A Multifaceted Approach to Advocacy in the Rare Disease Community: A Case Study of the Pulmonary Hypertension Association

Degree Name

MA in Sustainable Development

First Advisor

Jeff Unsicker

Abstract

Members of the rare disease community face a great number of obstacles, many of which stem from a lack of awareness of the illness in the general public. For patients with pulmonary hypertension, these problems often range from personal struggles in managing the disease and coping with a poor prognosis, to lack of research funding and limited treatment options. The Pulmonary Hypertension Association was formed to address these problems and work with patients, caregivers, family members, physicians, and politicians to find solutions and ultimately, a cure for the disease. Through direct and indirect advocacy, leveraging of political power, and involving both grassroots constituents and experts in the advocacy work, the Pulmonary Hypertension Association has built an effective and collaborative advocacy process across its many advocacy efforts.

This case study focuses on several initiatives addressed by the Pulmonary Hypertension Association’s Advocacy and Awareness Department. It examines the problems the pulmonary hypertension community faces, the diverse array of strategies used to address these problems, and the connections between these strategies. The case study includes a reflective analysis of a grassroots awareness raising campaign, a disease-specific legislative bill with direct and indirect tactics, an advocacy initiative regarding a particular health insurance coverage policy, and a point of convergence for the strategies and connections the other three have created.

This multifaceted approach towards advocacy has proven to be effective in addressing several of the many problems rare disease patients face. This case study evaluates the success of these initiatives, the lessons learned from them, and the direction in which the programs will continue to progress.

Disciplines

Health Policy | Social Welfare

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