A petition to fund a biologic drug for Inflammatory Bowel Disease

Crohn’s and Colitis New Zealand has been campaigning for the government to fund a biologic drug to treat Inflammatory Bowel Disease (IBD). In this post I explain what IBD is, and why another biologic would help the estimated 20,000 New Zealanders living with this chronic illness achieve a better quality of life.

I was diagnosed with Crohn’s Disease when I was 22. I was living overseas, had been sick for months and had no idea what was wrong with me. Being chronically ill ruled all aspects of my life, from my physical and mental health, to how capable I was at my job and whether I could socialise with friends. It’s a story I hear often from others with Crohn’s Disease and Ulcerative Colitis, two of the forms of Inflammatory Bowel Disease. IBD takes a long time to diagnose, and it’s a big life adjustment when you find out you’ve got it.

People with IBD have immune systems working in overdrive that attack healthy parts of their digestive system and cause inflammation, in response to a perceived attack. The disease is life-long and can be controlled by various immuno-suppressant medications. When it’s not controlled well, IBD causes chronic pain, inflammation, diarrhea, bloating and weight loss. It can also cause mental health issues like anxiety from its persistent nature and not knowing when it’s going to hit. Some people also contend with arthritic joint pain and then there’s our number one favourite, fatigue.

The medical system’s first line of defence against IBD is to suppress your immune system. First, through cheaper immunosuppressant drugs such as the ones used in chemotherapy, but at much lower doses, or using steroids. These medications may stop working, have bad side effects, or you might just be allergic to them. Eventually, people may work their way up the chain to need the more expensive ‘biologics’. It took eight years before I’d run the gamut of immunosuppressants (including time not on medication at all, in remission; and time spent ill after suffering allergic reactions to meds) before I ended up needing a biologic.

Biologics are drugs that suppress the immune system through inhibiting a protein called ‘Tumour-necrosis factor’. They’re made from biologic material – the one I’m on is part mouse, part human! These medications are powerful. They can help heal the intestinal lining, which is something that first line immunosuppressants can’t do.

Eventually though, your body will build antibodies against biologics. The medication used to suppress your immune system… is now being attacked by your immune system.

At that point, the options often are to a) move onto another biologic, if its available, and hope that it works b) surgery – to remove parts of the bowel that are inflamed, or to remove it completely.

I’m on infliximab, one of the two biologics funded in New Zealand. It’s my last line of defence. In the photo that goes with this post, my baby was 1 week old and we went back to hospital to get my infusion. Prior to infliximab, I was on the other funded biologic, humira, but I didn’t respond well to it and developed drug-induced lupus. It went away went I stopped taking the medication (and I gained a huge appreciation for those who have lupus and what they go through). Despite the potential for side effects that come with many IBD medications, when these medications work, they can be life-savers.

The third biologic medication that CCNZ are campaigning for is called ‘Stelara’. Overseas, there are many more publicly-funded biologics available, for example 5 different types in the United Kingdom. If people build antibodies to one, they can move onto another. These medications aren’t just used for IBD; they’re used to treat rheumatoid arthritis and psoriasis too.

So why aren’t more funded here?

There will always be trade-offs in our healthcare system – other medical conditions need to be treated, and decisions need to be made about which medications to fund within a constrained health budget. Biologics are expensive. Stelara would cost around $36,000 per year, per patient. There are thought to be around 1000 patients in New Zealand on biologics. [I’ve recently been doing some research on this for a university paper, and spoke with Dr Richard Stein, a gastroenterologist and chairman of CCNZ, to get estimates of these figures].

According to CCNZ, biologic medications can vastly improve quality of life in people with IBD and stop un-necessary surgeries, which themselves are an expensive drain on the health system. Biologics also give people back time: less time in hospital, less time in ongoing chronic pain, less time trying to juggle the demands of being sick on top of working, studying and socialising.

IBD disproportionally affects young people. Each year CCNZ holds a camp for primary school kids and high schoolers, giving them opportunities to participate in outdoor activities and meet others with IBD. I hate to think of those kids needing surgery, when another medication could instead help them heal and give them a better quality of life.

People with IBD fight through a lot – from the struggle to get diagnosed, to managing symptoms, to dealing with medication side-effects, and knowing that IBD can flare at any time. It’s possible to find a balance between IBD being a part of your life, rather than ruling it. For me, having the right kind of medication has been an important part of achieving balance. For others, the journey has been much tougher. They’ve needed multiple bowel surgeries, given up jobs and had their lives altered in many ways.

Having another biologic would make a big difference to those of us who will need it in the future and those who need it right now. If you’d like to sign the petition to fund Stelara (along with 25,000 others) visit https://www.wecantwait.nz/.