Why patient voices matter in health procurement

Procurement decisions shape far more than medicine supply: they influence whether patients access timely care and complete treatment. In Nepal, the experience of one family highlights why patient voices must be at the centre of procurement reform.

Family support officers counsel families and communities, advocate for their treatment, and bridge language and cultural barriers. Photo: Heli Jimee Rai

The Madan Bhandari Highway offers stunning, cinematic panoramas of rolling hills and verdant countryside that capture the imagination and hearts of tourists. But 37-year-old Rita* and her 12-year-old son Rupesh* rarely took in the scenery on the 14-hour journey from their home in Barahakshetra to Nepal’s capital city, Kathmandu. The pair have made the trip multiple times, but their minds were invariably focused on young Rupesh’s treatment for B-cell acute lymphoblastic leukemia (B-cell ALL), a rare type of blood cancer.

Only privately funded or minimal care was available in Barahakshetra due to unreliable local medicine supply systems, so Rita and Rupesh, like thousands of families dealing with cancer in low- and middle-income countries (LMICs), have had to endure difficult journeys, disruption, confusion, and draining costs to access life-saving therapies often taken for granted in high-income nations.

“It was all so daunting. I’d never been to Kathmandu before, but I didn’t have any choice, and I didn’t feel in control of anything,” Rita says, suppressing her tears.

Poor access to care

A cancer diagnosis at any age in any geography is a gateway to competing forces of turmoil and despair, resilience and recovery; but, too often, it also opens a trapdoor to suboptimal care and poor access to transformative therapies or cures. In high-income countries, more than 80% of children with cancer are cured while in many LMICs, less than 30% survive beyond five years.

Resource-stretched LMICs must make harsh decisions on treatment provision, healthcare system structures, and supply chains that can be an exercise in administrative elasticity rather than targeted efficacy. Those decisions often begin with procurement: determining which medicines, diagnostics, and equipment can be purchased, funded, and delivered to patients. Even so, patients and their families can then be left to scrabble for services and endure chronic uncertainty about the continuum of care, adding further jeopardy to recovery.

“It is never just one missing machine, one missing drug, one missing protocol, or one missing specialist. The real challenge is the fragility of the whole ecosystem.”

Nepal operates a mixed private and public healthcare system. A 2025 report by the Nepal Paediatric Society called for urgent policy interventions stating: “Childhood cancer remains a significant health challenge in Nepal, affecting approximately 1,300 children annually. Despite some progress, gaps in awareness, access to care, and financial support hinder effective treatment.”

Rita’s family was plunged into the human consequences of those inadequacies when Rupesh experienced prolonged loss of appetite followed by blood and bone marrow tests that showed worrying results, but no clear diagnosis. The next steps are indicative of the disconnect between healthcare provision and the people it serves: Rita had to pay privately as the local government hospital did not have the technology needed for Rupesh’s care; the initial diagnostic tests were deficient and led to a trip to Kanti Children’s Hospital in Kathmandu for further testing; and their only treatment option involved the regular 14-hour trips to the same hospital for chemotherapy.

“The bus journey is not easy; one time Rupesh was really ill and I had to persuade the bus driver to stop so we could help him by giving him a painkiller and then continue the journey,” Rita recalls.

More than a missing medicine

Procurement and supply chain weaknesses remain a major barrier to effective childhood cancer care in LMICs, affecting the availability of medicines, diagnostics, and essential equipment. “The challenges are multiple and interconnected. It is never just one missing machine, one missing drug, one missing protocol, or one missing specialist. The real challenge is the fragility of the whole ecosystem,” observes Professor Cristina Stefan, a global expert on child cancer care and a senior consultant for the World Health Organization (WHO).

Effective healthcare procurement ensures every pathway, from pathology and laboratory capacity to surgery and chemotherapy, is available when needed. Photo: Kema

“Paediatric oncology depends on pathology, imaging, laboratory capacity, blood products, surgery, radiotherapy where needed, chemotherapy, intensive care, infection control, pharmacy systems and reliable supply chains. If one part fails, the whole pathway is compromised,” Stefan adds.

This means procurement is not simply about securing individual medicines or devices; it is about ensuring every component of a treatment pathway is available when needed.

No clear outcome data

Stefan highlights that many countries do not have complete cancer registries or reliable outcome data to build effective strategies, including for procurement of medicines, making it harder for countries to forecast needs and ensure consistent access to treatment.

“Without data, children become invisible to policymakers. What is not measured is rarely funded. In many national cancer control plans, childhood cancer is mentioned but not costed properly. There is often no dedicated budget line, no health economic analysis, and limited expertise to translate childhood cancer needs into sustainable financing models,” she explains.

“Systems are often created without patient involvement, and it is one of the most important lessons in global health.”

The issue is taking centre stage and the WHO Global Initiative for Childhood Cancer is aiming to raise the survival rate for childhood cancer worldwide to at least 60% by 2030 while reducing suffering and improving quality of life. The challenge straddles medical, economic, and political dynamics, which often swamp the patient voice. Stefan, who has worked extensively across the world driving sustainable healthcare systems, particularly in Africa, notes: “Systems are often created without patient involvement, and it is one of the most important lessons in global health.”

