Closing The Medicine Gap

By Alana McConnell (she/her), illustrated by Kwok Yi Lee (he/him)

At some stage in your life, either you or your loved ones will experience life-shattering medical diagnoses. Aotearoa is lagging behind other developed countries when it comes to medical funding, testing, and treatment. Alana interviews Rachel Smalley, creator of The Medicine Gap, who are working to change the system and ensure New Zealanders will be able to have access to life-saving medicine and treatment.

Just over a year ago, my dad was diagnosed with stage 4 bowel cancer. Before that, nothing was really out of the ordinary. He was a healthy, lively, high-functioning individual. The only cause for concern was a fainting spell which prompted him to eventually reach out to a GP and get some further tests done. The news hit us like a ton of bricks. The memory of sitting with him inside the doctor’s office and receiving the colonoscopy results will never leave my mind. It was bad. The cancer had been there for a number of years, and had spread to his liver and his stomach. In a split second, my dad’s future was painfully fragile. We didn’t know what the prognosis would be, we didn’t know if he had months or years left. Would the treatment be life-extending or curative?

In the past year, my dad has undergone three major surgeries, operating on his colon, his stomach, and taking away a large portion of his liver. The recovery was difficult. Hospitals drained his energy and spirit. It was heart wrenching seeing my dad so vulnerable, a position I wasn’t used to witnessing. Chemotherapy was effective, reducing his tumours by huge margins, but the side effects also took their toll. Now, against so many odds, my dad has been told that by the looks of it, he is cancer free. But with cancer, there’s always a caveat. There’s a 75% chance that it will come back. Those who are told they are cancer free have to live with the looming threat and anxiety that the cancer will show up again, maybe worse, maybe with more spread.

Recently, we also found out my dad tested positive for something called Lynch syndrome. Lynch syndrome is an inherited genetic mutation, increasing someone’s likelihood of developing certain cancers, including bowel cancer, and for women ovarian and uterine cancer. There is a 50% chance that my sister and I have inherited this gene. I am now waiting to get a genetic test that will give me answers. When I found out about Lynch syndrome, I was immediately propelled into existential fear and dread. I felt cursed in a way. I felt hopeless and terrified. I didn’t want to function in the world anymore. Now in retrospect, a lot of us have genes that don’t work in our favour. From Huntington's disease to amyloidosis, many of us have to grapple with the fact that we have a 50/50 chance of inheriting something that has the capacity to inflict huge suffering on us and our offspring.

Lynch syndrome affects the way your body reacts to chemotherapy. Although my dad was lucky with the first round of chemo, the second round didn’t work. That means if his cancer does come back, alternative treatments would be the only option, such as immunotherapy. But, a majority of alternative treatments and drugs in New Zealand are not publicly funded by Pharmac. For instance, Avastin is a biologic therapy that is registered by Medsafe but not funded. In New Zealand it comes with a huge price tag, usually $50,000. Some health insurers will cover a small portion, but those who have been told chemotherapy is not an option will have to fork out huge sums of money by remortgaging their house, dipping into their retirement funds, or using Givealittle to ask for help. It’s utterly wrong that we need to rely on friends’ and strangers’ goodwill, instead of being able to trust and rely on the medical system in New Zealand. For those who are facing a devastating diagnosis, it’s salt in the wound and even humiliating to resort to crowdfunding. It’s a vulnerable act. They are desperate to extend their life, to see their children marry, their grandchildren celebrate birthdays, and spend precious time with their spouses.

A change needs to be made. Desperately. Quickly. It’s only natural to feel disempowered within a medical system that seems rife with flaws and holes. It’s easy to feel shocked and demoralised that even though we live in a developed and prosperous country, we have quickly fallen behind with cancer care, funding, and screening. One of the answers to this overwhelming problem is The Medicine Gap.

