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Hidden suffering of endometriosis in NZ

Media release, April 20th 2006

Waiting list crisis unmasks hidden suffering of tens of thousands of women - urgent government action needed

There's a call today for urgent government action following media exposure this week of the crippling cost of endometriosis in New Zealand.

News of further surgical waiting list cuts will deepen the pain of the country's 128,000 endometriosis sufferers, many of whom - like the 15-year-old in this week's story - are living restricted lives, often just getting by on band-aid measures and painkillers.

Endometriosis hit media headlines this week with the news that a 15-year-old Christchurch girl has been dropped off a surgical waiting list despite having maximum points.

New Zealand Endometriosis Foundation CEO Deborah Bush says this young woman's quality of life is being severely compromised as she battles chronic pain.

"It's not only the raft of medication that she has to take to stabilise the effects of the disease and help her cope emotionally, it's also the months of missed schooling which compromises her future - and despite this, funding constraints mean her local DHB can offer no guarantee of surgery within the next six months."

Ms Bush is calling on the government to recognise the condition as one that needs urgent action, starting with a national strategy.

"Endometriosis is barely recognised by our government, and that has devastating effects all the way along the line - from funding and awareness through to diagnosis and treatment. There is no official strategy to address it at a national level, and not even official clinical treatment guidelines. Until endometriosis is officially recognised as a serious health threat, and steps taken to address it, the 15 - 20% of the female population impacted will continue to be short-changed." Ms Bush says that while the human costs of endometriosis are high, the economic costs to the whole of society are staggering. "At an individual level, lifestyle and fertility are severely impacted. At a fiscal level, it is estimated that endometriosis costs at least NZ$275 million in lost workplace productivity alone - without even starting on the social and medical costs."

Ms Bush says that while some internationally acclaimed work is being done at a local level - notably in Canterbury, where a world-first education, awareness and treatment programme has been launched through a collaboration of public and private providers - New Zealand's lack of cohesive strategy to tackle the disease sees our central government lagging behind the rest of the world.

"Even without additional funding for treatment or surgical intervention, at a local level, we have managed to make significant differences in the lives of thousands of Canterbury women and girls. This is a model that could easily be used as the basis for a national approach - but government has to recognise the seriousness of this issue first."

Ms Bush says recent European action can provide a role model for New Zealand to take action on the disease:

• The European Parliament has prepared a written declaration on endometriosis (with 30% support - the highest number of signatures ever achieved for a health issue) • The UK has an All Party Parliamentary Working Group conducting research and promoting change • Austria has adopted women's health and endometriosis as a target health issue for 2006 • The Italian Senate has taken a big step towards the official recognition of endometriosis and the need for improved therapeutic options/funding by holding an investigation into endometriosis as a social disease.

"There are thousands more young girls just like this 15-year-old who need help from their government, today, to get the early intervention and diagnosis they need to avoid a lifetime of pain and debilitation. As a nation, we're failing these girls and women right now - it's time somebody sat up and took some notice."

ENDS


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