffering from another type of progressive neurodegenerative disease – multiple sclerosis – were going through a period of unnecessary tension and suffering induced by the inefficiency still existing in the Ministry for Health’s medicine procurement division. I have already written about this decades-old problem on more than one occasion.

Multiple sclerosis (MS) is a nervous system disease that affects the brain and spinal cord. I need not go into the harsh effects on those suffering from the condition; suffice it to say that people with this condition are considered severely disabled.

One of the medicines used to control (not cure) the effects of MS is Extavia, an injection made by Novartis that patients self-administer day in, day out. It helps control MS but it has unpleasant side effects as well.

MS sufferers who went to the pharmacy of their choice to collect their supply of injections in the week following the Santa Marija weekend were informed that the medicine was out of stock as the medicine they had expires at the end of August.

Extavia is very expensive, running into thousands of euros annually. It is included in the government list of free medicines. Since it is not available on sale from local pharmacies patients are forced to do without it if government stocks are depleted or worse, non-existent.

The pharmacy at Mater Dei informed me that they had limited supplies which they keep for in-hospital patients. What is one to do in such a dire situation? Anxiety is piled on top of the other sufferings resulting from MS. Patients have to live anxious days hoping that the new batch arrives on time.

Although it is first and foremost the business of a civil servant at the ministry to guarantee adequate supply, on Saturday afternoon, I was forced to send an SMS to Parliamentary Secretary for Health Chris Fearne informing him of the situation. He immediately went into action. Within two minutes he messaged back saying he will look into the matter. And within 30 minutes he sent this answer:

“Novartis (the manufacturers of Extavia) have given an extension of shelf life up to September 20. Hence patients using medicine from that batch have an additional 20-day extension. In the meantime, this week we shall be receiving new stock as well – we will have some six months’ stock.”

I appreciate the alacrity of the parliamentary secretary and publicly thank him for taking the trouble to immediately investigate the matter even though it was Saturday afternoon. This is a clear example of how government can be of service.

Nevertheless, the issue raises serious concern.

When medicines are out of stock, politicians are held to account. This is right and fitting but insufficient. Even civil servants who are responsible for the management of the system should be held accountable. The buck may stop with the politicians but it starts and should stay for most of the way with the civil servants.

Is the situation the result of an inefficient system or inefficient operators? Or is it the fault of the importer who perhaps failed to bring the medicine on time? Are there payment issues? What kind of accountability are civil servants and importers asked to shoulder?

These questions require a public answer.

It is absolutely unacceptable and disgusting that patients are being asked to inject themselves with medicine marked as ‘expired’. This should simply not be allowed, especially when this is the result of gross incompetence. The ‘price’ should be paid by the incompetent, and not by MS sufferers.

Most people refuse to buy a packet of pasta that is expired even though manufacturers say you can safely eat it after the ‘use by’ date and offer discounts to entice people to buy it. Why should people with a severe disability be expected to adopt sloppier standards?

When medicines are out of stock politicians are held to account. This is right and fitting but insufficient

In the past seven years there have been several near misses but the injections always arrived on time. This is the first time MS patients in Malta have had to inject themselves with medicine after its original ‘use by date’ expired.

Novartis says this is fine. Novartis is serious firm that should be trusted, many would say. But on the other hand didn’t everyone say the same thing about many firms in the financial sector? We all paid an enormously high price when we discovered that corporate business is not to be trusted. I wholeheartedly hope the Novartis suits are made of different fabric.

What would the CEO of Novartis or the local agent or the civil servant or politician responsible for the department do if they are in the unhappy situation that a relative suffers from MS (an experience which quite naturally I pray they would never go through) is asked to inject him/herself with medicine past its ‘use by date’? Would they not try to get new stock for their loved ones?

Local MS sufferers do not have that luxury. I asked whether I could buy a month’s supply for a relative but was told this is not available on the market.

I do not begrudge Health Minister Konrad Mizzi the pleasure of throwing ice buckets over the Prime Minister. He can do that to his heart’s content. I also know that the problems regarding medicine procurement are inherited ones. But the buck now stops with him and he is expected to see to it that MS and others suffering from serious conditions do not have to anxiously wait for their medicine in similar fashion that the Maltese waited for the Santa Marija Convoy so many decades ago.

joseph.borg@um.edu.mt