As new treatments become ever-more expensive and the population ages, experts are warning that the “train of affordable cancer care” is about to crash off the tracks.
It was February last year, and Downs had become the first international patient on a clinical trial of a new immunotherapy at Boston’s Massachusetts General Hospital. It’s called CAR T-cell therapy, in which doctors extracted and genetically engineered his own tumour-fighting cells so they could recognise and attack the cancer cells that were killing him.
In New Zealand, he’d been told nothing more could be done for him after four failed attempts at chemotherapy to treat his lymphoma. But Downs – an actor and comedian with a public profile – is “lucky”; his weekly blog about his “mild touch of the cancer” was picked up by national news website stuff.co.nz. The first post attracted 120,000 readers and was shared by patient groups around the world. Late in 2017, one of the 40-odd instalments reached the LinkedIn inbox of Pfizer’s New York-based chief development officer, inflammation and immunology, Michael Corbo, who connected him with the Boston trial group.
Downs was initially told the treatment would cost $1.5 million, a sum that would have put it out of the reach of most people. Downs, however, owned a house he could sell, had life insurance that could be cashed in because doctors said he was dying, and had a group of friends who set up a Givealittle page that raised nearly $150,000. For a man of 47 with a wife, Katherine, and three teenaged sons, it was a price he was willing to pay.
“I said to Katherine, ‘We have to put the house on the market, get a $500,000 loan from the bank … maybe I should just not do this because the worst-case scenario is we bankrupt ourselves, I go to Boston and I die anyway.’ She said, ‘No’ – and I get choked up about this – ‘the worst-case scenario is we don’t do that, you die anyway and I spend the rest of my life wondering what might have been.’ That helped me justify this big bet … because it felt like we were betting the family on this.”
One year on, Downs is fit and cancer-free. The price of the treatment was just $350,000 – much reduced from original estimates because he was well enough to spend no time in in-hospital care – and he didn’t have to sell the house. Good news all round – except that Downs is acutely aware that he’s received the sort of care that represents the high-tech, high-cost vanguard that threatens to derail affordable cancer treatment.
A new national strategy
At the end of this month, New Zealand’s top cancer specialists, health bureaucrats and others involved in cancer care, prevention and research will gather at a two-day conference in Wellington, Cancer at a Crossroads, organised by the University of Otago, Wellington and the Cancer Society to debate the future direction of the country’s cancer care.
At a time when many patients and specialists are in thrall to treatment advances, which have revolutionised outcomes in some cancers – for example, immunotherapy breakthroughs in melanoma and lung cancer – the delegates will be calling for a new national strategy to focus on planning, prevention, quality improvement and leadership.
“We are not going to high-tech our way out of cancer,” says co-convenor, Dunedin clinical oncologist and Cancer Society medical director Dr Chris Jackson. He says Downs’ story is an example of just one of the frontier therapies that are changing the face of cancer care. Although “precision” or “personalised” cancer care will increasingly become a routine part of treatment, says Jackson, “it leads us to the idea that we can treat our way out of this. We can, to an extent, improve individual outcomes, but unless we have a systematic approach, the uptake will be patchy and the most vulnerable are again going to be most likely to miss out.”
Survival outcomes for Kiwis with cancer are behind those of countries such as Australia and Canada that we are benchmarked against and Jackson warns the gap is only going to get wider without bold and ambitious prevention strategies. “Risk factors such as obesity, smoking, inactivity and alcohol don’t pertain only to cancer. If you get them right for cancer they’ll affect many other diseases, but we need more of a response. Our priorities are just not right at the moment.”
He points to the fact New Zealand has the world’s worst rate of death from melanoma, but spends less than $400,000 a year on prevention, and that fewer than a third of our primary schools are “sun smart”.
“Doing business as usual is going to leave us facing a cliff – we are in trouble. New treatments rightly provide much hope for people affected by cancer, but as a country, we must address the fundamentals of cancer control or our health system will break under the weight and many will be harmed. The harm will simply be less visible.”
