At the The Impacts of Living with Endometriosis Information Night on Tuesday, we were made aware that a new(ish) treatment for endometriosis (Visanne) is not being made available in Australia because it's producer (Bayer) does not see it as a commercially viable decision. It has already been approved by the TGA in 2010 and declared safe for use. Visanne is a pill that contains dienogest, a different form of progestogen that is currently only available in Australia in pills (Qlaira & Valette) that also contain oestrogen (estradiol valerate and ethinyloestradiol, respectively). Dienogest has been found to be equally as effective as Lupron (leuprolide acetate) in the treatment of endometriosis, but with a much less severe side effect profile. One of the most shocking side effects of Lupron is bone density loss, leaving women susceptible to osteoporosis, and dienogest does not have that side effect.
The only thing stopping this medication being sold in Australia at the moment is corporations thinking that there is no market for it.
You can change that. You can email them and tell them that there is a market. They are having a meeting next week to discuss this decision so you have to act fast. Women with endometriosis need to be given more choice in treatments for their disease.
There is also a change.org petition here.
If you're looking for inspiration for what to say in your email, here are the emails my mum & I sent to Bayer:
Dear Dr Twomey
Since my oldest daughter was diagnosed with endometriosis several years ago she has undergone two medical procedures and struggled to find a contraceptive pill she could tolerate. Visanne may well be the solution that she needs.
Endometriosis must be one of the most hidden and silent diseases of our age. Since the diagnosis many of my friends and colleagues have revealed that they too suffer from endometriosis. I would assume that there are many more women who are sufferers who remain undiagnosed. My second daughter may well have the disease and not realise it because her symptoms are less severe.
Bayer could spearhead a campaign in Australia to raise awareness of the disease and market their drug to clinicians at the same time. This could be a win for both parties.
Please reconsider and provide this choice for Australian women.
Dear Dr Twomey,
I am 1 in 10 women. I have endometriosis and I want access to Visanne as a treatment choice.
I’ve tried everything else.
I’m currently on Qlaira, another one of your pills that contains dienogest (like Visanne), and I am having much success with that pill. Normally on hormonal medications I get horrible anxiety and depression, alongside many other undesirable symptoms (this includes experiences I have had on Yaz and the Mirena). However, on Qlaira, I have had none of those symptoms. My moods have even been more stable on this pill, and my skin is clearer than it’s ever been. Unfortunately, in the last week and a half, I have been back to bleeding and cramping on Qlaira, even though I am mid-cycle (on pills 16-20) and this should not be happening. I suspect that this may be because Qlaira has extra oestrogen that Visanne does not have, and adding more oestrogen to an oestrogen-fuelled disease is not a smart move. I would love to try Visanne and see what it is like for me to be only on dienogest.
Women in Australia have very few treatment options for endometriosis. I hope that Bayer will be a visionary and see to it that Visanne is made available to women in Australia. If you let us, we will prove to you that it is commercially viable. 500,000 women is a pretty big target market.
Please reconsider your decision and make Visanne commercially available in Australia. Otherwise I will be travelling to Germany to get it myself.