Thank you, Mr. Speaker. Mr. Speaker, what happens when a constituent finds him or herself with a disease that only one in a million people have? And then finds that disease is not on this government's antiquated list of specified disease conditions?
Mr. Speaker, I will speak about chronic recurrent multifocal osteomyelitis, also referred as a CRMO. It is an issue that I promised a constituent I would bring forward on his behalf.
CRMO is a disease that affects mostly children and adolescents but can affect any age. It results in inflammation in around the bones with symptoms of continuous pain, inflammation, abnormal bone growth, bone deformity, bone fractures, joint swelling, and fever. It affects the person to the point that he or she is unable to work or participate in activities many of us take for granted.
Mr. Speaker, of all of the diseases present in the world today, we only have 50 shown on our list of specified disease conditions. Again, what happens when you have a rare disease and that disease is not on this government's list of specified disease conditions?
The answer is simple.
If you have private health insurance, treatment and medication may be covered. If you're relying on this government's healthcare system for support, you are in fact on your own.
Mr. Speaker, the federal government has tasked this government with the responsibility and financial resources to provide healthcare to all residents of the Northwest Territories. What that means is we must do all we can to ensure residents have access to appropriate healthcare whether or not they can afford it. And in this instance, whether or not it is a disease that is not on this list of specified disease conditions.
Mr. Speaker, this government's Extended Health Benefits Policy, 49.07, states that government is committed to the realization and maintenance of health and wellbeing of the Northwest Territories residents. It also states that nothing in this policy shall in any way be construed to limit the prerogative of the Executive Council to make decisions or take action respecting extended health benefits outside the provisions of this policy.
Mr. Speaker, the second quote is particularly important as it is apparent the drafters of this policy anticipated that there would be instances where gaps would exist thus provided the Executive Council with the authority to address those gaps. As such, CRMO not being listed is an instance where a gap does exist. Mr. Speaker, I seek unanimous consent to conclude my statement.
Unanimous consent granted
Thank you, Mr. Speaker. Mr. Speaker, fixing an outdated policy is our responsibility. Providing healthcare is our responsibility. However, this government feels it would set a precedent and open the floodgate to others in similar circumstances. Making those debatable decisions in favour of our constituents are why we are here.
Mr. Speaker, the cost of helping this young man is approximately $20,000 per year. This will not cure the disease, but it would provide my constituent with quality of life, something we all take for granted.
Although the initial request on behalf of my constituent was denied, I would ask the Minister of Health to do the right thing and reverse her decision to provide the support that will improve this young man's quality of life, or at least place the matter before the Executive Council for their consideration. Thank you, Mr. Speaker.
Thank you, Member for Hay River South. Members' statements. Member for Deh Cho.