A keynote speaker at the January meeting is Richard Sullivan, professor of cancer and global health at research university King’s College London. He told the Listener that patients have been “hoodwinked” by what he calls the hype and hyperbole surrounding advances in cancer research. “In an effort to keep the money flowing into cancer research, there have been gross exaggerations about a lot of the advances we’ve made. It’s set up a picture in the public mind that people are being consistently denied life-saving treatments, either as a result of resourcing issues or things not getting quickly enough to the market, and both of those things, in high-income settings, are absolute fiction.”
He says about 70% of new drugs reaching the market have little or no therapeutic value. “These drugs do not do what they say on the tin. They shouldn’t have been licensed. The clinical end points we use in trials are surrogates – progression-free survival, metastasis-free survival. These are meaningless, but somehow we suggest it’s going to lead to improvements in overall survival or better quality of life when the end points we use are simply not related to that. In addition, they have been trialled at Olympic hospitals on Olympic patients by Olympic doctors – super-selected populations in super-high-class comprehensive cancer centres. That bears no resemblance to the real world.”
The solution, he says, is simple. Research funders must become more ruthless about trial design, including enough patients to get meaningful data about overall survival, rather than soft, surrogate end points. He says many drug companies are “waking up and smelling the coffee”. “They realise if we don’t spend as much time and effort investing in surgery, radiotherapy and earlier presentation, none of the drugs are going to be worth anything.”
A culture of futile care
Sullivan was the lead author of a paper in medical journal the Lancet in 2011, which called for a radical shift in cancer policy and asked: “Are we to simply let the train of affordable cancer care crash off the tracks?” He wants to reduce the culture of “futile care” and educate the public that value-based care is not poor care. “We have to explain to people that it gets to a point when more intervention is not going to prolong your life and even if you get some, it is going to be a very miserable last few months of your life.”
Many patients end up in medical oncology when they should be in palliative care, Sullivan says. “There is a group of patients that demands it, but they shouldn’t assume everything shiny and new is going to prolong life. Patients should be critical of what doctors are doing and what research is delivering. We need to be held to account far more.”
But to hold anyone or anything to account, it’s necessary to measure results and gather data, and that’s not happening here as often as it should. When it does, it can reveal concerning regional disparities in practice, because services are run by each district health board (DHB) without a coherent national model. For example, research by radiation oncologists in association with the Ministry of Health, released to DHBs in February last year, showed how patients in rural areas were missing out on radiotherapy because of the need to travel to main centres that had linear accelerators. The research has driven plans to install the machines in Hawke’s Bay and Taranaki.
Dunedin radiation oncologist Dr Shaun Costello, part of the group that ran the research, says the world-first data – the study was able to be done only because patient treatments are tracked using New Zealand’s national health index system, which allots each patient a unique number – is a rare opportunity to improve treatment. The research will now be replicated in medical oncology.
Another study, on timeliness and quality indicators in bowel cancer treatment and surgery, will also be presented at the conference. The data, which includes mortality rates by ethnicity, age and district health board and also re-operation rates and the numbers of patients who still require a colostomy bag 18 months after their operation, show wide regional variations.
“Some are quality related,” says Auckland colorectal surgeon Professor Ian Bissett, chair of the national bowel cancer working group. “Some can be improved relatively easily. Whether the variations are unacceptable has to be decided by the public rather than me.” He says different decisions are being made in different regions about what treatments are best for patients and there needs to be a more uniform approach.
Closing the gaps
Canadian Rami Rahal, an international expert in data measurement and monitoring, is another keynote speaker at the Wellington conference, and will chair workshops at the Ministry of Health next month to brainstorm a new strategic approach to cancer care here. New Zealand last had a comprehensive cancer strategy in a 15-year plan released in 2003. That strategy prioritised smoking control, HPV immunisation to prevent cervical cancer, hepatitis C immunisation and breast, cervical and bowel cancer screening programmes, as well as management guidelines for specific cancers.
