"Beyond the Blood"

Published December 2025 · with the Public Health Association of New Zealand

Foreword

For too long, thalassaemia and sickle cell anaemia have remained largely invisible in New Zealand's public health discourse. These inherited blood disorders, predominantly affecting ethnic minority communities from Africa, South Asia, Southeast Asia, and the Mediterranean, fall through gaps in our health system, our policy frameworks, and our cultural narratives.

This think piece, co-authored by Muskaan Care Trust and the Public Health Association of New Zealand's Asian Caucus, is a call to action. We argue that supporting people affected by these conditions is not just a clinical question, it is a question of equity, of public health, and of what kind of country Aotearoa wants to be.

The invisibility problem

Ask a New Zealand-born healthcare professional about thalassaemia or sickle cell, and most will recall a brief mention in medical school. Ask a New Zealand-born policymaker, and many will not recognise the names. Ask an everyday New Zealander, and you'll find vague awareness at best.

This invisibility is not because the conditions are rare. Globally, more than 300,000 babies are born each year with significant haemoglobin disorders. In New Zealand, with our diverse migrant communities, we conservatively estimate over 280 people are currently affected, and many more carry the genes, often unknowingly.

The invisibility comes from who carries the disease. People of South Asian, African, Mediterranean, and Southeast Asian descent, communities whose health needs often go under-served by our universal but not universally-designed health system.

The systemic gaps

1. No universal newborn screening

Unlike the UK, USA, and most Australian states, New Zealand does not include haemoglobinopathy detection in its standard newborn screening (heel-prick) programme. Affected babies are typically diagnosed after they present with symptoms, often after preventable complications.

2. Inconsistent care pathways

Patients in Auckland have access to specialist haematology services. Patients in rural Northland, the West Coast, or Southland often have to travel hundreds of kilometres for the same care. There is no national haemoglobinopathy network.

3. Cultural and linguistic barriers

Most patient resources exist only in English. Most clinicians are not trained in the cultural contexts that shape how families understand inherited disease, family planning, or end-of-life decisions. Most genetic counselling is delivered in ways that don't account for collective decision-making in non-Western families.

4. Lack of community voice

Until recently, no organisation representing affected communities sat on any national health body. Decisions about screening, funding, and pathways were made without the people most affected.

What we're calling for

1. Universal newborn screening for haemoglobinopathies, added to the existing heel-prick programme by 2027.
2. A national haemoglobinopathy network that ensures every patient, regardless of postcode, has access to the same standard of care.
3. Culturally-responsive education and counselling, co-designed with affected communities and delivered in their languages.
4. Equitable access to emerging treatments, including gene therapies that are transforming outcomes internationally.
5. Sustained funding for community-led organisations like TASCA NZ that have the trust and reach the system needs.

The case for action

It saves lives

Universal newborn screening is one of the most cost-effective public health interventions ever evaluated. It prevents NICU stays, reduces childhood mortality, and dramatically improves long-term outcomes.

It saves money

The cost of treating a child with undiagnosed Beta Major from a crisis state is enormously higher than the cost of detection at birth and pre-emptive care.

It honours Te Tiriti

Te Tiriti o Waitangi obliges the Crown to ensure equitable health outcomes, not just universal access. A system that systematically fails ethnic minorities, including Māori carriers, is not living up to that promise.

It builds trust

Communities who feel seen and served by the health system are healthier on every measure. Acting on thalassaemia and sickle cell is one specific way to demonstrate that commitment.

A call to action

This document is not the end of a conversation. It's the beginning. We invite:

• Te Whatu Ora and the Ministry of Health to formally evaluate universal newborn screening for haemoglobinopathies in 2026.
• Pharmac to evaluate gene therapies for thalassaemia and sickle cell.
• The Royal Australasian College of Physicians and the Royal New Zealand College of GPs to embed cultural-safety training and haemoglobinopathy awareness into curricula and CPD.
• Universities and research funders to support more NZ-specific research into haemoglobinopathies in ethnic minority communities.
• Community organisations, faith leaders, and advocates to walk with us, your voices are the ones that ultimately move policy.

Muskaan Care Trust and the PHANZ Asian Caucus stand ready to work alongside any institution willing to take this seriously. The opportunity is here. The case is clear. The time is now.

Acknowledgements

This think piece was authored by Vivek Vij (Chairperson, Muskaan Care Trust) with contributions from Dr Previn Dalal, Nivedita Sharma Vij, Dr Preetam Rao, and the PHANZ Asian Caucus. We thank the whānau who shared their stories, the clinicians who shared their expertise, and the Public Health Association of NZ for partnership and publication.