Sylvia Freedman is 23 years old and she has endometriosis. Sylvia’s endo is at stage four – the most severe – and her symptoms are so debilitating, it has effected every aspect of her life.
More than half a million women in Australia have this chronic, incurable, gynecological disease that often results in infertility. It can also force them to abandon their studies, their jobs and their holidays and lands them on the couch or in emergency; and often, when they want babies, in IVF.
In the course of researching the illness, Sylvia’s mother Lesley discovered that Bayer (an International Pharmaceutical company) has produced Visanne; a pill specially developed to alleviate the pain and inflammation of Endometriosis. The catch? It’s not available in Australia because Bayer didn’t think there was enough demand to make it financially viable to import it – even though it’s been approved for use here.
Instead of accepting this, Lesley and Sylvia decided to make some noise, writing posts for The Glow and Mamamia, appearing on The Project and on national radio to promote a petition they started at change.org/bayer to try and convince Bayer to change their mind and introduce Visanne.
Late last year, Bayer agreed to make Visanne available for the tens of thousands of Australian women suffering from endometriosis. Today, that promise is finally becoming a reality.
This is a post from Sylvia about this monumental day:
What an incredible day.
Visanne, the drug Mum and I asked Bayer, one of the biggest pharmaceutical companies in the world, to release in Australia is hitting the pharmacy shelves today.
Even though half a million women in Australia have Endometriosis, many people wont know why this is such a big win for us and for them.
This is what my fertility specialist Doctor Andreadis had to say:
Visanne is now an option for endometriosis patients and this is exciting for doctors too. The more options the better, as some treatments work for some women and not others. This is because we are all bio-individual. It’s a bit like shopping for a dress – you may have to try a few sizes before you find the right fit (and even then you may need some alterations).
It is unusual for consumers to make an impact on drug availability. Similarly for doctors, it is difficult to single-handedly influence pharma decisions.
There is a true power in numbers and the Freedmans have shown how important it is to use our voices (and signatures!)
And from Melissa Parker RN from the Canberra Endometriosis Centre at Canberra Hospital:
As a health professional specialising in endometriosis, the recent addition of Visanne to the Australian pharmacological marketplace provides women with increased options for reducing the impact of endometriosis on their daily lives and managing this complex disease in the long term.
Endometriosis management requires a combined approach involving healthy lifestyle measures, long term medication to suppress disease and surgical management if required. Tolerance of medication varies greatly amongst women and the challenge is to find a tolerable medical therapy amongst the options on the market as women will generally only tolerate a limited number due to side effects.
The addition of Visanne is a huge relief as this can now be offered to women as a new option and the research to date has been quite positive particularly for suppression of endometriosis as a long term option.
Our next challenge will be to make it affordable for all women through the PBS.
A symptom of ‘Endo’ is often painful periods. But did you know that periods aren’t meant to be so painful? I didn’t.
The general sentiment is: “Put up with it – it’s part of being a woman”.
Mum’s own mother didn’t discuss it with her either. So how do we know how much pain is normal? Mum says even in the ’70s, when feminism was booming, she doesn’t remember feminists discussing period pain. If we talked about how much pain is normal we might detect problems before our fertility is compromised.
When I couldn’t get out of bed because of period pain she’d yank off the doona and say, “It’s a tough life kiddo. If you miss the bus I’m not driving you.”
No, being fair, sometimes when I called her from school she’d pick me up and take me home and we’d eat cheescake like a handfruit on the couch yelling “Jerry! Jerry! Jerry!” at the telly. A welcome distraction.
Ten years later, when I was diagnosed at 21 with Endo, I finally had a name for my pain . In April last year I had my second surgery. As usual my recovery took ages. I was forced to leave my job and thought my life would be spent curled up under my blanket in agony. I felt useless, hopeless and in the way.
Both my parents were trying their hardest to keep me upbeat. Mum was also spending hours hunched over her computer. She was researching Endo. That’s how she read about Visanne which is really helping women with Endo overseas. She couldn’t understand why we didn’t have access to it here in Australia. She phoned Bayer to ask them. Then she phoned several more times.
Six weeks after her first phone call, Mum had had enough. I sat beside her while the unlucky last employee tried to palm her off. As it turned out, that woman’s own mother had Endo. That’s when Mum finally lost it. I’ve never heard her drop the f-bomb on the phone before. A few days later we were in a meeting with the medical director of Bayer. She said we had to convince the marketing department that there were enough people wanting Visanne.
And that’s how the petition came about.
By October, after six weeks of hustling media and working our smoking keyboards, we got more than 74,500 signatures on our change.org petition. Bayer phoned us to announce that we’d won – and Visanne would be here in 2015. We were thrilled Bayer had responded so quickly to the pleas of thousands of women and their families.
By then we’d realised the petition itself had provided a platform for women to express their feelings about their disease and share their stories publicly for the first time. We wept as we read them night after night. Both of us felt a strong moral obligation to continue to raise awareness, advocate and share information. So EndoActive Australia and NZ was born in our living room.
EndoActive has given me a sense of purpose and empowerment. I feel healthy, happy and strong. We’re holding the first EndoActive National Endometriosis Conference at the University of Sydney on May 16.