In a planning document for 2015-2018, the National Government introduced the target that 90% of patients should receive their first cancer treatment (or other management) within 62 days of being referred with a high suspicion of cancer. Latest Ministry of Health figures show that only about half of the 20 DHBs are meeting that goal (see below).
Canada is regarded as a world leader in measuring cancer performance and identifying gaps in treatment, but Rahal, executive director of cancer control at the Canadian Partnership Against Cancer, says the systemic problems it is trying to overcome are common to many countries. Cancer systems, he says, aren’t beautifully designed, cohesive things, but have been cobbled together in a way that makes them difficult for patients to navigate.
“A patient has a screening test in a doctor’s office, so primary care is the initial entry point. The test is sent to the labs, another part of the system, then a specialist looks at the results if there is something unusual there, before an oncologist weighs in. The patient is bounced around and that’s what typically leads to wait times. We need to get better at designing a system that is efficient and effective at catching cancers early.” More screening isn’t necessarily the answer, given the risks of over-diagnosis.
Every patient who goes to a cancer clinic or consultation in Canada can access a feedback system where they rate their symptoms and feelings on a wide range of measures, including physical pain, fatigue, anxiety and depression. Their treating doctor can then monitor and compare the scores and follow-up if required.
New Zealand’s cancer outcomes, although inferior to Australia’s, are still better than most of the rest of the world, says Ministry of Health clinical adviser and paediatric oncologist Dr Scott Macfarlane. We are ranked about seventh in the world for survival – better than the United Kingdom, for example. A major factor in our national survival rate is likely to be the worse outcomes for Māori. He concedes it’s possible that in Australia, statistics for the indigenous population may be so poorly gathered or understood that they aren’t included at all, and “if we treated our ethnic population in the same way, probably our survival figures would go up”.
He believes the cancer-care model that’s been so successful here in paediatrics, of “central decision, local provision”, has potential for adult patients, particularly those with complex or rarer cancers. There are only two specialist child-cancer centres, in Auckland and Christchurch (down from five), but treatment is delivered at 14 regional “shared care” centres, a model he says has been very successful. “If you have your [child] cancer in Gore, you have the same outcome as you would if you live in Remuera and have your care delivered at Auckland’s Starship Children’s Hospital. “Although, ideally, people are treated as close to home as possible, there has to be some centralisation if you are to achieve treatment by centres that have a critical mass of professionals and patients.”
Obviously, he says, there are far more adult cancers to deal with, but the principle of centralising complex or rare cancers remains. “Common cancers would be very well dealt with at a local hospital.”
Optimism and choice
There will always be patients such as David Downs and the high-tech, high-cost headline-grabbers such as CAR T-cell therapy that will take the public’s eye off the decidedly less sexy ball of prevention. Doctors in the field say we can’t ignore the fact that we are moving into the era of precision medicine. “It is going to transform disease outcomes – but that comes with a lot of challenges in terms of cost,” says Professor Parry Guilford, director of the Cancer Genetics Laboratory at the University of Otago. “It’s wrong to criticise cutting edge as being the big problem. You have to do the research, and as part of the research, there will be high cost and difficulties, but solutions will follow.”
Patients today understand that although it’s too soon to benefit them, the research will perhaps help their children and grandchildren. “There is a moment of disappointment when they think, ‘No, it’s not going to be ready for me, but at least my children won’t suffer the way I’ve suffered,’ and that’s reassuring to them.”
Genetic tests are already a routine part of the treatment of many cancers, such as colorectal and breast tumours, and are sometimes used in others. Guilford’s team has been using measures of circulating tumour DNA to monitor relapse. Usually, patients wait eight to 12 weeks for a scan, but tumour DNA in the blood can give an indication as early as two weeks. The cost of genetic tests is also plummeting.
