Fighting the scourge of fibroids with patient advocacy

By Zal Press and Holly Bridges

My personal reason for being here is for AdvocacyGiven the complex and frustrating journey so many women with fibroids must endure, what can women do to take more command of the journey and get better outcomes for themselves and others? We have heard how greater awareness of treatment options can empower women to advocate for themselves with their physicians. We have even heard from physicians themselves encouraging women to do so.

This kind of self-advocacy can make a huge difference on an individual level. But to drive real change in practice, the collective voice of women across the country needs to be leveraged. System change and health reform that will impact the lives of millions of women, not just one, is the result of collective advocacy. And that is what we’ve come to understand as a movement.

“You can spend a lot of time admiring a problem but no change will happen until you push on the systems that are causing the problem or the barriers that are preventing you from moving in new directions,” said Carmen Wyton, a social innovation champion, chair of the (Alberta) Premier’s Council on the Status of Persons with Disabilities and head of a new Alberta Women’s Health Coalition.

The recent gathering of fibroid sufferers and survivors in Toronto was proof positive that women are feeling empowered to advocate for themselves and the societal change that is necessary to give women better treatment outcomes.

Consider the backstory behind this growing advocacy:

  • It's about putting pressure on systemsLeading up to the most recent gathering in Toronto, members of the group continually communicated among themselves and with their own networks via social media, e-mail and phone to share their successes and their challenges.
  • The virtual group is growing by leaps and bounds every day.
  • Group members have been submitting impact statements and feedback to Health Canada on the need for approval of new drugs for the treatment of fibroids.
  • Local and national media outlets include members of the group in news stories relating to menstruation and menstrual disorders such as fibroids and endometriosis.
  • Some members have tackled candidates in their respective provincial elections asking what could be done to increase access and reduce wait times for treatment.
  • The June meeting in Toronto was the second of its kind where women from across Canada came together to galvanize their shared experiences and shape it into a growing patient movement.
  • For the first time ever there were doctors in the room; a growing group of new-school gynaecologists who are pushing for change as much as women are.
  • Those doctors encouraged members to continue advocating for better care for themselves and better care from our provincial health care systems.

In order to grow this patient movement into something truly powerful, an entity that can advocate for change at the societal level, the group has pretty much hit a fork in the road: become more organized to take their advocacy to the next level or take a pause.

On that point, Carmen Wyton offered some sage advice.

“Public policy efforts can take many years to realize wholesale change and the players will likely change through time,” says Carmen. “Small wins along the way will provide energy, demonstrate progress, and can create policy and program adjustments that add value.

“Stay true to your purpose, find a way to overcome challenges and surround yourself with people that care as much as you do and anything is possible.”

Watch Carmen Wyton’s Public Policy 101 … or how to turn patient advocacy into action.