New drugs give real hope to MS sufferers

Multiple sclerosis affects up to 7,000 people in Ireland, many of whom may benefit from new treatments, writes RONAN MCGREEVY

The case of Marie Fleming has focused attention on the condition known as multiple sclerosis (MS).

Ms Fleming (59) is in the advanced stages of the illness and, in court appearances, has given harrowing testimony about the way the disease has devastated her life. Ms Fleming’s desire to be allowed to die by assisted suicide is now the subject of a Supreme Court appeal which will have major implications for euthanasia in Ireland.

When the public thinks of irreversible, chronic conditions that can lead to paralysis, MS is often an illness that comes to mind, but the picture is complicated.

MS is an autoimmune condition where the immune system interacts with the central nervous system. The system works by transmitting electrical signals around the body through axons which is like the copper wiring of a cable. Surrounding that is the insulation called myelin.

If the myelin gets damaged, the nerve signals round the body get damaged. In MS, for reasons that are not clear, the immune system attacks the central nervous system thinking that some of the protein in the myelin are foreign bodies.

“That happens in waves and this results in the neurological disability because the nerve cannot transmit the electrical signal,” explained Prof Orla Hardiman, a consultant neurologist at Beaumont Hospital and the leading authority on the disease in Ireland.

The disease is common in Ireland affecting between 5,000 and 7,000 people, higher than the European average of one in 1,000.

The reasons countries such as Ireland and Scotland have such high rates is not certain, but it may be genetic and/or related to the absence of sunlight and the resulting lack of Vitamin D.

A recent study found significant differences in rates of MS between Donegal and Wexford.

Severity of condition

Prof Hardiman said Ms Fleming would be “quite unusual” in terms of the severity of her condition. She said roughly a third of people with MS have little or no disability, another third have moderate disability and a smaller proportion of the rest have severe disability.

She believes those figures may well be dated as new treatments have come thick and fast in recent years leading to real hope for sufferers.

The conventional treatment is steroids which dampen down the immune system but can also lead to side effects including osteoporosis, diabetes and obesity. They also do not treat the disease itself or halt its progression.

When Prof Hardiman started out in the 1980s there was no disease-modifying treatment for MS, but such treatments have come onstream with increasing rapidity in recent years.

Beta-interferon and Glatiramer acetate are effective in reducing the number of relapses for those with the relapsing-remitting form of the disease, the most common type.

In recent years, a number of other drugs have come on the market. Tysabri, the great hope of the Irish-based pharmaceutical company Elan, was even more effective. Unfortunately, it also led to a condition called PML, a viral infection in the brain. The number of people getting this drug in Ireland has been capped because of the costs.

The latest big development is Gilenya, which is taken in tablet form. It reduces the number of white cells that make the autoimmune response. There are minor side effects.

Price negotiation

It was originally not made available by the Health Service Executive but after price negotiation with the company, it was agreed and it is available on the high-tech scheme.

According to MS sufferer Grainne Kelly, Gilenya has made a big difference to her. She was diagnosed with MS in August 1998 after finding that her left leg was dragging and her sight was blurring. At the time she had three children aged six, nine and 10 and was active in the local community.

Her mother also had MS and she had to use a wheelchair.

For 12½ years Ms Kelly received an injection once a week, but that resulted in severe side effects including flu-like symptoms and depression. She has been on Gilenya since March last year. Her last relapse was in February last year before she started taking the drug. Normally, she would have two to three relapses in a given year.

“My life is not restricted except that I cannot work. I worked in shoe shops for years. When I had a relapse I would be out for 12 weeks at a time,” she said.

“I’m physically very well, but cognitively I can be quite challenged with memory. There are other people with MS who are able to work. I never look too far into the future, but I’m very happy with this drug.”

Ms Kelly’s condition is a long way removed from that of Marie Fleming and more typical of the kinds of conditions encountered by MS sufferers.

Another drug which is currently part of a clinical trial in Ireland is Daclizumab made by Abbvie, an offshoot of Abbott. It is injected under the skin and it interferes with the growth of white cells.

BG-12, developed by Biogen, is another tablet drug showing great promise. It has reduced episodes by 50 per cent. The drug also significantly reduced the frequency of new brain lesions often associated with these attacks.

Laquinimod and Teriflunomide act in a similar way while Alentzumab, a drug developed for leukaemia, is now being used as a once-a-year injection. It is an antibody against white cells that can cause the autoimmune response though it can lead to an overactive thyroid.

The end result is that doctors have been able to help patients with the relapsing-remitting form of MS which is the most common form.

Progressive stages

That is the good news, but treatments for the primary progressive and secondary progressive stages of the disease have proved to be elusive.

Primary progressive MS is when patients develop MS without going through the relapsing phases while secondary progressive MS usually occurs 10-15 years after diagnosis of relapsing-remitting MS.

“There’s been a huge dividend from the research that has been going on,” said Prof Hardiman. “The big challenge now will be to nail down the primary and secondary progressive form of MS.

“We want a drug that will turn off the neurodegeneration, but that’s the Holy Grail for all kinds of diseases.

“If we could do that, we could be well on the way to treating some of the biggest medical challenges of the 21st century.”