A Port Elgin family is still fighting for the drugs they need to keep their daughter alive.
The Little family rely on off-market medicine to treat a rare condition affecting their 8-year-old daughter Olivia.
Olivia has cystinosis, a deadly genetic disease that destroys her kidneys.
Only about 75 kids in the country are affected by cystinosis.
Olivia currently uses a drug called CYSTAGON to treat the condition, which has been available in Canada for the past 27 years through the Special Access Programme (SAP).
SAP allows Canadians with rare conditions to apply for access to drug treatments not available on the Canadian market.
Right now, a CYSTAGON prescription is $5,000 annually, and that cost is covered.
However, a new drug called PROCYSBI may eliminate Olivia's access to CYSTAGON.
The drugs are similar, but the problem is that PROCYSBI may cost 60 times more than CYSTAGON.
Horizon Pharma owns PROCYSBI and want to set the price at more than $300,000 per year.
Little tells us that PROCYSBI may be a benefit to others, and isn't boycotting the product, but says that the price is ridiculous and that ''our children shouldn't be victims to their diseases''.
Little says that the company that used to supply the family with CYSTAGON has sold their international rights to a different company, so she hopes that means this new company will bring the product to Canada.
She says even if CYSTAGON does come to Canada, it takes two years for new drugs to hit the market after testing and licensing is done.
CYSTAGON has been available through SAP in Canada for 27 years.
Little says that she can't believe the amount of focus that is given to issues like the sex-ed curriculum, or Toronto City Council, when people's kids are literally dying because they can't afford or access the drugs they need to survive.
Huron Bruce MP Ben Lobb began meeting with Health Canada officials and advocacy groups late last week. He says talks continue to open up drug access to Canadians who need it.
Lobb says that if a drug can save someone's life, they should have access to it. He continues to fight in support of marginalized groups of people and their families who are directly impacted by rare diseases.
The Liv-A-Little Foundation raises money to help with Olivia's treatment.
Today, Health Committee unanimously passed a motion to study barriers to treatments & drugs, including the Special Access Program, for CDNs with Rare Diseases. Thank you @livalittlefound for all your work advocating for Olivia & CDNs facing similar challenges.— Ben Lobb (@BenLobbMP) April 18, 2018