Sylvia Freedman is 23 years old and she has endometriosis. Sylvia’s endo is at stage 4 – the most severe – and her symptoms are so debilitating, it has effected every aspect of her life. You can read her story on Mamamia here.
One in 10 women in Australia has this chronic, incurable, gynecological disease that often results in infertility. That’s half a million women with a disease that forces 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. It costs us around $600,000 dollars a year for every woman with Endo; for doctors, drugs, surgery, natural remedies and practitioners and lost hours of work.
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.
In a private meeting they had with Bayer at the start of this process, Lesley and Sylvia were told that without at least 2000 signatures, it would be hard to make a case for the introduction of the drug in Australia. What happened next, nobody was expecting.
This week, Bayer agreed to make Visanne available for the tens of thousands of Australian women suffering from endometriosis. Here is an update from Sylvia and Lesley Freedman.
“VICTORY!! With signatures from over 74,500 supporters on change.org Bayer have just told us that they will have Visanne (Dienogest) on the shelves in Australian pharmacies early next year. WOO HOO!!!
Today there is a huge vase of flowers on the kitchen bench and a bottle of bubbly in the ice-bucket. Syl and I are floating on top of the world. Half a million other women and girls have this disease in Australia. So where’s the go-to website? Where’s the handy bunch of brochures?
Five weeks ago I felt helpless watching my daughter writhe in agony. I wondered why we didn’t know more about Endometriosis, why there was no clear information anywhere about what pain relief she should be taking. Was it ok to take Panadol and Nurofen together? Why wasn’t it working? Why did she hurt so much? Had she eaten something that upset her? Had she done too much exercise or not enough?
Sylvia and Lesley
Half a million other women and girls have this disease in Australia. So where’s the go-to website? Where’s the handy bunch of brochures? Why are there online discussion groups filled with girls asking the same questions over and over: “Why am I in pain? How can I stop it? The Pill’s not working for me, what shall I do?”
I hate feeling helpless – so I got mad. I focussed my anger on the unavailability of Dienogest in Australia which I knew was having good results for Endo overseas. It’s unfair that although Australia is almost the size of the USA and 50% bigger than Europe we are denied access to all sorts of things including drugs because we’re so far away and we have a relatively small population.