Stakeholders' perceptions of DNDi's interventions and collaborations in the Democratic Republic of Congo from 2005-2023: a qualitative study

This qualitative study reveals that the Drugs for Neglected Diseases initiative (DNDi) significantly strengthened health research capacity, infrastructure, and knowledge exchange in the Democratic Republic of Congo from 2005 to 2023, leading to reduced sleeping sickness mortality through the development of safer treatments and the establishment of sustainable research networks.

The Gist

Imagine the Democratic Republic of Congo (DRC) as a vast, bustling city where a silent, invisible enemy—Sleeping Sickness—has been terrorizing the population for decades. This disease, caused by a tiny parasite carried by a fly, doesn't just make people sleepy; it attacks the brain, leading to confusion, seizures, and, without treatment, death. For a long time, the only "cure" available was like a sledgehammer: a toxic drug that often killed patients faster than the disease itself.

Enter DNDi (Drugs for Neglected Diseases initiative), which arrived in 2005 like a specialized rescue team with a new playbook. This paper is essentially a report card written by the people who lived and worked alongside this team, looking back at their 18-year journey (2005–2023).

Here is the story of their partnership, told through simple analogies:

1. The Mission: From "Poison" to "Pills"

Before DNDi, treating Sleeping Sickness was like trying to put out a fire with gasoline. The old drugs were dangerous.

• The Shift: DNDi didn't just bring new medicine; they built a factory for hope. They developed a new combination therapy (NECT) that was safer, and later, a simple oral pill (Fexinidazole) that patients could take at home. Finally, they are testing a "magic bullet"—a single-dose injection (Acoziborole) that could cure the disease in one go.
• The Result: Instead of people dying in fear, they are now being cured. The number of cases has dropped dramatically, turning a once-deadly epidemic into a manageable, and potentially eradicable, problem.

2. The Construction Crew: Building the "Gym" for Health

You can't win a marathon if you don't have shoes or a track. Before DNDi, many local clinics were like abandoned garages: no electricity, broken microscopes, and no medicine.

• The Intervention: DNDi didn't just drop off medicine and leave. They acted like a construction crew and a gym coach. They repaired the clinic roofs, installed generators, gave them high-tech microscopes (so doctors could actually see the parasite), and stocked the shelves.
• The Spin-off: Because they fixed the "gym" for Sleeping Sickness, everyone benefits. A malaria patient or a child with a fever can now use the same repaired lab and the same clean beds. The whole hospital got a makeover.

3. The Training Academy: Turning Locals into Experts

Imagine a group of local mechanics who only knew how to fix bicycles. DNDi came in and said, "Let's teach you to build and fix race cars."

• The Training: They trained hundreds of local doctors, nurses, and lab technicians in Good Clinical Practice (the gold standard of medical research). They taught them how to run complex studies, how to keep data safe, and how to follow international rules.
• The Legacy: These local experts are no longer just helpers; they are now master engineers. They can now design their own studies and run trials for other diseases (like River Blindness or HIV) without needing DNDi to hold their hands. They have built a "knowledge network" that connects them to scientists all over the world.

4. The Community Bridge: Breaking the Stigma

For years, Sleeping Sickness was misunderstood. People thought it was witchcraft or a curse. Families hid their sick relatives, and communities were afraid to go to the hospital.

• The Change: DNDi worked with local leaders, pastors, and community elders to change the story. They turned the disease from a "curse" into a "curable illness."
• The Mobile Units: They sent teams in trucks deep into the countryside (the "deep woods" of the DRC) to find sick people who couldn't walk to the city. They brought the hospital to the patient, tested them, and treated them for free. This built immense trust.

5. The Bumps in the Road (Challenges)

Even a great rescue mission has hiccups. The paper highlights a few real-world problems:

• The "Two-Tier" System: Some staff members who worked on the DNDi projects got extra training and bonuses, while their colleagues who did the same daily work but weren't on the project felt left out and frustrated. It's like a sports team where the starters get new jerseys and the bench players get old rags.
• The "What If They Leave?" Fear: Many local workers are worried. They say, "DNDi has been our lifeline. If they leave tomorrow, will we have the money to keep the lights on?" There is a fear that the improvements might crumble without continued funding.
• Focus vs. Breadth: The project was laser-focused on Sleeping Sickness. While this was necessary, some noted that it didn't solve all the health problems in the country. It's like fixing a specific leak in a roof but leaving the rest of the house in need of repair.

The Bottom Line

This paper concludes that the partnership between DNDi and the DRC was a resounding success. They didn't just cure a disease; they upgraded the entire health system. They turned a broken, fearful system into one that is stronger, smarter, and more connected to the world.

The Final Lesson: The "rescue team" did an amazing job, but to keep the lights on and the building standing, the local community needs to be given the keys and the budget to run the show themselves. The goal now is to make sure these gains are permanent, so that when the next crisis hits, the DRC is ready to fight back on its own.

Technical Summary

1. Problem Statement

The study addresses the critical gap in research and development (R&D) for Neglected Tropical Diseases (NTDs), specifically Human African Trypanosomiasis (HAT), or sleeping sickness. Historically, treatments for HAT were toxic, dangerous, and often fatal (e.g., melarsoprol). While the Drugs for Neglected Diseases initiative (DNDi) was established in 2003 to address this, there was a need to retrospectively evaluate the long-term impact of DNDi's partnership model in the Democratic Republic of Congo (DRC)—the country most affected by HAT.

