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Helping Hands

Groups That Navigate the Infertility Roller Coaster

By Kelly Burgess

Nancy Hemenway founded INCIID, which stands for InterNational Council on Infertility Information Dissemination, because of her experiences with infertility treatments. "Often the media paints infertility as rich couples having designer babies," says Hemenway. "The fact is that people mortgage their houses, sell their cars and go deeply into debt to have children."

In Hemenway's case, she and her husband, both teachers, were able to successfully lobby their school district to change health care packages so it would cover some of the costs of infertility treatment. Through INCIID, she's made insurance coverage advocacy a focus. In fact, the group has just started a scholarship program called From INCIID the Heart to assist infertile couples with the cost of infertility treatments. They currently offer 130 IVF cycles per year. Hemenway hopes that the program will eventually provide financial help to 365 couples a year – one a day.

Another advocacy focus for INCIID is accountability from infertility care providers. At this time, success rates are self-reported and often don't accurately reflect the inclusion or exclusion of the most challenging IVF patients. This includes women older than 40, those with diminished ovarian function at any age and those with multiple prior IVF failures. The result for the infertile couple is that they may end up at an infertility clinic that is not the best choice for their particular problem.

"These clinics that are reporting success rates are not audited in any way, and there's a strong feeling that the success rates they're reporting are greatly exaggerated," says Hemenway. "Even the CDC (Centers for Disease Control) has distanced itself this year from reporting these statistics. There's a lot of money to be made in the field of infertility, and a consumer should be given actual success rates so they can make an informed decision."

Want to see more?

• Supporting Your Spouse: A Male Perspective on IVF
• The Infertility Marketplace: How Success Rates Are Advertised
• