Multiple Sclerosis A Heavy Burden

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Minister of Health, Donville Inniss??

With no clear indication of the number of persons living here with the debilitating disease, Multiple Sclerosis (MS), Health Minister, Donville Inniss, is suggesting that a census be undertaken.

The recommendation came during a meeting with the local MS Society, where a number of issues affecting its members were discussed with the Health Ministry.

Minister Inniss said: "We are still to be clear about the number of sufferers in Barbados. There are two neurologists in Barbados, so it shouldn’t be difficult to do an analysis of patients, and invariably all MS sufferers, at some point in time, are patients at the Queen Elizabeth Hospital (QEH). That information can be captured there."

In a paper presented at the meeting, the Society acknowledged that such a census should be conducted and should include among other things, the date of diagnosis; the type of MS; treatment recommendation; and the stage of the disease.

Mr. Inniss told the group that such information would assist his Ministry in coming to an understanding of the costs to Government. He stressed:?? "We need to know how many persons are on life altering drugs, for they may not be suitable for every MS sufferer, and how many people in Barbados right now should actually be on these.?? That would give us a gauge as to how much it would cost overall."

According to the Society’s document, Interferon drugs, referred to by the Health Minister became available from 1997, "and these have made a tremendous difference in the lives of the MS patients, who could use them.?? However, they are expensive."

In detailing the heavy burden of multiple sclerosis, members used as an example the cost of one drug – Avonex. They noted that this drug costs some $2,527.35 for a four-week supply, and $32,855.55 annually.?? They compared these figures to hospital care using steroids, a highly trained nurse and physical therapy, all of which amounted to $28,800 – a difference of about $4,055.

The Society also lamented that Barbados’ health system had not reacted "to the paradigm shift which occurred in the 1990s in the treatment of multiple sclerosis, when, for the first time, there was hope of slowing the inevitable decline in MS patients. The paper also acknowledged that: "Those who cannot use them [drugs]; and those who have the primary progressive form of MS have no treatment to date, although there are reports that a drug may soon (2011 or 2012) be released."

Some members recounted their experiences with MS, and noted that in certain cases there was a refusal by those in the medical profession here to place them on interferon drugs, and that prescriptions were sometimes not filled.

The Health Minister, in acknowledging that the drugs were costly, suggested that a means test be considered. He pointed out that it would assist the Ministry in determining, among others, who could afford to pay for the drugs; whether families/relatives could assist, and how much medical insurance would cover, in an effort to offset cost to Government.

In response to queries about the inability of the QEH pharmacy to fill some prescriptions, Minister Inniss said this was mainly related to budgetary constraints. "That’s the harsh reality. The QEH pharmaceutical budget is $13 million a year.?? That may seem like a lot, but when there are 45,000 individuals going through the QEH, of which we have about half, being admitted, that is not a lot of money at our disposal."

He gave the assurance that the Barbados Drug Service (BDS) would continue to look assiduously at sourcing medication at a cheaper rate and stressed: "Although the pharmaceutical companies here are in business to make a profit, there will come a time, when their goals will conflict with the Ministry of Health’s. We are prepared to go directly to the manufacturers and seek concessionary rates."

MS sufferers also told the Minister that in addition to their medical treatment they had a number of social needs. These, were listed as the retrofitting of bathrooms; building of ramps; intensive and prolonged physiotherapy; transportation; and appropriate diet for their medical condition.????

Multiple Sclerosis is a disease of the central nervous system for which despite the advances over the last 12 years, there is yet no cure.?? MS sufferers experience, among other ailments vision loss, numbness, incoordination and balance problems, tingling sensations, slurred speech, ataxia, difficulty in walking, atrophy, loss of balance, giddiness, fatigue, incontinence and sexual dysfunction.

The MS Society currently has 50 members, but according to the paper presented to the Health Minister, it is estimated that "there may be about 100 additional patients based on inquiries and reports…received."

jgill@barbados.gov.bb

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