The tears sit just below the surface with Belinda.
Partly from pain. Partly through frustration. Partly exhaustion.
“I’ve spent years trying to get politicians to hear me. I’ve told them about some of the rawest intimacies of my life. I’ve told them that sometimes I shit myself in public. I’ve told them about the pain, the blood, the absolute despair….it’s the medicines, that’s all we need. The medicines.”
The tears bubble up again. She calls it “a Belinda moment” but few could blame this 46-year-old for living her life on the very edge of her emotions.
Belinda’s been fighting Crohn’s disease for 25 years and, so far, she’s had 60cm of her intestines cut out. There’s not a lot left. She is worried if she has more cut out she’ll develop ‘Short Gut Syndrome’ when the body can’t absorb enough nutrients through a shortened, small intestine.
Belinda’s Crohn’s journey is a distressing one. It’s littered with physical trauma and failing health, and long, long periods of utter despair. And when those elements have collided head-on, she’s found herself balanced precariously at the intersection of life and death.
“I remember sitting on the back-door step with my head in my hands, crying, watching my daughter play outside. She wanted me to play with her, and I couldn’t move. I was in so much pain. I was passing blood and mucus. I was vomiting. And I very clearly remember thinking ‘if this is my life, I just don’t want to be here anymore’.”
Belinda needs a drug called Stelara, a biological drug that’s been publicly funded in Australia and much of the developed world for years.
There are two other drugs currently funded to treat Crohn’s in New Zealand and roughly 50% of patients respond to these. When they work, they’re described as “a miracle drug” but they don’t work for everyone, and that’s the issue.
Belinda is building a resistance to the funded biologicals and if they stop working, she will likely need more surgery and potentially an ileostomy, where the small bowel is diverted through an opening in the abdomen. Stelara has proven highly effective in treating people like Belinda with severe Crohn’s disease.
The drug isn’t funded in New Zealand.
Pharmac, our drug-buying agency, has been underfunded by successive governments for more than a decade, and New Zealand now sits at the bottom of the OECD for access to modern medicines. Stelara costs around $2k per patient, per month, but the Government is falling further and further behind in accessing modern medicines and drugs to treat New Zealanders. Much of the current focus is on the multi-billion dollar response to the COVID-19 pandemic.
Seven years ago, Belinda was struggling to find purpose. She wasn’t getting any better and the pain was ferocious and constant. She had baulked at anti-depressants, fearing they would put a band-aid over her problems, and she was seeing a therapist to help her through one of her darkest times.
“The therapist was amazing. She helped me accept that I had a chronic disease and I started to think a little differently.”
On a whim, Belinda decided she would enter the Auckland Round The Bays Fun Run, and walk the 8km to raise money for Crohn’s Disease and ulcerative colitis.
“I put on a purple tutu and a t-shirt that said ‘never trust a fart’ and off I went.”
Like so many decisions made ‘on a whim’, the decision to run Round The Bays was a game-changer for Belinda. The money she raised ultimately became some of the foundation funds for the very first Camp Purple; a 6-day camp exclusively run for children with inflammatory bowel disease.
“It’s really become my focus now. My life is my family, and making sure that we bring as many of our young community together at Camp Purple.”
The tears are back, and she apologises.
“Sorry, I get very emotional when I talk about the children.”
Belinda’s Crohn’s went into remission some years ago, long enough for her to have a child. Her daughter is “the best thing that ever happened to me” but is something of a miracle, or “a blessing” as Belinda calls her. Given the complexity of Belinda’s Crohn’s disease and the surgical scar tissue in her abdomen, it was incredibly challenging for Belinda to conceive and carry a child.
“I never wanted to travel. I never wanted the big career. I just wanted a big family with lots of children, and Camp Purple has given me that big family.”
Many children with Crohn’s or ulcerative colitis miss out on school camp. Some have complex diets and medications, and there is often a need to access toilets at night. Camp Purple – thanks to sponsors, volunteers, and a good chunk of fundraising – accommodates children with Inflammatory Bowel Diseases so they too can enjoy a full school camp experience alongside kids who are just like them.
Camp Purple is entering its eigth year, but underlying Belinda’s remarkable work is a desire to get politicians to understand the impact of their funding decisions.
“This disease is rough and it’s humiliating. It’s really hard for teenagers. They’re in crippling pain, they’re worried they’re going to have an accident at school, and they won’t make it to the toilet. Can you imagine that? Just put yourselves in their shoes for a moment. These are kids.”
One fifth of people with Crohn’s disease are children and some have or will develop the severest form of the disease. Belinda says it’s inconceivable that in a country like New Zealand, we are leaving children to suffer from such a socially isolating disease.
“It’s nerve-wracking watching someone with Crohn’s disease start to develop a resistance to the drugs. There is a drug that can help us but we don’t fund it. Why not? There is no way – no way – we should be cutting out parts of a young person’s digestive system and bowel. Not anywhere, but definitely not in New Zealand.”
“I don’t care if they can’t get me the drugs, but these kids can’t go through what I’ve been through. I can’t bear the thought of them sitting on their back doorstep and feeling how I did. Feeling so alone.”
For Belinda, it’s been a 25-year struggle with a cruel disease, but it’s a good thing that she’s still here. She’s become a voice for the struggle. Always pushing politicians. Always insisting New Zealand needs First World access to modern medicines to treat this horrible disease.