Teen campaigns for wonder drug
Taylor Fincham has never felt sand between her toes nor attended a school camp.
But that hasn’t slowed her crusade to get Pharmac funding for a drug she hopes can slow her aggressive muscle disorder.
Taylor, 17, is one of 35 children and young people in New Zealand who need a drug called Spinraza, but Pharmac is unable to fund it because it does not have the budget.
She was born with spinal muscular atrophy, a genetic neuromuscular disorder affecting the nerve cells controlling voluntary muscles.
The disease affects her ability to walk, eat and breathe. It also gets worse with age.
Taylor’s mother Heidi has fond memories of her daughter running around as a toddler. She waddled like a penguin and often fell over, much to the amusement of her family.
‘‘We thought it was cute and she was a bit slow leaning to walk,’’ Heidi said.
Now, the Tararua teen is confined to a wheelchair and requires her father to move her as she sleeps.
She lives with a permanently displaced hip because the muscles have worn away and doctors are too afraid to do surgery.
She’s dying slowly, but she puts on a brave face and goes to school each day.
‘‘Every morning I wake up with sore shoulders or I’m stiff, but I don’t dwell on it,’’ Taylor said. ‘‘I do get frustrated when I can’t do something, like tie my hair up, because some days my arms are too sore. But I try to get on with things.’’
A keen artist and aspiring university student, Taylor was excited when the drug Spinraza hit the shelves inmore than 50 countries in 2015.
Each year she waits with bated breath for the Government to consider it for public funding. With her condition deteriorating, Taylor went to Parliament last year to present a petition with 15,000 signatures supporting the drug. However, she has not had a response.
Patient Voice Aotearoa trustee Fiona Tolich was ‘‘deeply disturbed’’ children were fighting to have access to amedicine proven to stop the progression of the condition. ‘‘At a time when the Government is giving out cash for just about everything, imagine being the parents of these children and realising that the Government sees no
value in treating them. ‘‘This is a matter of the New Zealand Government prioritising the lives of our kids. Where is the kindness? How the hell is this happening in New Zealand?’’
Pharmac’s director of operations Lisa Williams was unable to provide the estimated cost of funding the drug in New Zealand. The drug remains an option and Williams said its manufacturer, Biogen, has been encouraged to submit an updated proposal with revised pricing.
‘‘We have determined that, at this time and given the amount of investment funding currently available, we will focus on progressing funding options that are ranked higher than [Spinraza].’’
Meanwhile, Heidi said taxpayers would bear a greater cost if these conditions worsened.
‘‘We’ve got 35 kids [with muscular atrophy] in New Zealand and we need to ask ourselves – how much do we value their lives? We boast about how much of a great country we are, but there’s 50 other countries that fund this drug. Ultimately, these kids are just going to grow up and put more pressure on the health system.’’