General Manager of Bowel Cancer New Zealand
Rebekah Heal has been the General Manager of Bowel Cancer New Zealand since 2016
“Some of the most important work we do as a charity is pushing forward the concerns of cancer sufferers and reminding policy makers of the human impact of the decisions they make (or don’t make).”
Since joining Bowel Cancer NZ I’ve realised that with cancer, time is everything. If you’re diagnosed with early bowel cancer in New Zealand, there’s a 90% chance that you’ll live for at least another 5 years. That’s why the National Bowel Screening Programme saves lives; it catches cancer early. But the Programme is only open to people aged 60-74 and a lot of younger people get bowel cancer. By international standards, New Zealand isn’t great at diagnosing bowel cancer early and one-quarter of diagnoses happen in Emergency Departments., These patients tend to have advanced cancer and worse outcomes.
Surgery is the main treatment for bowel cancer. But with time the cancer may spread to the lymph nodes, meaning chemotherapy and radiation therapy may also be needed. Given more time, the cancer may metastasise and invade other organs like the liver or lungs. Surgery may still be an option, but chemotherapy and targeted drugs are often the only realistic options for patients with metastatic bowel cancer.
Targeted drugs for metastatic bowel cancer aren’t funded in New Zealand. Targeted treatments focus specifically on cancer cells and the processes driving their growth. Unbelievably, Australians with bowel cancer have been funded to take these medicines for years. New Zealanders are still waiting for even one of these drugs to be subsidised.
Why are Kiwis being denied access to these medicines? It’s because medicine purchasing by New Zealand is underfunded, the decision-making process is slow, and there is no overarching strategy for buying medicines. Out of 20 OECD countries, New Zealand was ranked last in access to modern medicines. In this country, we average 599 days to publicly fund the same medicines that Australia takes 352 days to fund, while the United Kingdom only takes 128 days. To make things worse, twice as many modern medicines are funded in Australia as they’re in New Zealand, and the United Kingdom funds more than three and a half times as many.
The result is that New Zealanders with metastatic bowel cancer are not getting drugs like bevacizumab (Avastin) or cetuximab (Erbitux).–
PHARMAC knows these medicines work too. In 2019, PHARMAC’s Cancer Treatment Subcommittee (CaTSoP) recommended that cetuximab (Erbitux) be funded as a first-line treatment for metastatic bowel cancer. CaTSoP said that a “significant benefit was seen” when this class of medicine was added to chemotherapy. It’s also been more than 10 years since bevacizumab (Avastin) was added to the Medicine Waiting List. The average time on the Waiting List for medicines to be funded is almost 5 years and growing. People with bowel cancer don’t have time to wait. In Australia, bevacizumab was funded in 2009 and cetuximab was funded in 2011.
A lack of funding is contributing to inequity. Māori and Pacifica people with bowel cancer are more likely to be diagnosed in emergency departments and are more likely to have metastatic cancer when they’re diagnosed., As they’re more likely to have advanced cancer, Māori and Pacifica are more likely to need targeted medicines such as bevacizumab or cetuximab. A lack of funding for these drugs is one of the reasons why Māori and Pacifica patients with bowel cancer tend to do worse once they’re diagnosed.
Cost shouldn’t get in the way of care. The problem with deciding who is allowed a medicine based on cost, is that it doesn’t account for the price the patient pays in lost time when they’re denied treatment. Cost-capped treatment plans are available from medicine manufacturers, but these plans only cover the price of the medicines and not the cost of administering them. Currently, unfunded medicines can only be administered in private hospitals making them even more expensive. The added financial stress is huge and makes the patient’s cancer battle even more difficult.
Yes, PHARMAC needs to save taxpayer dollars by bulk buying. But, PHARMAC also needs to be make lives better by improving care. Patients and doctors want to stop fighting PHARMAC and focus on fighting cancer.
Imagine re-mortgaging your home so your family can spend another Christmas together. People who have been told they have cancer describe how the air is sucked out of the room. Suddenly they know something is ticking inside of them, stealing their time as it grows. They can feel what they’re losing with every day that they miss getting the treatment they need.
Cancer is a plague causing nearly one-third of all deaths in New Zealand and bowel cancer is the second highest cause of cancer death., Around 3,000 people are diagnosed annually with bowel cancer in New Zealand and 1,200 people die from it. Bowel cancer could strike any of us, at any time. The number of people needing anticancer medicines is also increasing. It is estimated that the number of older people diagnosed with cancer will have almost doubled by 2050.
It’s time for change. At the moment, PHARMAC uses its statutory objective to decide which drugs it funds. But the problem is patients don’t have a say in PHARMAC’s objective. At Bowel Cancer NZ we know how desperately this needs to change. We support a Members Bill that would allow unfunded drugs to be administered in public hospitals. An example of how this would help is Andrew Speir’s gut-wrenching battle against stage 4 bowel cancer and bureaucracy. Andrew’s had to find $2000 a fortnight just to get the drug he needs injected; the cost of the medicine’s extra. The sad truth about advanced bowel cancer in New Zealand is that time really is money.
Bowel Cancer NZ has also partnered with Patient Voice Aotearoa to make sure every person in New Zealand can get the treatment they need. We attended, promoted and supported the nationwide Lie Down for Life marches where a petition signed by 100,000 was handed to the government demanding changes in how PHARMAC is run.
New Zealand needs to increase PHARMAC’s budget so that families aren’t forced to create “give a little” pages or use their retirement savings to get treatment. It’s unacceptable that our country is ranked last in OECD medicine access. But our society also needs to get better at making decisions about how our healthcare dollars are spent. We need to develop a medicine strategy that mirrors the values of the people the medicines treat. Finally, we must agree that time with our loved ones is a need and not a luxury for a few.
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