The Medicine Gap is a social initiative created by Rachel Smalley and Carla Hofler, to highlight the huge medicine gap and disparity in Aotearoa. Rachel is the storyteller and Carla runs the digital side of the initiative. They work together to tell the stories of New Zealanders who are personally affected by Aoteroa’s lack of medical funding. I reached out to Rachel as soon as I found out about The Medicine Gap; I felt immediately connected with the work and wanted to do my part to help. After my dad was diagnosed, I quickly became aware of the huge flaws in New Zealand’s medical system, especially when it comes to funding and cancer care. I was taken aback by just how much we were lagging behind other countries.

As to what propelled the creation of The Medicine Gap, Rachel started by saying “there are very few New Zealanders who are aware of the predicament this country is in, and a group of people I know, decided to try and change that.” They realised most of us were contributing to Givealittle campaigns to help those fundraising for life-saving drugs and treatment, but the situation was escalating. Givealittle has become a mechanism for survival in New Zealand. Like myself, this perplexed Rachel. “New Zealand is not a poor country, this is not an underdeveloped country. There are thousands of families who are impacted by this and that’s why we developed The Medicine Gap”.

The goals of The Medicine Gap call for huge and transformative change. There needs to be a large overhaul in the way we approach funding medicines in New Zealand. “First of all, we need to allocate $400 million a year to Pharmac to increase funding. That will help us address around 100 medicines on the waitlist, and give our doctors the tools they need to treat modern diseases and reduce the level of suffering in New Zealand, and untimely deaths.”

Pharmac’s objectives haven’t changed since the 1990s; it’s driven to be costeffective and to acquire cheap drugs. Rachel stated, “it doesn’t consider the societal cost of not funding medicines. For example, if we don’t fund a new biologic drug to treat Crohn’s disease, some people will spend the rest of their lives in and out of hospital, and on a benefit. The cost comes out of other budgets, the Ministry of Social Development, the Ministry of Health, and the local DHB. Collectively, it costs the taxpayer a lot more not to fund the medicine, however Pharmac is only mandated to look at its own budget, not the cost to the country.”

Looking forward, what changes need to be made? Aotearoa’s health system doesn’t have a future focus. There have been rapid advances in gene technology, making huge breakthroughs in the way diseases are treated. We have the potential to turn off a disease with one injection, instead of it causing years of emotional and physical pain to people. “Our approach to modern medicines is pedestrian and sluggishly reactive,” says Rachel. “It’s failing New Zealanders. Now, more than ever, we need courageous leadership from within our health sector and within Government.”

It was hard for me to stop questioning just why New Zealand is so far behind other countries. We are quite literally at the bottom of the list of most developed countries who fund life-saving and life-enhancing drugs to their population. Rachel explained: “if you’re a well New Zealander, it doesn’t matter if a political party says it’s going to spend millions of dollars addressing the health needs of the sick. That won’t swing your vote. Interestfree student loans will. A new cycle bridge might. Support for Team New Zealand might. But medicines don’t.”

I can freely admit, I didn’t care that much about health budgets in New Zealand before my dad was diagnosed, and before I experienced my own health scares. “The issue is though, all of us at some stage, will develop a disease or will need the support from our health system to treat cancer, cardiac complications, a rare disease, the list goes on.” Rachel puts it clearly: “Every single one of us is one diagnosis away from going on a Givealittle to literally fundraise for our lives."

It’s not just about funding medicines, it’s about the all-of-life costs of not funding a medicine. For us to be empowered within a health system with gaping holes, we need to be able to find our voices. We need to understand how political change occurs. Governments are constantly polling to get a clear idea of what makes up the public narrative. If something is important to you, then the first step is to start talking about it. Get up to speed with all of the research, all the reading online.

As Rachel put it, “change occurs when you step up and refuse to step down. No one changes the world by sitting on the fence.”

The older we get, we will experience more and more health problems, either personally or with those we love. I never expected my dad to get such a huge and devastating diagnosis. It came like a suckerpunch. As a survival mechanism, we like to think we are exempt from scary words like cancer, the possibility of near-death, or painful treatments. But truthfully, we never know what’s behind the corner, or what the next day will bring us. So at least, we can do our best and connect together to make sure we are living in a country with a medical system we can trust and rely on when we need to.