Building a Prioritisation Tool for South Africa: Why Patients Must Be at the Centre

Healthcare is changing. The future of medicine is no longer built only on broad planning for large populations. Increasingly, treatments are becoming smarter, more targeted, and patient-focused. From precision oncology to rare disease therapies and advanced diagnostics, innovation is racing ahead.

But this raises a critical question: is our health system ready to adapt?

At the recent SAHTAC Roundtable on “Exploring the Development of a Prioritisation Tool for Health Products for Priority Diseases in South Africa,” Rare Diseases South Africa (RDSA), a proud member of SAHTAC, joined government, researchers, healthcare providers, funders, and industry stakeholders to explore how South Africa can design a tool that ensures procurement and policy decisions are fair, transparent, and aligned with real patient needs.

Who is SAHTAC?

The South African Health Technologies Advisory Committee (SAHTAC) is a multi-stakeholder platform that brings together government, academia, civil society, and industry to support evidence-informed decision-making around health technologies in South Africa.

Why a Prioritisation Tool Matters

A prioritisation tool is not just a technical exercise. For patients, it determines whether they get access to timely diagnosis and treatment. Without structured prioritisation, decisions risk being inconsistent, politicised, or based on what is easiest to procure rather than what is most needed.

Internationally, prioritisation tools have proven their value:

• WHO provides global guidance through its Essential Medicines and Diagnostics Lists.

• NICE (UK) combines evidence with patient engagement to build legitimacy.

• HITAP (Thailand) balances cost-effectiveness with equity in its universal health system.

• Brazil and Colombia have reformed their processes to ensure patient rights are protected while keeping systems sustainable.

The lesson is clear: successful tools are transparent, participatory, and rooted in evidence.

The South African Reality

During the Roundtable, RDSA highlighted several challenges specific to our context. While the Department of Health already uses systems like demand planners, procurement frameworks, and the National Surveillance Centre (NSC), these tools are not sufficient for prioritisation.

Key gaps include:

• Facility capacity: Many facility pharmacies are already struggling to meet existing demand. Simply delivering more medicines to facilities will not guarantee patient access.

• ICD coding: In the public sector, ICD codes are not consistently used. This means reporting is activity-based (how many medicines dispensed), not disease-based (how many patients living with specific conditions). As a result, whole disease areas, from cancers to rare conditions, remain invisible in the system.

• National Surveillance Centre: Without a national electronic health record, reporting is largely manual. Under-reporting is estimated at around 95% for common disorders. This means most patients are simply not captured in the data that informs planning.

• Demand planners: Current forecasting tools only reflect past consumption. They cannot identify innovation, unmet needs, or rare diseases.

For patients, this has serious consequences. If you are not in the data, you don’t exist. And if you don’t exist, your treatment will not be prioritised.

What South Africa Needs

A South African prioritisation tool must be designed to complement and strengthen these existing systems, not replace them. It must:

• Integrate disease-based data from registries, research, and patient groups.

• Account for facility readiness and capacity to deliver care.

• Ensure under-reported and rare conditions are made visible.

• Include equity as an explicit criterion.

• Consider supply feasibility, for example, what happens when the manufacturer is not based in South Africa, and how we ensure supply resilience.

Putting Patients at the Centre

As RDSA emphasised at the Roundtable, prioritisation is not about limiting care. It is about ensuring that every rand spent delivers the greatest possible health benefit in a way that is fair and transparent.

To achieve this, patients must be active partners in shaping the tool. Without patient engagement, prioritisation risks being reduced to numbers and volumes, disconnected from the lived reality of those who depend on the health system.

South Africa has strengths we can build on: the policy momentum of NHI, the development of a national HTA capability, and a strong research base. But without addressing current weaknesses in data systems and facility capacity, we will continue to make decisions in the dark.

The Way Forward

The SAHTAC Roundtable was an important step in beginning a multi-stakeholder process to design a prioritisation tool that works for South Africa. For RDSA, the message is clear: the tool must bridge the gap between innovation and health system realities, and most importantly, it must make invisible patients visible.

Because at the end of the day, prioritisation is not about lists and procurement. It is about people. It is about ensuring that no patient is left behind in the future of South African healthcare.