Consultation on funding medicines for paediatric cancers

Medicines Consultation Closed

Pharmac has sought feedback on rule 8.1b of the Pharmaceutical Schedule, a unique exception that means any medicine used to treat cancer in a paediatric setting is automatically funded without a Pharmac assessment.

Funding process for child cancer medicines to remain

On 15 March 2024, Pharmac announced that rule 8.1b would remain the same. Children with cancer, who are treated in a paediatric setting, will continue to get funded access to any medicine that could treat their cancer.

Read the full decision announcement

The initial consultation has now closed and Pharmac are contacting everyone who submitted feedback.

Due to the substantial amount of feedback, we received in the consultation and to ensure that we have heard peoples’ voices accurately we will take some time to review this information and may seek clarification or further information from submitters. The next step in the review is to analyse all consultation submissions and share a summary with the public.

Following the analysis of submissions Pharmac will determine whether there is a problem with the current funding structure of child cancer medicines. If an issue is identified, based on feedback Pharmac will identify several options to resolve the issue and re-consult on these options with the public.

About the consultation

In November 2022 we published a detailed consultation document exploring the specific issues of rule 8.1b and we asked for the public’s input as part of this review. The consultation was open for three months until 27 March 2023.

We published a detailed consultation document that explores the specific issues we would like input on as part of this review. 

Download this summary page as a PDF [PDF, 1.1 MB]

Media release: Pharmac seeks feedback on the funding of paediatric cancer medicines

Review of rule 8.1b of the Pharmaceutical Schedule

Why Pharmac is reviewing rule 8.1b

Normally, all medicines go through a rigorous evaluation process before we decide whether to fund them. We make an exception for medicines to treat children with cancer – paediatric cancer medicines can be funded without any evaluation from Pharmac. This exception is known as rule 8.1b. 

Rule 8.1b was set up when Pharmac took over funding decisions for cancer medicines from District Health Boards in 2005. We’re looking at the rule now because concerns have been raised around its fairness when compared with other populations and conditions, as well as the growing costs of new paediatric cancer medicines. 

We are not committing to making changes to rule 8.1b – it is too early in the process to know whether any change should occur. We need your help to understand the impact rule 8.1b has on paediatric cancer care in Aotearoa New Zealand. 

The system of care for paediatric cancer treatment

Paediatric cancer is a complex area of health care. In New Zealand, health outcomes for children with cancer have improved drastically over the last several decades. Access to medicines is important, but it is only one part of the picture. 

There are two specialist treatment centres for paediatric cancers located in Auckland and Christchurch, and a network of regional care centres. Innovative, research-based treatment, such as participation in clinical trials of new medicines, also plays an important role. We understand that, in some cases, rule 8.1b makes accessing the latest medicines for these purposes easier and faster. 

The growing cost of new paediatric cancer medicines

When rule 8.1b is used, health care providers make funding decisions about what treatments are clinically appropriate. Our data shows that it is often not used. In 2020, 93% of medicines were already listed on the Pharmaceutical Schedule. That means only 7 percent of paediatric cancer medicines required rule 8.1b to be funded. Even so, this small proportion of cases accounted for half of the overall spend on all paediatric cancer medicines.

Expenditure on all paediatric cancer medicines currently accounts for less than 1 percent of the total budget for medicines and related products set by government. However, the cost of paediatric cancer medicines has been rising each year. New, expensive treatments are being developed some costing up to $1 million for a single person. 

Equity concerns and the impact on broader health outcomes

While rule 8.1b has a number of benefits for paediatric cancer care, a critical issue to consider is whether it is equitable. For example, the same funding access to medicines does not apply to other children, people with rare disorders, adolescents and young adults with cancer, and others experiencing inequitable health outcomes. 

We need to consider if there are good reasons why paediatric cancer medicines should be treated differently to everything else – that is, whether rule 8.1b is needed We need to understand how it aligns with our purpose of delivering the best health outcomes for New Zealand. And we must consider how it meets with our commitment to te Tiriti o Waitangi and expectations under the Pae Ora (Healthy Futures) Act 2022.