Espanola Woman Raising $750,000 For A Drug For Her Cousin

An Espanola woman says a drug is available to help people with a rare neuromuscular condition called Spinal Muscular Atrophy, but only if they are under 12 years of age.
Teri Lacey of Espanola is trying to raise three quarters of a million dollars for a one year supply of the drug called Spinraza for her cousin, Tori.
Teri says in June 2017, Health Canada approved the treatment, but the Ontario government, nor the pharmaceutical giant, Biogen, will cover the cost for her cousin’s treatment because she is considered too weak and too old.
The drug is available in Ontario, but only funded for those under the age of 12, since that was the test group for the clinical trials. Teri says Algoma-Manitoulin-Kapuskasing MP, Carol Hughes, says the family should also try to push for clinical trials for older individuals, so Tori could become part of the test group, but it is not known if any company will be undertaking those trials.
Teri adds she finds it quite ironic that in a country that professes it provides free ‘universal’ health care, that Ontario doesn’t, but Quebec does offer the drug. The family has talked about moving Tori to Quebec. If she resides there for six months, she will qualify for provincial coverage. Teri adds her aunt and uncle have also re-mortgaged their home and have several investment properties up for sale to try and raise the thousands of dollars needed for the drug.
In the meantime, Teri says a Go Fund Me has been set up to ask the public for their help. She says time is of the essence since Tori is now wheelchair bound and has very limited mobility.
Photos provided by Teri and Tori Lacey.

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