Dear John Horgan
It is now December 15, 2017 and I am yet to hear from you, and it’s been one week today. Seven days. 168 hours and countless sleepless nights for this single mom since his diagnosis in June of 2017.
This week has been particularly hard for Landen.
I do believe you’re my MLA of Sooke, and perhaps the politics and hype around Site C Dam are taking precedence over this, but at the end of the day, when all the dust is settled, I’m asking you to think about Landen.
Today, I again, invite you to have a glimpse into our life as I walk through these doors at VGH hospital. 3rd floor.
I refuse to let Landen down, and I refuse to Give up. That’s not who I am as a person and certainly not as a Mother of 4 children.
Landen will be sedated shortly for his IV, which in all honesty – sucks.
But you see Mr. Horgan, since diagnosis, Landen has developed a severe phobia of needles, so this is required. This is our life.
I’m not looking for pity, sympathy or sadness.
I want your help with improving Landen’s quality of life, regardless of a price tag.
We are Canadian, and we are proudly British Columbian’s.
There should be no excuse. Or is there?
When reading the paragraph above, please consider the cost of the two wonderful nurses, the treatment room, the IV team that is required, the blood lab tech and possibly the use of an anesthesiologist because Landen’s veins are a hard start For an IV. Because of this, I will also be inquiring about a PICC line, which is also an expense but every little thing counts in trying to improve my son’s life with this disease.
Please, when you read $19,000 per month for Canakinumab, factor all of the costs against our current treatment costing as I am very confident that you will find overall your fixed cost and variable costs outweigh administering Canakinumab for Landen.
Also, it is my understanding that there are less then 7 or 8 Paedeatric rheumatologists in BC who could prescribe this on a case by case basis, isn’t this correct?
I am not asking for the moon, although at this very point, while I’m in desperate need for your help for Landen i fear your lack of reaching out to me, is that I am asking for the moon.
We are in hospital today for the treatment that’s not working to it’s full affect – and unfortunately not allowing Landen to live pain free, and care free, like most 6yr olds.
Do you consider this a win for Landen?
I do not see this as a financial win for the BC government. Do you?
If you do, please factor the cost of our next hospital stay in 14 days.
IF all goes as planned that is.
And please, For one second Mr Horgan, put yourself in my family’s shoes.
- Do you have children?
- What would you do if this was your child?
- What is the ideal solution in your eyes?
I’ll forgive you if you’re simply too busy with the Site C dam issues to pick up the telephone and call me.
But Landen’s disease and our fight for Canakinumab will continue.
And my open letters will continue; I am not ashamed; however, perhaps as resident of Sooke, our MLA, our Premier, a father and a cancer survivor you should be ashamed for ignoring this serious life altering issue.
The Mother who’s losing faith in the BC Government & FairPharmacare.
SPN Addendum: A week ago, the BC Government provided the following response regarding Landen’s case:
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.”
- 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
Also, please take a minute and sign this online petition, to fund canakinumab.