Goodwill is not enough

Efforts to strengthen procurement and medicine access are most effective when informed by the experiences of the patients they are intended to serve, says Stefan. “Many cancer programmes are designed from the perspective of hospitals, ministries, donors, clinicians, or external partners. These actors may have excellent intentions. But if the patient and family voice are not present from the beginning, services can be technically correct and still practically inaccessible,” she explains.

“Goodwill is not enough. We need design based on lived reality. Patient voice helps systems understand what the barriers really are: distance, cost, fear, stigma, language, mistrust, family responsibilities, cultural beliefs, gender dynamics, documentation, waiting times, and the practical burden of repeated visits. These are not ‘soft’ issues. They determine whether a child completes treatment.”

This patient-centred approach is reflected in potent initiatives such as World Child Cancer’s Shared Care Programme, which works to connect specialist hospitals with local health centres across Nepal, enabling faster referrals and supporting ongoing treatment closer to patients’ homes after initial treatment in Kathmandu.

“The aim is to make it easier for patients, their families, and staff and to ensure the right care is available to them. It is holistic support that connects different elements of care, which is essential,” says Dipika Joshi, World Child Cancer’s Asia programme manager.

The aim of patient-centred approaches like shared care is to make it easier for patients and their families to access the right care. Photo: Kevin Yung

“Part of our role is to work with governments to streamline processes and help patients navigate complex healthcare systems. While bringing care closer to home is important, we also need to ensure continuity of care to minimise or eliminate gaps.”

The programme has grown to include seven shared child cancer care centres outside Kathmandu that are sustained by better levels of medicine procurement and supply chain resilience, and to establish psychological support for parents to run alongside improved medical and nursing capacity.

Scalable and sustaining change

Joshi believes the programme is “very scalable and self-sustaining”. “We provide equipment and training to establish uniform care and standardised protocols at each centre, and those teams are then able to train the next group, allowing the model to continue to grow.”

“The Nepalese government is committed to developing services with patients in mind and has established a technical working group to develop recommendations. These are important initial steps, and the country is moving in the right direction,” she adds.

A strong feature of the programme is the role of family support officers who counsel communities, advocate for their treatment, and bridge language and cultural barriers that can deter families from either seeking help or continuing treatment plans.

Family support officer Prerana Shakya has seen the positive impact the programme has had on Rita and Rupesh, who no longer need to travel to Kathmandu as his monthly treatment requirements can be administered by a local clinic just 30 minutes from their home.

“I support families emotionally and help them feel that they are not alone in this journey, building their confidence and encouraging continuity of treatment for the child,” Shakya says. “I feel very satisfied when I am able to support child patients and their families whenever they need help, and it gives me great fulfilment when I can help resolve their problems.”

Family support officer Prerana Shakya supports families as part of a programme that connects specialist hospitals with local health centres across Nepal. Photo: Heli Jimee Rai

Geopolitical factors act as a drag on the task of reversing centuries of inequality and inattention but progressive schemes and innovative thinking, aligned to local needs, are making a difference. Collaborations and partnerships are growing around the world to help address challenges and the Nepalese government is pushing forward with a programme to improve medicine and equipment procurement with a focus on delivering better services at a local level. It aims to address a wide range of issues, from replacing manual inventory systems with effective IT to ensuring adequate storage space.

A report earlier this year identified an “intricate web of difficulties” in healthcare procurement in three sample regions of Nepal, stating: “Delays in the procurement procedure, mostly at the local level, were the main obstacles to the efficient management of essential drugs. This resulted in regular shortages of these drugs, especially at the municipality level.”

Identifying the core problems is a major step forward and the government’s drive, albeit with limited resources, is working in tandem with outside support programmes such as World Child Cancer.

The charity City Cancer Challenge, which has reached 764,000 cancer patients in LMICs, frames the hope for Nepal and other countries with its annual report stating: “With continued collaboration, innovation, and dedicated resources, we can change the trajectory and create a more equitable future for all people affected by cancer.”

Hope for the future

The mechanisms of change are complex but the benefits are obvious as Rupesh nudges into the conversation to remind his mother that he has passed his fifth-grade exams at school despite missing large chunks of classes. He wants to join the army when he grows up—and that is now a possibility as the family faces the future with cautious optimism.

Keeping people and dreams alive is the guiding star of efforts to reduce the survival gap that corrodes the life of childhood cancer patients in LMICs, and that ambition and innovation need to run in parallel with logistics and realism to inch forward.

At its core, procurement is not simply about sourcing medicines and equipment; it is about ensuring children have the chance to survive, return to school, and imagine a future for themselves.

Stefan also has a dream: to establish the first campus or ecosystem where students, clinicians, researchers, communities, patients, and innovators collaborate to create ideas connected to people rather than policy or governance metrics. “If we can create environments that combine science, empathy, courage, and implementation, then I believe we can have real impact,” she says.

“Childhood cancer can be treated. Many children can survive. But it takes more than a protocol on paper, an external team visiting once, some drugs provided occasionally, or attendance at an international conference.”

She frames the potential: “What gives me hope is that the world now understands much more clearly that childhood cancer survival is not determined only by biology. It is determined by systems.

“Childhood cancer can be treated. Many children can survive. But it takes more than a protocol on paper, an external team visiting once, some drugs provided occasionally, or attendance at an international conference. It requires determination, sustained systems, local leadership, and the refusal to accept that a child’s chance of survival should depend on where that child is born.”

* Names changed at interviewees’ request