NZ Registered Nurse working in Australia, and the daughter of a Renal Cell Carcinoma survivor.
Ten years ago, at the age of 49, my mum was diagnosed with kidney cancer (clear cell Renal Cell Carcinoma).
As is the case for many people with kidney cancer, her tumour had grown so large it finally, and suddenly, caused symptoms – severe pain, bloody urine, and anaemia requiring blood transfusions. None of her immediate family had ever had cancer, and she had never smoked, nor drank excessively. Indeed, she remains a model citizen. Throughout her journey, I have dealt with the loss of control that cancer extends to all those it touches, by compulsively researching the disease.
I found that kidney cancer is a relatively rare disease, comprising only 2-3% of all cancers diagnosed. In 2020, 807 new cases were diagnosed in New Zealand. Early identification is uncommon, and usually an incidental finding on imaging performed for other reasons.
Surgical removal of the entire or partial kidney may be curative, but to date there remains no medical cure for advanced, metastatic kidney cancer. Traditional chemotherapies are not effective for this disease, and the alternatives to it, while extending survival, have historically failed as the cancer becomes resistant to the treatment. Correspondingly the development of alternatives is ongoing, with much progress being made over the last decade – particularly in the realm of ‘immunotherapy’.
Back then, I felt keenly how terribly unlucky mum was to share her body with this unwelcome ‘hitch-hiker’ as she named it. And she is terribly unlucky. Yet she is also more fortunate than many with the same diagnosis: Fortunately, her disease had not yet spread elsewhere in her body. Fortunately, it did not return for almost a full five years, and when it did, it was a single, operable tumour, enabling her doctors to perform surgery and consequently delay commencing the use of a drug treatment that would, inevitably, fail. Fortunately, when it returned a second time, it was again solitary and operable, and an effective radiation technique had become available to New Zealanders. We still had that one drug in our back pocket.
The disease returned a third time. In her remaining kidney, and the location of the tumour would require complete surgical removal of the kidney, as opposed to a ‘partial nephrectomy’. This would have left her kidney-less, and on thrice weekly renal dialysis at a hospital two hours from her home. It seemed it was time to use the only weapon in our arsenal.
Then the Lady Fortuna smiled upon her again, and we found there was a clinical drug trial available. She met all the conditions for eligibility to participate. And now, twelve months later, my mum has experienced a ‘Complete Response’ to the trial drugs. The tumour in her kidney is gone. Medical imaging shows us she now holds a title coveted by many: ‘NED’ – No Evidence of Disease.
Now, I’ll elaborate on a few points. The drug ‘trial’ itself is not to assess an experimental drug. It is to assess the addition of one proven effective drug (Cabozantinib) to two other proven effective drugs (Ipilimumab and Nivolumab). All participants receive the combination immunotherapy Ipilimumab + Nivolumab, with the addition of either Cabozantinib or a placebo.
These two immunotherapy drugs are in fact the ‘first line’ treatment for advanced renal cell carcinoma internationally, and publicly funded by the governments of Australia, the UK, Canada, and Europe. Not one of these drugs is funded for kidney cancer by the New Zealand government.
In New Zealand, the ‘first’ line of treatment is the ‘final’ line of treatment – unless you can access a clinical trial, or pay for the medicine yourself at a cost of up to $20,000 a month.
Information available on Pharmac’s website indicates no new treatments have been approved for kidney cancer since 2012, despite the many advancements in treatment and prognosis.
A submission made in 2017 for funding of Nivolumab as a second line treatment for kidney cancer in has recently been updated – the next step appears to allow for consultation with the public. I would like them to know that this submission is now outdated, having been replaced by international recognition of the combination immunotherapy Ipi/Nivo as one of the two immunotherapy combination therapies recommended as first-line treatments, with robust evidence and long term follow-up data available.
Delving further into rejected submissions for funding of other kidney cancer drugs, reveals damning recommendations by the Sub-committee to the Committee. It is noted that there are currently no funded second-line treatments for renal cell carcinoma (RCC) in New Zealand, that current treatment options are limited, and that they are not consistent with best practice recognised internationally. It also recommends ‘a broader review of the RCC treatment landscape in New Zealand and internationally, including with feedback from specialist groups such as the Genitourinary cancers special interest group’.
The faceless Pharmac Committee is well aware that New Zealand has fallen behind the rest of the world, and there is no doubt that a person diagnosed with kidney cancer in New Zealand has a significantly worse prognosis than someone living in any other developed country in the world.
Given the responses seen in clinical trials of immunotherapy drugs, it’s no wonder that my mum’s medical oncologist finds the lack of access to publicly funded combination immunotherapy treatments incredibly difficult. When I recently enquired what one thing they would like to change about the treatment they’re able to provide to patients with kidney cancer in New Zealand, the response was… ANY additional new drug therapy would be welcomed. There is essentially only one publicly funded line of treatment (the first and final line) available to New Zealanders with advanced kidney cancer. For this reason, my mum’s oncologist is very proactive about running and recruiting for clinical trials at their hospital whenever they arise.
Efficacy of Sunitinib was compared with the combination immunotherapy Ipi/Nivo in the ‘CheckMate-214’ trial, and long term (4-year) follow-up of the trial participants reports continued improved outcomes vs Sunitinib – duration of response is longer, with a complete response rate of over 10%, and a manageable safety profile. The data indicates immunotherapy has the potential to provide a durable response.
What must that be like for these doctors, to know with certainty that the patient sitting before them could live well for a significantly extended period, perhaps even have a complete and durable response, given an opportunity to access the same treatments available in so many other countries? I can only imagine the anguish that will be and undoubtedly is being experienced by those who are not so fortunate as my mum.
The trial my mum is participating in (COSMIC-313) is no longer recruiting. And sadly, hundreds of New Zealanders with kidney cancer waiting for the next US clinical drug trial, will be treated with an outdated first line treatment and inadvertently become ineligible for future drug trials. Eligibility criteria often exclude patients who have been previously treated with other types of drug therapy.
Clearly I’m not writing (fighting) for my mum here – she is already one of the ‘fortunate’ few. If her luck holds, if she has a durable complete response to this treatment – which is entirely possible – she will continue to tend to her plants and animals, knit warm clothing for her family and for charity, take a walk into town for coffee, drive my Nanna for shopping trips out of town, be a Nanna to her grandkids, care for her partner, and be loved by many, for years to come.
Who I’m writing (fighting) for, is the rest of New Zealand. You should be able to access the same standard of care my mum has, the same standard of care all developed countries invest in. You should not be forced to rely on a well-timed US drug trial for which you can only hope to be eligible for.
You should not be resorting to selling your house to pay for it.
You should not have to die while you wait for New Zealand to catch up with the rest of the developed world.
And before you turn your mind away from these possibilities, dwell briefly upon this: ‘There but for the grace of God (or Fortuna, or whatever you may believe in), go I’.