–With notes from Tanis Nielson-Rhoades
Today treatment for Landen’s SJIA could not happen.
Landen is a six year old boy from Sooke dealing with SJIA, an incredibly rare type of juvenile (childhood) idiopathic (of unknown origins) arthritis. It’s also called Still’s disease. (See more on Landen’s case in the Related section below.)
His mother, Jillian Lanthier, has been advocating for her son. She is asking the BC government to cover the cost of Canakinumab, a drug that costs $19,000 for a single dose, once a month. She has been refused multiple times. Canakinumab is the medication the doctors’ have prescribed, and the cheaper options have had little success.
At today’s hospital visit, six-year Landen endured four collapsed veins, as they just wouldn’t hold the intravenous (IV) injections. Sedation also did not work. Landen is out of options.
There are different ways to donate.
- Accounts have been set up at the Sooke and Langford bottle depots; just say you want it credited to Landen.
- There is a trust account that can be donated too at all Coast Capital branches, under the name “Landen Alexa.”
- The community is also planning a day to come together with fun, activities and a silent auction on March 3, 2018. More details to come.
A GoFundMe campaign is also running.
- Where BC Pharmacare fails, community of Sooke delivers: Over $23,000 raised for Landen
- CHEK News: Supporters say Sooke boy is being treated unfairly (Video)
- Aldergrove girl with Systemic Juvenile Idiopathic Arthritis (SJIA) to receive Pharmacare coverage for Canakinumab
- Community rallies for local Sooke boy: Three other ways to
- Benefit concert “Remembering John” raises funds for Landen
- Collapsed veins means Landen could not get his treatment today
- Video: Mother of sick child confronts BC Minister of Health
- Premier stands by minister’s decision to deny Landen quality of life medication
- Open Letter: Mom requests reason for Pharmacare’s decision to deny a child effective pain meds
- A mother’s fight for her son’s pain relief continues, no end in sight
- OPEN LETTER #2: Horgan, Landen is back in the hospital. We haven’t heard from you yet.
- Video: Landen’s journey so far, and his fight for BC PharmaCare funding for canakinumab
- GoFundMe: Landen’s fight for canakinumab
- LETTER Sooke mom pleads for Horgan to hear: her child requires meds they can’t afford and Pharmacare doesn’t cover