Bridging the Gap in Sarcoma Care: A Vision for South Africa

By Lauren Pretorius

Imagine receiving a diagnosis of a rare, aggressive cancer, only to find that the necessary expertise and treatment options are beyond reach. This is the reality for many sarcoma patients in South Africa and other low-to-middle-income countries, where the healthcare system faces a plethora of challenges. Yet, with a collective vision, dedicated effort, and political will, sarcoma care can be transformed, ensuring that every patient receives the specialised attention they need.

The current state of sarcoma care in South Africa

The median delay in diagnosing sarcomas in South Africa is considerably longer compared to high-income countries, exacerbating patient outcomes. Sarcomas, which encompass a spectrum of cancers affecting bones and connective tissues, present a significant challenge in South Africa.

Sarcoma care in our country is underdeveloped, characterised by late presentation in patients, frequent absenteeism, delays in treatment, and difficulty in providing treatment due to resource constraints and cultural beliefs.

Most of South Africa’s state health infrastructure is designed for the screening, diagnosis, and treatment of communicable diseases. As a result, community-based healthcare professionals often lack the specialised knowledge and resources necessary for timely diagnosis and effective treatment of more prevalent cancers, let alone rarer forms such as sarcomas.

Equipment failures and resource shortages further complicate matters, underscoring the urgent need for improved sarcoma diagnosis and care strategies. Moreover, the socio-economic and health literacy status of communities makes dedicated sarcoma centres an unviable model of healthcare delivery.

The intended impact of the National Health Insurance (NHI) Bill

The recent signing of the National Health Insurance (NHI) Bill in South Africa holds promise for sarcoma patients. While the NHI aims to provide universal healthcare coverage, its success depends on integrating specialised care for rare diseases. There are concerns that the NHI may not currently address the needs of sarcoma patients due to resource constraints and high demand for general healthcare services.

However, the Sarcoma Patient Advocacy Global Network (SPAGN) has recently provided a framework and potential roadmap by which cancer advocates can enhance the political will of policymakers and implementers to allocate resources to ensure sarcoma patients receive the treatment and care they require in a manner that is cognisant of the healthcare systems and socio-economic limitations of the country.  The publication “What is a sarcoma ‘specialist center’? Multidisciplinary research finds an answer” establishes criteria of a sarcoma specialist treatment, based on inputs from experts and patient groups from around the world.

Since its inception, Campaigning for Cancer (C4C) has sought to be the voice of South African cancer patients, ensuring they receive the right treatment at the right time with no discrimination and as few challenges as possible—something that our country’s constitution affords each South African.

A watershed moment for sarcoma advocacy

It is for these reasons that the agreement between SPAGN members and the publication of the definition, core principles, and features of a "Sarcoma Intelligent Specialist Network" are seen as a watershed moment for advocates in low-to-middle-income countries like South Africa. For the first time, a global collection of sarcoma patient advocates agreed to develop a solution that spoke to the health environments in which almost 75% of the world population of sarcoma patients lives—an accolade we as patient advocates should trumpet to decision-makers and policymakers.

In the next few months, we at C4C will undertake an advocacy campaign amongst health care practitioners and professionals to introduce them to the concepts put forward in the "Sarcoma Intelligent Specialist Network" paper. This is an opportunity to provide innovative thinking that acts as a call to action for enhanced solutions achieved through public, private and patient partnerships.

Practical steps towards a Sarcoma Intelligent Specialist Network

To translate the concept of sarcoma specialist centres into a reality in South Africa, several practical steps can be taken:

• Training and education: Enhance training for healthcare professionals in the concepts of the specialist network while establishing ties between training stakeholders and treatment facilities.
• Public-private partnerships: Engage with newly elected actors at national, provincial, and treatment facility levels to inform them of requirements for Intelligent Specialist Networks. Liaise with professional and specialist associations and societies to establish buy-in to the concept of the network.
• Patient support and advocacy: Strengthen patient support networks and advocacy efforts to raise awareness about the paper through media and communication channels.

The journey towards improving sarcoma treatment in South Africa is challenging but not unachievable. By focusing on specialised care, leveraging public-private partnerships, and ensuring that the NHI supports rare cancer patients, we can make significant strides forward. As the American surgeon and researcher Dr. Atul Gawande eloquently stated: "Better is possible. It does not take genius. It takes diligence. It takes moral clarity. It takes ingenuity. And above all, it takes a willingness to try."

Photos provided by Campaigning for Cancer