Pharmac expands access to funded cancer medicines for adolescents and young adults

Pharmac has decided to expand access under Rule 8.1(b) of the Pharmaceutical Schedule for adolescents and young adults with paediatric-origin cancers.

Rule 8.1(b) gives children with cancer, treated in a paediatric oncology service, funded access to any medicine that could treat their cancer. 

Rule 8.1(b) was set up when Pharmac took over funding decisions for cancer treatments from District Health Boards (now Health New Zealand) in 2005.  

Around 150 children per year are diagnosed with cancer in New Zealand. Of those, many will require access to cancer treatments funded through rule 8.1(b).

Pharmac reviewed rule 8.1(b) and consulted with the public in 2023. 

Pharmac's review of Rule 8.1(b) found that adolescents and young adults with paediatric-origin cancers may experience differences in access to medicines when treated in adult services, despite similar tumour biology and treatment approaches.

In March 2024 Pharmac announced that Rule 8.1(b) would be retained and strengthened through improved governance and oversight arrangements co-designed with clinicians and patient groups. 

The review provided three recommendations: 

• Improve governance and oversight of the decisions made under rule 8.1(b)
• collaborate with clinicians to design a way to manage new and emerging therapies to ensure financial sustainability
• consider options in our current budget to improve access to treatment for adolescent and young adults with a paediatric-origin cancer regardless of where they are treated.

The first two recommendations have since been implemented and are now part of Pharmac’s core business.

For the purposes of Rule 8.1(b), paediatric-origin cancers are specified tumour types that typically arise in childhood and are commonly treated using paediatric-based treatment protocols.

•  Acute lymphoblastic leukaemia
• Osteosarcoma
• Ewings sarcoma and related bone sarcomas
• Neuroblastoma and ganglioneuroblastoma
• Ependymoma and choroid plexus tumours
• Intracranial and intraspinal embryonal tumours, including:
  • Medulloblastoma
• Rhabdomyosarcoma
• Hepatoblastoma
• Nephroblastoma and other non-epithelial renal tumours
• Other rare paediatric‑origin solid tumours where:
  • tumour biology is consistent with paediatric disease
  • treatment using a paediatric protocol is recommended by an MDT/MDM

This change aligns with clinical practice and means that adolescents and young adults with a paediatric-origin cancer will be able to access treatment regardless of whether their care is delivered in a paediatric or adult haematology/oncology service.

It will improve health outcomes and equity of access for a small group of patients with paediatric-origin cancers. For some paediatric-origin cancers, evidence suggests outcomes are improved when treatment is delivered using paediatric or paediatric-based treatment protocols.

To qualify for access under the rule, all of the following criteria must be met:

• the cancer must be considered paediatric in
• treatment must be delivered using a paediatric-based protocol
• the patient must meet Health New Zealand’s criteria for adolescent and young adult cancer services.

Pharmac reviewed rule 8.1(b) and consulted with the public in 2023. 

Since then, Pharmac has worked closely with other health agencies, the Adolescent and Young Adult Cancer Network Aotearoa, the National Child Cancer Network, and Pharmac’s Cancer Treatment Advisory Committee to make sure this change is fair and workable. 

These groups all supported the approach.

We expect around 15 adolescents and young adults a year to benefit from this proposal.

To be eligible for funded treatment under the updated Rule 8.1(b), a person must meet Health New Zealand's criteria for Adolescent and Young Adult (AYA) Cancer Services.

Health New Zealand's AYA Cancer Service is generally for young people aged 12 to 24 years. The updated Rule 8.1(b) aligns with these existing eligibility settings.

The service specification also recognises that adolescence and young adulthood are not defined by age alone. In some circumstances, a person outside the 12 to 24 age range may receive care through the AYA service where this is considered clinically appropriate.

If someone turns 25 while receiving treatment, they will remain eligible for funded access under Rule 8.1(b) until that course of treatment is completed.