It’s been a pretty busy month since I last posted. Since my last post, I did some filming for a new medical course that has been in development at the University of British Columbia called the Certificate in Collaborative Practice for Health Professionals. This new course is designed to help health care professionals strengthen communication and collaboration skills in order to enhance patient-centred care. I have been serving on an advisory committee, along with several of my fellow Health Mentors over the last year. The work has been both challenging and interesting. What I’ve loved best about it is that I know that the work we are doing is going to have a very positive impact on how health care is delivered in our province. It’s been a real privilege to be able to contribute to this program in such a meaningful way. Our work is now shifting to ethics, which I am sure will be equally interesting. The video component of the course is currently in editing and I can’t wait to see the final cut!
Last week was UBC’s annual Allies in Health Community & Patient Fair. I spoke on a panel about my experiences in the health care system which included what it;s been like getting a diagnosis and treatment for a chronic illness and the difficulties I’ve faced. The Canadian MS Society, (which has taken Canadian NMO and ADEM patients under their wing) had a booth set up and was handing out information on MS and NMO. I also had a stack of pamphlets from Guthy-Jackson that I handed out to those who attended the panel. This is the second year I’ve spoken on a panel at this event and it’s always a wonderful opportunity to raise awareness for NMO.
On Saturday, November 1st, I attended the UBC NMO Patient Information Day. There were a number of topics covered, including Patient Experiences, Pediatric NMO, Sexual Health, Pain Symptom Management, Current & Future Disease Modification Therapies for NMO, an update on the NMO Walk/Run and an update from the MS Society. As you can see, the day was jam packed! I think there were about 100 people in attendance.
The most exciting thing to come out of the day was that in Canada we are, as of THIS WEEK able to finally join the CIRCLES* Studies. The ability for NMO patients to give blood for the bio-repository has been in place for quite some time in the US, but because Canada has different rules and ethics around a study like this, Canadian NMO patients have had to wait while all the red tape was dealt with. Well, that wait is over- UBC will begin enrolling interested patients in the study this week!
The other really important thing that was discussed was a petition that has been started, urging the provincial government to approve and fund Rituximab for NMO patients. Currently, Canadian NMO patients can sometimes get compassionate coverage of about $3000 towards the cost of the drug, but the remaining balance (which is substantial) must come from the patient or via third party insurance. The cost is prohibitive for most patients. Our local NMO clinic is arranging to have this petition available online and to extend the request to include that the federal government approve coverage Canada-wide. As soon as I hear that the online petition is available, I will be sure to post the link here.
For those of you who are interested, I managed to live tweet from the conference and you can review those tweets on Twitter, by searching the hashtag #UBCNMOday . I know there were several people from the NMO community following along and I was pleased to be able to help include you in the day’s events in this way. Technology is so wonderful for helping our community stay connected!
The next big thing coming up for me is the Grey Cup. For those of you in the US, who might not be familiar, it’s kind of like the Super Bowl, minus the crazy commercials. Vancouver is hosting this year. Two years ago, we hosted the 99th Grey Cup and I had such a good time volunteering, I decided to do it again. I’ll be reprising my role as a VIP Transportation Dispatcher and running a fleet of about 30 cars for the 6 days of festivities. I can’t wait! Here’s hoping our Lions get through the semi-finals!
*The Collaborative International Research in Clinical and Longitudinal Experience for Neuromyelitis Optica (NMO) Studies. This work is funded by the Guthy-Jackson Charitable Foundation for NMO research.