Haystack Project works on solving for a health system not designed to fully consider the lived experience of rare and ultra-rare patients. As COVID-19 cast a spotlight on the profound impact that racial and geographic inequities have on health outcomes, Haystack’s participating advocacy organizations asked for support in illuminating and addressing the needs of historically underserved patients and their communities.
First HEAT Report Released
Haystack Project and the Siegel Rare Neuroimmune Association (SRNA) released the first Health Equity in Access to Treatments (HEAT) Report for Neuromyelitis Optica Spectrum Disorder (NMOSD). The report highlights disparities in access to timely diagnosis, treatments, and specialist care, particularly among patients in rural or low-income communities. Survey findings revealed that nearly one in five patients could not access FDA-approved therapies recommended by their clinicians, often due to insurance “step therapy” barriers. Patients also reported delayed diagnoses, high levels of disability within the first few years of disease onset, and unequal access to care depending on presenting symptoms and geographic location.
The HEAT Report provides data-driven recommendations to improve equity, increase outreach to underserved populations, and support SRNA’s mission to strengthen advocacy and education for the NMOSD community.
Read the full HEAT Report here
Read the full Press Release here