Fabry's Disease

Fabry's Disease is a genetic disorder, a single missing gene, passed on through the maternal line. It is extremely rare. In Canada it affects only descendants of a single woman from Tancook Island in Mahone Bay, NS.

Accordingly, there are several hundred people suffering from it, almost all of them in South Shore Nova Scotia around that Bay or nearby. The disease has long term effects that manifest not unlike chronic fatigue - since the missing gene clears out toxins from the cells.

Two treatments are now available, after extensive testing on volunteers (from the South Shore). However, as the clinical trial period ends, so does their coverage.

As the disorder is genetic, a science-based treatment is the only possible treatment. There are no alternatives. The drugs are expensive and cannot be covered by anyone who is not extremely and independently wealthy. In Canada it is only governments in a position to pay for the therapy.

Despite the fact that the NS PC Premier of Nova Scotia, John Hamm, received over $800M from the Atlantic Accord, as of 2005-04, his government had made no promises to cover the $20M/year cost of coverage, and, had not broached the issue with the federal government to cover the extremely localized misfortune of these people.

This is expected to be an issue in any Nova Scotia provincial election, 2005, as the clinical coverage has only recently run out.