Dear John Horgan,
I am a single mom of 4, college student, and I live in Sooke BC – your hometown!
I have never asked for help, and truthfully never needed it like I do now, and still I hate this.
Please let me explain our devastating situation we have been faced with (I’ll do my best to keep it short).
I have a sweet little boy, his name is Landen and he is almost 7. He attends (when he can) Sooke Elementary.
This past spring, Landen rolled his ankle at a fundraising school event. A quick trip to emerg, we were told nothing serious, just a sprained ankle. If it didn’t improve; we should return.
I’ve been a mom for 13 years. A sprained ankle was minor to me. We carried on our usual life and some Tylenol “fixed him” … or so I thought…..
I’d love to tell you that it was weeks, or months and nothing came from that “sprained ankle” … but unfortunately it was only three days before our entire world shattered faster then I could imagine. The rug was pulled from underneath us in a blink of an eye.
Landen was rushed to Victoria General Hospital on June 1 2017 with:
- A fever of 103, body tremors
- Unable to move limbs.
- Unable to walk.
- Unknown full body rash
He was admitted to acute emerg right away, and for the following 10 days—we had no answers. None. Zero. Zilch.
They talked about leukaemia, lymphoma, toxic blood, blood infection, the list goes in. I look back and don’t know how we survived those days. They were desperate for answers like I was.
I met with every specialist I could have imagined, but still no answers. Landen’s chart was also sent to BCCH for consult.
I am certain Landen went thru millions of dollars in testing for those 10 days, and still, the doctors had no answers. I am forever grateful for those team of doctors, forever thankful. VGH has been amazing, as well as BCCH.
Watching my son suffer, be immobile and require the use of a paediatric walker was nothing short of devastating.
This was the boy, who could race a BMX faster then his dad, and in a blink of an eye, lost all capability to do so, let alone walk or use the washroom.
Landen was diagnosed June 14th 2017 with Systemic Juvenile Idiopathic Arthritis (sJIA)
Landen now requires a medication called Canakinumab.
- Cost per MONTH: $19,000
- Cost per YEAR $228,000
PharmaCare has denied my child who is suffering this medication.
PharmaCare’s special authority has further denied my son this medication thru his specialist.
We HAVE tried the “cheaper” drug since June 2017, and are at the point where it’s no longer working effectively; there is NO other option that is cheaper. Nothing.
We are in hospital several times per month. Our life is now planned around the hospital schedule. I wish that for nobody, let alone a child, who I feel was robbed by this disease.
I understand most people assume “sore joints” when told “Arthritis.” I was one of those people. I truly thought “what’s the big deal.”
I learnt the hard way. The very hard, unimaginable way.
It’s a lifelong critical illness. Less then six months ago, a little boy passed away from sJIA at BC Children’s hospital.
Premier Horgan, this disease attacks itself, and is wreaking havoc on my son.
It has a fatal side diagnosis called MAS. Macrophaga Activation Syndrome. That word in itself, is my next largest fear as it could kill my son Landen.
Mr Horgan, this disease is life threatening, and very rare.
Mr Horgan, There is NO cure.
Remission is possible, but no medical professional can tell us “if or when.”
Mr Horgan, this disease leaves my child with no immune system, making it potentially fatal from something as simple as a cold.
ANY illness Landen catches, he is admitted immediately on route to the hospital from Sooke.
I have never in my life written any sort of letter like this, but I am reaching a new level of desperation.
I simply don’t have $19,000 per month for medication, but please tell me; what Canadian does?
I also, never imagined in Canada I would be fighting for a drug this expensive.
And Premier Horgan, To make matters 100% worse, the packaging of this medication makes only HALF a useable dosage for Landen, and requires the other HALF, to be thrown in the garbage because the dose is simply too much. (I wish I was joking) It seems so cruel, and fraudulent. But you read correctly.
- 150mg Vial.
- Landen only requires 75mg vial.
I hope this letter reaches you, as I continue to write letters, reach out to the media, the press, social media, friends, strangers, & Facebook, simply out of desperation to see my sons life stabilize.
I am nearly begging, please help.
Sincerely, a heartbroken mother.
BC Government Responds
Sooke PocketNews contacted the Ministry of Health and requested a statement. We received the following:
“Arthritis is a complicated disease with many faces, with over 100 types, including juvenile idiopathic arthritis. The Ministry of Health has just been made aware of this case and will be reaching out to the family to look into the case further.”
Additional information from a spokesperson at CassieAndFriends.com:
- JIA affects every 3 in 1000 children in bC with 10-20% having SJIA
- SJIA affects not only a child’s joints, but also their major organs, including the liver, lungs, skin, eyes and heart.
- While SJIA is active, inflammation can cause permanent severe damage to a child’s joints and organs.
- Early and aggressive treatment of SJIA means reduced disease symptoms allowing kids to regain their quality of life and discontinue other medications, i.e. large doses of steroids, which have terrible side effects and are not meant for long-term use
- Canakinumab targets the specific immune dysfunction that causes the severe symptoms of SJIA.
- Relatively few children in BC require canakinumab as most respond well to other treatments
- Canakinumab is publicly funded in other Canadian provinces/territories but not BC
- Coverage for this medication through extended health insurance is variable, and therefore sets up a situation in BC that disadvantages children whose families do not have extended insurance.
CassieAndFriends.com is lobbying the BC Government to drastically improve the outlook of children with SJIA by allowing reimbursement coverage – at least on a case-by-case basis – for canakinumab for the small number of children who need it. We want to work with the government and our clinical experts to design criteria for BC Pharmacare reimbursement coverage for the children who need it.