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

Summary

Fungal infections are a serious public health problem, but unlike cancer and AIDS, they lack strong patient advocacy movements to raise awareness and secure funding. This paper argues that patients with fungal diseases have important insights about their care needs that could help improve policies and research if their voices were heard. The authors propose establishing unified advocacy organizations, like the MyCARE Foundation, to bring patients, doctors, and policymakers together to better address this neglected health challenge.

Background

Fungal diseases represent a significant public health burden, ranging from superficial skin conditions to life-threatening systemic infections. Unlike cancer and HIV/AIDS, which have benefited from strong patient advocacy movements, fungal diseases have been largely neglected in policy formulation, funding decisions, and research priorities. This disparity has resulted in inadequate resources and recognition compared to bacterial infectious diseases.

Objective

This paper addresses the critical need for a coordinated effort to elevate patient voices in fungal disease advocacy. The authors argue for establishing unified advocacy strategies that incorporate patient perspectives into policy development, funding allocation, and research initiatives to advance the prevention, diagnosis, and treatment of fungal infections.

Results

The paper identifies multiple factors contributing to the neglect of fungal diseases: absence of unified advocacy strategy, insufficient awareness among at-risk populations and policymakers, fragmented funding and research initiatives, and exclusion of patient advocates from legislative and funding discussions. The authors highlight how initiatives like CARB-X and ARPA-H focus exclusively on bacterial infections.

Conclusion

Patient advocacy organizations represent an underutilized but powerful force in shaping fungal disease policy and research. By establishing coordinated strategies through initiatives like the MyCARE Foundation, engaging policymakers, improving messaging consistency, and meaningfully including patients in decision-making processes, stakeholders can drive transformative change in fungal disease recognition and resource allocation.
  • Published in:Mycopathologia,
  • Study Type:Opinion/Perspective Paper,
  • Source: PMID: 39775206, DOI: 10.1007/s11046-024-00906-6
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