Downs, meanwhile, wants to use his new profile to “pay it forward” and is helping to raise money for Wellington’s Malaghan Institute, which is planning clinical trials of CAR T-cell therapy. Trials at home will give those less privileged than he is the chance to access the same, high-cost care for free. He’s also reduced the hours he works in his job at New Zealand Trade and Enterprise to devote to voluntary work, which includes talking to other patients considering travelling overseas for the treatment. “The money is not important any more. What’s always been important to me is optimism and choice. It’s less about hope. Hope feels like putting your fate in someone else’s hands.”
And if his own treatment hadn’t worked? “If I’d gone into a hospice, I would have prided myself at being fantastic at that … being fantastic at dying.”
The scarred survivors
Cancer care needs to continue once the cancer has gone, says Canadian healthcare manager Rami Rahal. “Survivors face a lot of challenges, including chronic fatigue, pain, depression and anxiety. In the past, they were treated and discharged and thrown back into the world – now, we make concerted efforts to support them so they don’t feel abandoned by the system because their disease is gone. The issues they are struggling with are being identified, and the right services provided.”
Post-treatment care enables many survivors to return to work and support their families, so it is an important economic factor. “We’re not talking about convenience issues, but pretty severe physical or psychological symptoms that can have a big effect on quality of life. Cancer is not over when the disease is over for many patients.”
Palmerston North woman Kathy Simpson says that though she demanded the most aggressive treatment possible – double mastectomy, radiotherapy, chemotherapy and tamoxifen – when her stage 3 breast cancer was diagnosed in 2010, when she was 60, she was unprepared for the debilitating pain and fatigue she continued to suffer when treatment ended. “There was a complete lack of support afterwards.”
A patient support group wasn’t the answer for her. “I lost my mother and sister and I didn’t want to make friends with a group of women suffering from cancer and lose them one by one.” She wanted access to specialist knowledge to answer the many questions about the after-effects of chemotherapy and radiotherapy. “I remember walking out of the last session of radiotherapy and just feeling petrified because I felt I was on my own now. I think anyone with a cancer diagnosis should be able to talk to someone when you’re worried but don’t want to turn up to an accident and emergency department.”
Our puzzling radiotherapy success rates.
The study found:
- Patients in the Capital and Coast and Hutt Valley DHBs have the country’s highest rate of curative intervention radiotherapy for breast cancer (80-85%). Patients in South Canterbury (42%) have the lowest, just behind Taranaki (47.5%) and Northland (57.6%). The Wellington rate is far greater than Auckland’s 64.7%, which is just short of the national average of 67.6%.
- Patients in the West Coast, Tairāwhiti and Taranaki DHB areas have some of the highest rates of radiotherapy for lung cancer – but this is likely to mean the cancers are being diagnosed later and are inoperable.
- Capital and Coast, Hutt Valley and Wairarapa have the lowest rates of radiotherapy for prostate cancer; patients in Lakes District and the South Island have some of the highest.
- Māori have higher rates of radiotherapy than other ethnic groups but that’s probably because their cancers are diagnosed later and are inoperable, or they have other conditions, which make them unfit for drug treatment.
One explanation for lower rates of radiotherapy in some DHBs is that they don’t have a linear accelerator and many patients opt not to travel to a main centre for treatment and spend weeks away from home.
Variations in breast cancer rates may also reflect patient choice. Women can opt for a full mastectomy, or a partial mastectomy and three weeks (15 sessions) of radiotherapy. Younger women are more likely to try to preserve their breasts, while older patients can prefer a full mastectomy. Others either don’t trust the more conservative treatment or don’t wish to spend weeks away from home – or can’t because of other commitments.
Costello says some centres are simply too small to provide a critical mass of patients to warrant linear accelerators, but another idea is to have a few machines outside the main centres that can be programmed remotely. “Patients would see doctors and have their treatment planned in a cancer centre, but be treated closer to home.”
This article was first published in the January 26, 2019 issue of the New Zealand Listener.