Haystack Project

The organization hired consultants to draft a report on value which gives payer and value framework developers deeper insights into the patients perspectives and perception of value. This provides patients a way to come together and magnify their voices so they are better heard by groups and authorities that make coverage decisions and formulary designations. The organization maintains a library of these reports so that members can learn from them, conduct their own and use them to magnify their voices.

Engage third party consultants to provide monthly and ad hoc calls with patient groups. Calls were focused on identifying issues related to systematic barriers to access to care and treatments. Consultants provided groups with guidance on the rules, regulations and laws that impact patient care including proposals currently pending with policy makers. Consultants helps collect, collate and compartmentalize which patient experiences related back to which current and pending law, regulations and proposals. Patient Groups were provided a forum from which they can learn from each other. As part of this effort, the Organization has created the Advocacy Empowerment Institute (AEI). The end goal of AEI is to better arm patients for the important role of self-advocacy. The organization has also created special member focused programs specifically tailored to address the needs and concerns of payors, minorities and rare cancer patients. Consultants also research, engage, moderate and sumarize a monthly speaker series.

Engage consultants to draft comment letters in response to federal agency proposals and legislative requests for information which impact research development and patient access to treatments critical to rare and ultra rare conditions.