How patient organizations are advancing healthcare in Africa

The African healthcare landscape is rapidly evolving. A combination of population increases and a growing aged population poses a significant challenge to Africa’s healthcare systems. But, in a challenging environment, patient organizations are emerging as a powerful force for good.

By 2050, Africa will have a population of 2.5 billion, up from 1.2 billion in 2019. With the population increase comes an increase in non-communicable diseases which are projected to account for almost 50% of deaths by 2030. Communicable diseases like tuberculosis and HIV remain entrenched.

While many African countries have adopted the development goal of universal health coverage (UHC) by 2030, and some have made progress towards that goal, achieving it is by no means a certainty. Africa has the lowest per-capita spend on pharmaceuticals of any global region, and for the majority of the African population, this spend amounts to less than $25 per year. Healthcare workers are in short supply.

At the same time, patient organizations — non-profit entities established to address the needs of patients — across the continent are helping their communities affected both by infectious and non-communicable diseases. Often, this means stepping up and filling the gaps where health systems do not provide adequate care and support.

Their strength is that they address the wider needs of people living with diseases: psychosocial support, logistics, financial support or vocational training. Some of these needs are not strictly speaking healthcare — but they still present impediments to successful healthcare outcomes. In addressing them, patient organizations not only improve patients’ lives but also develop unique insights into challenges and possible solutions.

IQVIA spoke to six patient organizations — Tony May Foundation Sickle Cell Aid, C.O.P.E. Breast Cancer, the Africa Sickle Cell Organization (ASCO), Breast Health Foundation (BHF), CHIVA Africa and TB Proof — to find out how they are stepping up to meet patient needs, the vital role they play for their communities and how health systems can benefit from their expertise.

A common denominator for these organizations is a focus on education, awareness and support in one form or another, as well as enabling access to treatment.

The approach patient organizations take varies depending on the nature of the disease, on the immediate needs of the community, on the focus of the founders and on the healthcare system they operate in.

For diseases with well-established and affordable treatments, the focus is on enabling access. This can take the form of outreach to at-risk communities to provide education and awareness, of providing logistical support or of systematically identifying patient subgroups that are falling through the cracks.

TB Proof, originally founded by healthcare workers who contracted occupational TB, focuses on outreach to at-risk groups, especially young people. It employs tailor-made materials like TikTok videos and in-person gatherings like football games and music to engage with its target demographic and convey its message.

CHIVA Africa, an HIV charity based in South Africa, helps identify at-risk children with HIV and work with their families and caregivers to ensure they receive anti-retroviral treatment as part of South Africa’s programme to manage the AIDS epidemic.

For diseases like cancer, where treatment is financially out of reach for many, early diagnosis is particularly crucial; it greatly increases chances of survival. That’s why education, awareness, and diagnosis is key to Nigeria’s C.O.P.E, which provides free-of-charge screening.

The Breast Health Foundation, for its part, runs mobile breast cancer education units and provides psychosocial support to women undergoing treatment. The educational efforts extend to healthcare workers so nurses in local clinics can recognise the early signs of breast cancer and arrange a referral.

Beyond activities primarily focused on the immediate needs of people living with disease and those around them, organizations often find themselves expanding into advocacy because they reach the limits of what they can achieve with their resources. They start to push those with influence to address for root causes of patient need.

All organizations IQVIA spoke with have at one point or another worked on getting a communication line established to various levels of government to lobby for policy changes, policy implementation or in some cases even establishment of policies. Others, like the African Sickle Cell Organisation, were founded initially as advocacy groups and then moved into support.

The African Sickle Cell Organisation aims to document the extent of sickle cell disease in Kenya by collecting photos and stories of people suffering from the disease. This initiative worked: it spurred the Kenyan government to adopt a policy on sickle cell screening and treatment.

Improving adherence to healthcare treatment or plans is another area where patient organizations are making a difference. Lack of adherence is a major problem in many disease areas and not only results in worse outcomes for individual patients but also represents wasted healthcare resources and often will result in more complex treatment needs down the road. Investing in improving adherence should therefore be high on the agenda of all healthcare stakeholders.

Patient organizations can ease education-based, financial or logistical barriers to adherence. They can help their communities understand how their disease can affect them, what to expect from their treatment and why it is important to complete the full course.

Logistical support can take the shape of providing a means for patients to get to their treatment, of financial support, or, as C.O.P.E is doing, giving patients a place to stay during their treatment. TB Proof has successfully lobbied for the treatment to come to the patient — instead of patients having to go to the clinic and face long waiting times, community nurses now deliver the medication.

Collaboration with patient organizations can make a real difference to cash-strapped and resource-poor health systems. Patient organizations are reaching out through advocacy efforts. They have an intimate understanding of the obstacles their communities face. They understand their patients’ biggest pain points. Policymakers can and must learn from them.

In a healthcare environment that looks set to become more challenging, patient organizations offer a pathway to delivering the best possible care.