Impact of endometriosis presented to US state legislators for the first time!

Washington DC, 17 November 2011

Women in Government’s 2nd Annual Healthcare Summit kicked off this morning with an hour-long session on endometriosis and its impact on the estimated 176 million women across the world who are affected by the disease.

This is the first time endometriosis has been addressed at a legislative level in the United States!

The World Endometriosis Research Foundation‘s chief executive, Lone Hummelshoj, who was invited as a key note speaker, emphasised how endometriosis affects women’s general physical, social and mental wellbeing during their prime and most productive decades.

She stressed that endometriosis is not a “life style disease”and that it doesn’t discriminate between age, ethnic, or social circumstances. Endometriosis affects an estimated 176 million women and girls worldwide during their prime and most productive decades — and there is no known cure or prevention.

Impact of endometriosis

Heather Guidone and Lone Hummelshoj in Washington DC at Women in Government's Annual Healthcare Summit

In her presentation Hummelshoj highlighted the key findings from WERF’s Global Study of Women’s Health (the first global prospective study to investigate the impact of endometriosis), and presented preliminary data from WERF’s EndoCost study which suggests that reduced productivity at work by women with painful endometriosis may account for twice that of direct health care costs — all because of the pain associated with the disease preventing these women to perform optimally.

“Getting the painful symptoms of endometriosis under control early is crucial, since the first global studies investigating the impact and cost of endometriosis, across ten countries on five continents, have found that women with endometriosis report a 38% greater loss of work productivity than those without endometriosis – mainly explained by a greater severity of pain symptoms among women with the disease.

What’s more, reduced effectiveness at work accounts for two-thirds of the annual costs associated with the disease (ie. twice that of the direct cost of treatments)”

said Hummelshoj, who also showed that it still takes >7 years before women, who present with symptoms suggestive of endometriosis, are diagnosed and treated – further compounding the overall effect of the disease.

What needs to be done at legislative level?

Together with co-presenter Heather Guidone, Director of Education for the Endometriosis Foundation of America, Hummelshoj called for action in three areas:

1. EDUCATION

Young women, and primary care providers, need to be educated about what is and isn’t normal when it comes to menstrual pain

If pain prevents a girl from going to school or a woman from being productive at work it is not normal and she needs treatment.

→ LEGISLATORS can work towards state/regional/national education campaigns

2. SPECIALIST CARE WITH APPROPRIATE REIMBURSEMENT

Treatment for endometriosis needs to be specialised and access to this treatment made available to everyone who needs it.

Insurance companies and payers have to acknowledge that surgery for endometriosis requires highly trained and specialised surgeons and that such specialised surgery must be reimbursed appropriately. If this does not occur then this treatment modality will gradually disappear all together, which will further compromise millions of women’s lives.

→ A DIALOGUE must be entered into with insurance companies and payers to change status quo.

3. RESEARCH INTO DISEASE MECHANISMS

Endometriosis, affecting one-in-ten women during their most productive years, should become a research priority in line with other life-altering, yet non-fatal, diseases.

Until we understand the pathogenesis and underlying mechanisms of this disease (that affects so many women in so many different ways) it will be impossible to develop more effective and safe treatments.

→ FUNDING ALLOCATED TO RESEARCH on pain mechanisms and infertility in women with endometriosis is urgently needed to prevent this devastating and debilitating disease in the next generation of women.

What can YOU do?

WRITE to your state legislators and provide them with facts about endometriosis and the policy needs listed above. Urge them to act now so that we can work towards preventing endometriosis in the next generation of women.