January 16, 2007 mcfadyena

Still No ERT Start Date

Just frustrated waiting over here in Vancouver. Bill Mercer, the man who is helping us get Trey’s ERT from the Pharmaceutical Services Division of the Ministry of Health, is being very helpful and emailing me and talking to people when he says he’s going to. Right now I’m a little more frustrated with the medical side of things.
When we first started looking into getting a rare drug for Trey in Canada, we found out that before drugs can be brought into the country which are not federally approved (like Elaprase), Health Canada has to approve them. This process is through the Special Access Program (SAP). SAP is rarely denied because if anything goes wrong, the physician is liable, not Health Canada (It must be Trey’s physician who applies for SAP. Not the parents, not the politicians, not the government workers). SAP is separate from funding.
In order for Trey to get ERT, we knew he needed SAP and funding. All the doctors and politicians and Shire representatives and activists we talked to said SAP would not be the issue, funding would. While we were also actively trying to get the funding issue resolved, we asked our doctors repeatedly to apply for SAP, so that when funding was approved, we could move forward without having to wait for SAP to be granted. SAP usually takes 2-3 weeks to be granted. I was told, also repeatedly, that SAP was not the issue, that it could be granted in a few days, when necessary, and that we should worry about funding instead.
So guess what? SAP is holding us up because it has not been applied for. Bill Mercer told me late last week. Yeah. Frustrated. SAP was applied for early yesterday, so I have no idea how long the wait is now.
On the topic of fundraising, we have begun to organize our first official fundraisers. On Saturday, May 5, 2007 is “Tacos for Trey.” We will celebrate Cinco de Mayo with tacos and margaritas, mariachi music, pinatas, a raffle, and who knows what else. We will also be selling t-shirts for Trey (they’re in the works as we speak). Soon I will update with more info.
The other fundraiser in the works is the “Dad’s for MPS II Calendar.” It’s going to be awesome. All proceeds from all our fundraising efforts will go into the MPS II Fund within the MPS Society of Canada (all the money in the fund will go towards MPS II or related research).
I met with a charity lawyer last week, so the fund is also getting set up as we speak. If you want to donate, you can do so by cash, cheque, credit card, and soon, online donations through the MPS Society’s website (if you want to ensure that the donation goes into the MPS II Fund, make sure that it’s written on the cheque, or that you tell Kirsten that’s where you want the money to go etc.).
For the MPS Society’s address or phone number, to donate online, or for more information, please check see their website: www.mpssociety.ca. Love to you all and I hope your New Year’s are off to a good start. We’re hoping for a better 2007 than 2006!? Thank you for your continued love and support. We are so grateful and thankful for it.


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