Dear Friends, Thank you again for your support and for helping us to reach almost 20,000 signatures on this petition! We hope you will continue writing your MLA's and the Ministry of Health to express your desire to see a speedy, reasonable and sustainable solution to canakinumab access for the small number of BC kids who are suffering. Two activities/updates of note over the last two days: 1. Minister of Health, Adrian Dix, responded directly to a reporter's question about Landen Alex on Vancouver Island. He said, ""My heart goes out and everyone's heart goes out to anybody that's suffering and that's why we have a physician-led process to deal with these issues...And that's what is happening in this case. It's not the Minister of Health deciding how a patient should be treated because that doesn't make sense we have a process." Dix's statement is good news for kids like Landen and Jaylene, but the goods news is not coming quickly enough. We are encouraged there's a process in place but only if that process includes the review and voice of a pediatric rheumatologist. We'd also like to meet with government to review by what criteria kids are being evaluated and how quickly these requests are being turned around. 2. Today, there was a rally staged by concerned citizens in Sooke, BC. Below is a message from Cassie and Friends Society's Executive Director in response: "Cassie and Friends is a leading organization for kids and families affected by Juvenile Arthritis and other rheumatic diseases in BC and Canada. We are responding to the rally staged at Premier John Horgan's office today on Monday, January 15, 2018. We know, first-hand, the fear and frustration that these parents are feeling as they watch the devastating effects of uncontrolled arthritis take over their child's body. We launched our online petition over one year ago in an effort to ensure that an effective therapy is available for the few children with Systemic Juvenile Arthritis who may need it. We believe this small number of children deserve fair and reasonable access to the appropriate treatment. This matter is urgent as we are watching children suffer daily without access to the best medicine. We have been encouraged by government's response so far, but we will continue to watch the situation closely. We recognize that canakinumab is expensive, and are asking only for exceptional access for a very small number of children on a case-by-case basis. The government has done this in other disease settings for therapies that cost hundreds of thousands of dollars, so surely they can do the same for children with severe forms of arthritis. We remain hopeful that the government will accept our meeting request so that we can work together to develop an evidence and expert-based, sustainable solution. Ultimately, we want to see systemic change for the health of children with arthritis so that families don't have to mount petitions or stage rallies and so that these children can live happy and healthy lives." Thank you again for your support. We are determined to see the best possible outcomes for kids and our one, unified voice will make all the difference. Jennifer Wilson Executive Director Cassie and Friends Society www.cassieandfriends.ca