ABC problems “still here”, but there are signs of progress

One year after I’m Still Here – the investigation into advanced breast cancer (ABC) care in New Zealand that shocked doctors and patients alike – there are signs of improvement, Breast Cancer Foundation NZ (BCFNZ) reports. The Foundation issued an update to patients and supporters to mark Metastatic Breast Cancer Awareness Day, globally recognised on October 13.

I’m Still Here showed Kiwis with ABC get less treatment, and die twice as fast as people in other countries. Over the past year, there have been gains in four of the five priority areas identified:

Priority #1 – Medical Care

• Auckland and Waikato DHBs investigating low treatment rates for some patients; Capital & Coast DHB working towards multidisciplinary treatment approach
• ABC treatment guidelines planned
• BCFNZ developed training for GPs to recognise signs of advanced cancer

Priority #2 – Symptom management

• BCFNZ has developed ABCpro, a customised, digitally-led programme for reporting and managing symptoms of ABC, to be piloted at Waikato DHB
• Breast Cancer Foundation NZ has launched a pilot of a virtual reality, (VR) programme that it hopes will provide at-home relief from common ABC symptoms
• BCFNZ’s petition for free GP visits for everyone with ABC closes October 23

Priority #3 – Drugs

• BCFNZ brought Dr Fatima Cardoso to address the public and health officials about New Zealand’s shameful lag in access to drugs that are standard-of-care overseas.
• After advocacy by patients, doctors and NGOs, Pharmac announced plans to fund Kadcyla (rated by Dr Cardoso as the highest priority) from December 2019, and its intention to fund fulvestrant and a new class of drugs, CDK4/6 inhibitors.

Priority #4 – Support

• Today, BCFNZ released the first of a series of podcasts, Life with ABC, made by Jane, a documentary maker who is herself living with ABC.

The full story:

In September 2018, BCFNZ’s I’m Still Here report revealed that Kiwis with advanced breast cancer die twice as fast as people in other countries, and that many receive less treatment than expected, with half of patients not receiving potentially life-extending chemotherapy. Doctors acknowledged unacceptable delays in diagnosing advanced disease, leading to delays in treatment, and two-thirds of patients reported their symptoms were not well managed.

“Our findings were distressing and quite shocking, but since then the report has been a catalyst for a change in attitude and some positive steps forward,” said Evangelia Henderson, chief executive at Breast Cancer Foundation NZ. “There have been gains in four of the five priority areas we identified.”

Priority #1 – Medical Care

After I’m Still Here was released, BCFNZ received calls from patients whose ABC was diagnosed late because their doctor hadn’t recognised signs of the cancer coming back. The Foundation moved quickly to develop an online continuing medical education (CME) course for GPs, teaching the signs of advanced breast cancer and the importance of finding it early, which enables treatment to slow the spread of disease.

As a result of the report, several DHBs launched initiatives that could prevent patients missing out on treatment and will help ensure best practice. Auckland and Waikato DHBs have begun investigations into why patients are getting fewer treatments than expected.

At Capital & Coast DHB in Wellington, the breast cancer team is working to present ABC cases for review at a multidisciplinary meeting (MDM), allowing a range of specialists to be involved in treatment recommendations. MDMs are the gold standard of care in early breast cancer but aren’t usual for ABC in New Zealand, often due to stretched resources. CCDHB is also investigating its use and effectiveness of biopsies in ABC. Biopsies of metastatic tumours are recommended in international guidelines for ABC treatment but aren’t always routinely performed in New Zealand.

The I’m Still Here report identified the need for New Zealand guidelines for ABC diagnosis and treatment, to ensure consistency of care to the highest standards. A group of breast cancer specialists will commence work on these guidelines soon and, for the first time, New Zealand oncologists will attend the ABC5 international guidelines conference, taking place in November.

“It’s wonderful to see this level of focus on ABC, and the commitment our doctors have to ensuring patients get best care,” said Evangelia Henderson.

Priority #2 – Symptom management

BCFNZ has taken on the challenge of improving symptom management in ABC, commissioning the development of a customised, electronic patient symptom survey programme, integrated with clinical decision support (CDS), for reporting and managing of symptoms of patients with ABC. The service, ABCpro, is intended for use by a specialist ABC nurse, and the Breast Cancer Foundation’s aim is to make it available to all DHBs.

“There’s strong evidence that electronic reporting of symptoms between clinic visits enables better symptom management and improves the quality of life of people with advanced cancer,” said Mrs Henderson. “It also reduces unplanned hospital admissions and emergency visits. By integrating clinical decision support into the service, we’re enabling consistent, guidelines-based care that will address symptoms promptly.”

Waikato Hospital will lead a national pilot of the ABCpro service, with Dr Marion Kuper from Waikato DHB as lead investigator, and BCFNZ has funded New Zealand’s first ABC nurse to work with patients in managing their symptoms.

Breast Cancer Foundation NZ has also developed a virtual reality, (VR) programme that it hopes will provide at-home relief from common ABC symptoms such as fatigue, anxiety and pain. This experimental technology is about to move into a pilot phase, with Professor Lisa Reynolds of University of Auckland to head the pilot.

The Foundation is also pushing for free GP visits for people with ABC; its petition to the Government calling for free visits closes on October 23. “In our research, patients told us the inability to manage symptoms was the number one negative impact on their quality of life,” Evangelia Henderson said. “The GP can make a huge difference, and while some patients do eventually benefit from a High User Health Card that reduces some fees, we think free care should be the default from the get-go for people with ABC.”

Priority #3: Drugs

The past 12 months have seen NGOs, patients and doctors united in the call for new cancer drugs. In January, the Breast Cancer Foundation brought Dr Fatima Cardoso, arguably the world’s leading oncologist in ABC, to New Zealand. Dr Cardoso addressed public events and met with Ministry of Health and other key stakeholders to talk about New Zealand’s shameful lag in access to drugs that are standard-of-care overseas. The Health Select Committee invited her to make a submission on the subject of petitions for new drugs that it was reviewing.

The combined efforts of all parties have seen some major steps forward. Pharmac announced plans to fund Kadcyla (rated by Dr Cardoso as the highest priority) from December 2019, and patients are now receiving it free from Roche, the manufacturer. Pharmac has also announced its intention to fund fulvestrant and a new class of drugs, CDK4/6 inhibitors.

“These announcements have been great news, albeit coming far later than they should have,” said Evangelia Henderson. “We won’t stop calling for an overhaul of Pharmac’s mission and processes – we can’t keep going through the same desperate battle for every new drug coming down the line – but at the same time, we acknowledge these recent advances, which will significantly extend life for many patients.”

Priority #4: Support

There is still much work to be done to improve support for people with ABC. Breast Cancer Foundation NZ is committed to increasing the public’s understanding of the disease and people’s needs. Today, BCFNZ released the first of a series of podcasts, Life with ABC, made by Jane, a documentary maker who is herself living with ABC.

No specific progress has been made on the fifth priority identified in I’m Still Here – Investing in the Future – but BCFNZ notes that the topics identified, such as genomic testing and surveillance for advanced disease, will be incorporated into the new National Cancer Plan.

“A year ago, we called for an urgent change in attitude that sets expectations higher for people with ABC in New Zealand,” said Evangelia Henderson. “There are some great things underway, and we hugely appreciate the efforts of all those who are stepping up to this challenge. But the need is still here, the problems are still here, so we’ll keep fighting for Kiwis with ABC.”