All 11-year-old Jaylene Prime really wanted for Christmas was more signatures on a petition she hopes will force PharmaCare coverage for a drug that will remove or at least minimize her chronic pain.
The Aldergrove youngster lives with a rare and painful form of juvenile arthritis that requires daily injections to keep her arthritis symptoms in control.
She dreads it every single day of her life, describing them as fire under her skin.
The family, in fact, teams up every single day at injection time to help distract Jaylene from the pain.
Her younger and older sisters (Claire and Anika) often sing, dance, perform skits, tell jokes, or just hold her hand and talk to her in efforts to help her get through one more treatment.
Even though they try to freeze the area, Mom said, Jaylene is always left screaming and crying because of the unbearable pain caused when the needle is injected into her arm or abdomen.
Now, there’s a drug called canakinumab on the market that only requires a shot once a month, and it is reportedly showing great results for the kids suffering with this often disabling disease, said Charlene Prime, Jaylene’s mom and a vocal advocate for the funding of the drug.
“No child should have to go through this,” Mom added, noting that Jaylene is one of only five kids in the province she knows of living with this severe form of the arthritis and in need of this expensive drug. It’s not something required by every child living with arthritis, Mom explained.
“At the price tag of $20,000 monthly, PharmaCare is not covering the drug for these children and they are, therefore, enduring immense pain,” Charlene said.
While it would obviously be a large upfront cost to the medical system, she said it would ultimately save the health care to ensure these kids are receiving this treatment.
All the other kids like Jaylene, who are on the drug now, are showing considerable improvements. They’ve been taken off all or most other drugs (at present Jaylene is taking 12 different medications a day), and most of the recipients have seen their disease go into complete hibernation, Charlene explained.
“If you base it on what we’ve seen of this drug… she could regain her childhood again,” Mom added. “How can I not do everything in my power to make that possible, not just for my own child, but for the others.”
That’s why Charlene is working with a B.C. charity called Cassie+Friends to lobby the government, to encourage a letter-writing campaign, and to collect signatures on an online petition demanding the province take action immediately.
The petition was started about a year ago, and they’ve gathered more than 7,000 signatures online, as well as hundreds more on paper pledge forms.
But so many more signatures are needed in an effort to have the NDP government give funding approval for the drug, Charlene said.
She is anxious to bring education and awareness to the disease and what she calls a shortfall in the medical system.
If it was a child with cancer or another better-recognized life-threatening disease, that child would have access to and full coverage for all the “vital medication” necessary, Mom emphasized.
But since arthritis and other rheumatic diseases are not well recognized and not understood as the life-threatening disease it is, these kids are being left to suffer unnecessarily.
“Come on, we can’t make this one drug available to them?” Mom queried.
Despite all attempts to reach the health ministry and others in government, Charlene said neither she nor Cassie + Friends have ever heard anything back.
Owning their own business and only having basic medical coverage, the Prime family – like the other five families – are not in a position to afford the drug.
“It’s just too expensive… this shouldn’t be allowed,” Mom added.
Doctors who specialize in this field are recommending the drug. Charlene said she’s lost as to why, then, the government won’t recognize it, and would rather leave these children suffering.”
Diagnosed three years ago
Jaylene is a Grade 6 student at Peterson Road Elementary.
She was diagnosed with Systemic Juvenile Arthritis on Jan. 8, 2015, and was in and out of BC Children’s Hospital (both stay overs and outpatient visits) 57 times in that first year.
The hospital visits have slowed up a bit, but she was back in hospital again a week before Christmas with what Mom described as a flare up.
Because it’s systemic, it attacks her liver, heart, and skin. Two or three times a year, for instance, she ends up with a rash all over her body that burns and itches. The rash can only be mitigated slightly by cold baths and weeks (sometimes months) of additional drugs.
The little girl lives with chronic pain and constant tiredness. She also lives with frequent emotional distress, Mom explained.
While she loved being physically active, that’s no longer as possible for her. She longs to be like most kids, to ride her bike, to go hiking with her family, and to play baseball again.
“These are the kinds of things so many of us take for granted,” Charlene said.
Thanksfully, Jaylene has discovered some enjoyable hobbies that are more compatible with her physical limitation, such as music (she’s learning the guitar, playing saxophone at school, and singing with the Langley Children’s Choir), but she knows she’s missing out on much more.
“She’s being deprived of her childhood,” Charlene said. “None of these kids have a childhood. It’s not fair.”
As a mother, she added, “I want her to have a good quality of life… I’m doing this so my child can live a normal childhood.”
Jaylene just turned 11 in November, and she’s already lived through more pain and suffering than any adult eight times her age.
“I don’t know how she does it. I don’t know if I could do it,” Mom said.
“I just want to help my daughter,” Charlene said. This medication is “vitally important in the treatment of this severe form of childhood arthritis.”
Is there more to this story?
Charlene’s account of Jaylene’s diagnosis:
The Christmas season was heartbreaking. Jaylene was unable to lift her head off her pillow and was unable to move.
Her dad was carrying her daily up and down the stairs.
Christmas morning was the worst… she awoke with severe stiffness and eventually made it slowly down the stairs in tears.
She saw that Santa had brought her a new bike. Her Christmas wish.
She cried and laid on the floor asking for everyone to give her 15 minutes so she could feel well enough to open the rest of the gifts.
She was unable to ride her bike that day and for the first two month that she owned it.
Another trip to our local hospital on Dec 29 proved to us that nobody knew what was happening to our daughter.
Sent home again with no answers.
January 8th we woke up. Jaylene couldn’t go back to school and life was far from normal.
That morning I had her dad carry her to the van and I told him I was not coming home until someone would listen to me and that they were going to find out what was wrong with Jaylene.
I captured the attention of the first doctor that walked in the room and she listened. I was a mother on a mission.
Within 30 minutes Jaylene was being looked at by a team of doctor.
Within the next hour our lives changed.
Our daughter was diagnosed with Systemic Juvenile Idiopathic Arthritis.
Treatment began and steroids were started. This initially didn’t help and she got worse over the next 2 weeks.
We began intravenous treatments at the end of January. Tociluzimab was the first biologic we started on. Soon after we added methotrexate.
Over the next few months we tried different ways to reduce the inflammation in her skin and nothing stopped the rash.
Some of these medications even caused her to have very poor behaviours. These were stopped.
The intraveneous treatments continued ever 2 weeks until October when we opted to stop treatment of the biologic to allow Jaylene’s body to increase levels of CRP.
We did this in hopes to qualify for a research program with canikunimab.
By January this had not happened and the rash still continued getting worse to the point that it would burn and itch as the day progressed.
In February we started IVIG and had 4 rounds of that with no changes to her rashes and fevers.
These treatments brought on migraine headaches.
In Jaylenes words her life was miserable.
There was no quality of life.
She scratching daily and the burning was impossible to defeat.
On June 3 we had the first injection of Anakinra.
These daily injections have more than changed our lives.
It effects our whole family in many ways. These injections are described by Jaylene, as “ fire burning under my skin.”
The best part is we have our daughter back.
She is her old self with a toughness now and a loss of innocence that only families that suffer this understand.
We tackle this injection battle every day as a team where everyone in our family plays a part.
We will survive and give this child the life she deserves.
As Jaylene tells us “I may have arthritis but arthritis doesn’t have me.”
– Charlene Prime