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.

Physician heal thy profession: trailblazing fibroid docs shifting treatment paradigm

By Holly Bridges and Zal Press

In its 2014 roadmap for the future, the Canadian Medical Association declared “its readiness to take a leadership position in confronting the hard choices required to make health care work better for Canadians”.

Part of the solution, promised the CMA, was its framework for transformation that included:

  • Building a culture of patient-centred care
  • Enhancing patient access along the continuum of care
  • Recruiting more health care providers trained in high tech medicine

Things that are changing in caring for FibroidsWhile the CMA has a long way to go before all 72,000 of its members adopt patient-centred care to reduce wait times and fast-track better outcomes, there are pockets of practitioners who are demonstrating real leadership.

The recent Uterine Fibroid Collaborative Forum in Toronto, which saw both patients and physicians come together for the first time, offered a glimpse of this new patient-centred paradigm.

Some trailblazing Canadian gynaecologists who are on the front lines of treating women with fibroids surrendered a precious Saturday (from a workweek that is often 80 to 100 hours) to update patients on new treatment options.

Many of the gynaecologists who attended, such as Dr. Nicholas Leyland, Dr. Grace Liu, Dr. Ally Murji and even a young medical student, are true visionaries at the forefront of change. These surgeons are improving the lives of Canadian women yet often at their own financial peril (gynaecologists who practice minimally invasive gynaecology actually lose money because newer high tech alternatives pay half what a hysterectomy pays yet take twice or three times as long).

Dr. Nicholas Leyland, MD, Ob-Gyn, a long-time champion for women’s health and currently a Professor and Chair Department of Obstetrics and Gynaecology at the Michael G. DeGroote School of Medicine McMaster University, spoke of a politicized health care system.

“I can tell you that women’s’ health is just not on the radar,” said Dr. Leyland. “It’s not even part of the conversation and you can look at the quality of life data and the impact on the quality of women’s lives and it is at least as significant as the disorders that they have chosen to prioritize so ask yourself ‘Why is that?’”

A system, Dr. Leyland said, that has prioritized cancer, cardiac care, diagnostic imaging, joint replacement and sight replacement and neglected the needs of women with debilitating fibroids.

A study by the Johns Hopkins Bloomberg School of Public Health on the quality of life burden facing women afflicted with pelvic pain and Heavy Menstrual Bleeding (HMB) found that women who suffer from serious, sometimes life-threatening HMB have the same quality of life and level of function as heart attack and stroke victims entering rehabilitation.

We have to think of a different way to influence changeYet these women are not off work in treatment, or in hospital. They are working full-time, running kids to soccer, doing groceries, etc, all while struggling against the exhaustion and crippling pain that are the signposts of this condition.

Dr. Leyland and other gynaecologists who specialize in less invasive, less risky and less painful treatment options (everything from medication to keyhole surgery), are working hard to make these options the gold standard for women.

  • They have released new guidelines for the treatment of uterine fibroids which, for the first time, include non-surgical, medical management treatment options. The new guidelines can be found on the Society of Obstetricians and Gynaecologists website.
  • They are training new gynaecologists to perform less invasive surgeries.
  • They have developed an index called “technicity,” a system to monitor how many Canadian hospitals are performing less invasive hysterectomies (keyhole surgery versus open surgery).
  • And, they have formed a new society called the Society of Minimally Invasive Gynaecology.

So while their work is helping women with fibroids, there is still much work to do.

As Dr. Leyland suggested:

  • More gynaecologists need to adopt patient-centred care and follow these new fibroid treatment guidelines, which recommend hysterectomy as a last, not first, resort.
  • More patients need to understand the options contained in the guidelines.
  • Women need to pressure politicians to make women’s health a priority.

While the CMA has a big challenge ahead of it, dynamic leadership can be found in specialty practice that emulates the commitment to transformation the CMA roadmap heralds.