The organization understood the challenges inherent in a potentially deadly disease that was not well characterized or well understood, and for which diagnosis and treatment were therefore often delayed. Moreover, while the disease affects more than 25 million people worldwide, a majority of patients were without approved treatment. Finally, inaccurate diagnosis and inappropriate treatment escalated health care costs in the form of lost work productivity and increased treatment, hospitalization, and psychosocial support costs. New approaches were needed, including a focus on development of new and effective treatments.
VOZ Advisors helped the organization convene and facilitate a multi-stakeholder roundtable whose members were drawn from around the globe, reflecting a range of clinical, patient, research, and industry interests, and including numerous thought leaders at the forefront of research and treatment. The Roundtable met on several occasions to consider how best to equip health policy makers with information needed to make decisions reflecting the best interests of patients, and to ensure a scientific basis for informed decision-making.
With guidance from the advisory board and a smaller editorial committee, VOZ drafted a cogent and compelling policy brief and succinct one-page call to action that identified areas of most urgent need – including more timely and accurate diagnosis and an increased research effort for new treatments. Practical suggestions for addressing those needs were included.
VOZ Advisors helped secure an endorsement of the document and its call to action from a leading professional society, and planned and executed the publication’s launch in European Parliament. Individual visits with policy makers were subsequently arranged for organization leadership to help disseminate and encourage uptake of the recommendations, and the report was translated into other languages by sister agencies for use at national levels.
The policy brief elevated public debate about a disease by foregrounding patient unmet needs and health care professional concerns. The numerous companies that helped sponsor these efforts gained credibility as disease community members whose opinions and ideas were valued. The policy brief and other outreach activities enhanced policy decision-maker awareness of the need for disease awareness, improved screening and diagnosis, and treatment research. A durable platform for continued policy maker education and advocacy is now in place.
Veronica Lopez, MPH, is an independent consultant working with VOZ. Veronica helps VOZ develop new ways of building equitable and responsible partnerships between industry and patients, advocates, health care professionals, and policy makers.