The core problem investigated is twofold:

1. Clinical Impact: Did DNDi's interventions successfully reduce morbidity and mortality and improve treatment accessibility?
2. Systemic Impact: Did the partnership strengthen the DRC's national health system and research capacity in a sustainable manner, or did it create dependencies and inequalities?

2. Methodology

The study employs a qualitative case study design covering the period from 2005 to 2023.

• Theoretical Framework: The analysis is grounded in an integrative model of organizational performance (Sicotte et al.), which evaluates organizational survival functions, alongside frameworks for Health Systems Strengthening (HSS) and Research Capacity Strengthening.
• Study Setting: Data was collected from 14 sites across five DRC provinces (Kwilu, Mai-Ndombe, Kasaï Oriental, Kasaï Occidental, and Kasaï Central), which account for over 70% of HAT cases.
• Data Collection:
  • Participants: 32 semi-structured interviews were conducted with key stakeholders, including Ministry of Health officials, Provincial Health Division managers, National Programme for the Control of Human African Trypanosomiasis (PNLTHA) coordinators, healthcare providers (doctors, nurses, lab techs), patients, and technical/financial partners.
  • Timing: Interviews were conducted via telephone between March and April 2023.
  • Analysis: A deductive content analysis approach was used, utilizing Atlas.ti software to code transcripts based on the theoretical framework.
• Ethical Considerations: The study received approval from the Ethics Committee of the Kinshasa School of Public Health (ESP/CE/026/2023), and all participants provided written informed consent.

3. Key Contributions and Interventions

The paper details DNDi's trajectory in the DRC, highlighting specific innovations and structural interventions:

• Therapeutic Innovation:
  • Development of NECT (Nifurtimox-Eflornithine Combination Therapy) to replace toxic melarsoprol.
  • Development of Fexinidazole, a fully oral treatment for early-stage HAT, eliminating the need for hospitalization.
  • Development of Acoziborole, a single-dose treatment for all stages of the disease.
• Structural Capacity Building:
  • Establishment of the HAT Platform (2005), a network of 120 members from 20+ institutions (universities, NGOs, government) to coordinate clinical trials and share methodologies.
  • Rehabilitation of health facilities, provision of laboratory equipment (e.g., microscopes with cameras), and improvement of energy/water supplies.
  • Implementation of Good Clinical Practice (GCP) training for local investigators and staff.
• Public Health Strategy:
  • Deployment of mobile units for active case finding in remote areas.
  • Free provision of treatment, diagnostics, and nutritional support to patients.
  • Community engagement strategies to combat stigma (e.g., beliefs that HAT is witchcraft).

4. Key Results

The study reveals overwhelmingly positive perceptions regarding the partnership, though significant challenges regarding sustainability and equity were noted.

A. Positive Impacts

• Clinical Outcomes: Significant reduction in HAT morbidity and mortality. The shift from toxic injectables to safer oral treatments (Fexinidazole) and single-dose therapies increased patient adherence and reduced therapeutic failures.
• Health System Strengthening:
  • Infrastructure: Rehabilitation of labs and wards benefited not only HAT patients but the general patient population.
  • Workforce: Local staff acquired high-level skills in clinical trial management, GCP, and pharmacovigilance. Some investigators gained the capacity to manage international studies independently.
  • Responsiveness: Mobile units and community relays improved the health system's ability to reach remote populations.
• Partnership Quality: Stakeholders reported excellent collaboration, characterized by transparency, financial motivation (performance bonuses), and strong knowledge exchange between local and international actors.
• Ecosystem Development: The capacity built for HAT trials was successfully leveraged for new research on Onchocerciasis (river blindness) and COVID-19, demonstrating a transferable innovation ecosystem.

B. Challenges and Limitations

• Inequality and Resentment: A major challenge identified was the disparity in remuneration and training between staff involved in DNDi-funded trials and those who were not. This created friction and frustration within health facilities.
• Sustainability Concerns: Respondents expressed fear that achievements are dependent on DNDi's continued funding. There is a lack of a clear national strategy to sustain the research capacity and infrastructure once external funding ceases.
• Scope Limitation: Improvements were largely targeted at HAT patients. While infrastructure upgrades had indirect benefits, the general population did not have equal access to the specialized inputs provided.
• Dependency: Local structures remain dependent on DNDi for the conceptualization, funding, and logistics of complex clinical trials due to a lack of long-term domestic resources.

5. Significance and Conclusion

This study provides critical evidence that public-private partnerships led by organizations like DNDi can successfully drive both therapeutic innovation and health system strengthening in low-resource settings.

• Policy Implications: The findings support the need for continued investment in research capacity in LMICs. However, they also highlight the urgent need for sustainability plans that address the "brain drain" and financial inequalities caused by project-based funding.
• Strategic Value: The DRC case demonstrates that building a robust research ecosystem (the HAT Platform) creates a legacy that can be repurposed for other diseases, aligning with the African Union's call to strengthen public health institutions.
• Future Directions: To ensure long-term impact, the study recommends:
  1. Maintaining free access to care for patients.
  2. Securing sustainable funding for health service activities beyond specific trials.
  3. Creating incentives for local researchers to lead future clinical trials to ensure ownership and continuity.

In summary, while DNDi's interventions in the DRC have been transformative in eliminating sleeping sickness and building research capacity, the transition from project-based success to a self-sustaining national health research system remains the primary challenge for the future.