Christa Fox wants her son Kory to have the same chance to fight multiple sclerosis (MS) as is available to people in several other provinces.
The North Delta resident and licensed practical nurse (LPN) is trying hard to come up with funding for Kory to be able to take Lemtrada, a newer drug recommended by his neurologist. However, thus far the B.C. government is not funding treatments of the drug, even though several other provinces (Ontario, Saskatchewan and Manitoba) will pay for it for their residents through provincial pharmacare programs. In B.C., the drug is still being evaluated for inclusion in PharmaCare.
Kory, 19, was diagnosed with MS in 2014. Even though his mother and stepfather (her ex-husband) have drug benefit plans through their workplaces, neither plan will cover the drug treatment either.
Christa, Kory and his siblings aren’t accepting that rejection. They have started a GoFundMe page to cover the estimated $60,000 cost of the drug treatment. As of Aug. 29, the page had raised $6,600.
“If he gets this treatment, there’s an 80 to 90 per cent chance he will be symptom free for the rest of his life (remission forever). If I cannot make my goal, I will donate what I raise to the MS Society or use it towards treatment of another drug,” Christa writes on the GoFundMe page. “This is very hard for me to ask for help, but I must put my pride aside to at least try.”
Lemtrada is a new drug which that became available in Canada in 2014. It is a monoclonal antibody (a protein) which works on the immune system. Neurologist Dr. Anthony Traboulsee, who is treating Kory and is also associate professor of neurology at UBC and medical director of the MS clinic at UBC Hospital, has recommended the treatment for Kory. He believes it will repair the myelin in his spinal cord and brain and will have a positive effect far beyond the treatment cycle.
“The goal is to slow down or stop the MS from getting worse,” Christa says.
If Kory’s family can find the funds for the treatment, he would receive the drug for five consecutive days. It would then continue to work in his body for a year. At that time, he would receive three more treatments on consecutive days.
Studies show this course of treatment has the ability to improve the lives of a majority of relapsing-remitting multiple sclerosis (RRMS) patients.
“He may be covered in the next year (if the B.C. government approves the drug), but I don’t want to wait,” Christa says. “I’m desperate for him to get this.”
Kory says his left side went numb and he lost all ability to stand when he was first attacked by MS in 2012. It took two more years for the disease to be diagnosed. He has been in remission recently, with no significant attacks, but he does need treatment to keep the disease from progressing. He has lesions in his nervous system, but treatments with the drug show signs of the brain having a chance to repair itself.
He still needs to complete two courses to graduate from high school, and he is hoping to start a course to work on income tax management.
Kory has also worked as a landscaper, and says being outside in good weather seems to help him. Many MS patients need to get significant
amounts of Vitamin D, which naturally occurs through sunlight, as Vitamin D deficiencies have been linked to MS.
“The more Vitamin D I have, the better I feel,” he says.
His sister Kayla, 23, is also an LPN and plans to become a registered nurse. She works directly with many MS patients. She has come up with a number of initiatives to raise funds for her brother’s treatment, including making and selling jam and selling bracelets. This has raised over $500 so far.
Another fundraiser is also planned through WTTU Taekwondo Academy in Surrey. Kory is a former student of Scott Karpiuk, who operates the academy. A kick-a-thon is planned to raise more funds for the drug treatment. A date has yet to be set.
The Fox family has raised funds for the MS Society in the past, and is now working hard to raise funds for Kory’s treatment. Christa says she hopes that Manulife, one of the group health insurers, may reconsider its decision not to cover the treatment if the family can raise some of the cost.
No matter what, she refuses to give up. She wants her son to get as healthy as possible.
The GoFundMe page can be found at gofundme.com/2axkgx3w.
General MS information:
• 100,000 Canadians have MS, and Canada has the highest rate of MS in the world.
• It is the most common neurological disease affecting young adults in Canada.
• Most people are diagnosed with relapsing MS in the 20s and 30s.
• MS affects more women than men.