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Advancing Patient Advocacy in Mycology: Cultivating Collaboration in Education, Research, and Policy

Summary

This paper highlights how patients with fungal infections and their caregivers are rarely included in discussions about healthcare policies and research funding, unlike patients with cancer or HIV. The authors argue that fungal diseases deserve more attention and resources, and that listening to patient experiences is essential for improving how these diseases are prevented, diagnosed, and treated. They propose that dedicated advocacy organizations, like the MyCARE Foundation, can help bridge this gap and ensure fungal infections receive the policy support and research investment they need.

Background

Fungal diseases impose significant burden on individuals, healthcare systems, and societies worldwide, yet patient advocacy remains absent in policy formulation, funding decisions, and research priorities. Unlike diseases such as cancer and HIV/AIDS, which have benefited from patient perspectives in shaping healthcare agendas, fungal diseases have been relegated to the sidelines despite their prevalence and impact on public health.

Objective

This paper addresses the pressing need for a coordinated effort to elevate the patient voice in advocating for improved policies, increased funding, and enhanced research initiatives regarding fungal diseases and antimicrobial resistance.

Results

Key findings reveal a lack of cohesive advocacy strategy for fungal diseases, insufficient awareness among at-risk populations and policymakers, messaging gaps that fail to emphasize fungal pathogens in AMR discussions, and legislative/funding frameworks that disproportionately favor bacterial pathogens while excluding fungal diseases.

Conclusion

Patient advocacy organizations represent a powerful yet underutilized force in shaping policy and research for fungal diseases. By addressing collaboration gaps, ensuring consistent messaging, and meaningfully engaging patient advocates in decision-making, stakeholders can drive transformative change and improve outcomes for those affected by fungal infections.
  • Published in:Mycopathologia,
  • Study Type:Review,
  • Source: PMID: 39775206, DOI: 10.1007/s11046-024-00906-6
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