Endometriosis Advocacy, Part 1: Three Decades of Lessons Learned

Heather Guidone, BCPA, is the Surgical Program Director at the Center for Endometriosis Care in Atlanta. She has lived with endometriosis for nearly forty years. This nine-lesson course was recorded live for the Save the Uterus Club. The call was billed as "The Mistakes of the Endometriosis Movement." Heather reframes it early as lessons learned, and credits patients and advocates with the movement's advances. Her first lesson: the movement didn't recognize its own power, and let institutions, professional societies, and industry set its priorities.

Heather describes how partners sometimes used advocates instead of the other way around. Her examples: patient stories turned into marketing, performative advocacy, and helicopter research that recruits patients for a grant, then disappears. She makes the case for paying patients for research, co-designing studies with them, and sharing the results. She counts the wins advocates drove: Department of Defense research funding, Connecticut's state-funded endometriosis biorepository, and more NIH funding.

Later lessons turn to what's needed now. Dr. Naomi Whittaker and Heather talk about moving from victim to the driver's seat. Heather explains why specialist care is so hard to reach. Part of the problem is billing: one code pays about the same for a quick procedure and a multi-hour excision. She makes the case for the Endometriosis CARE Act, and for treating endometriosis as an undercounted public health crisis. A clean scan doesn't rule the disease out. Part 2, Better Advocacy, picks up where this call ends.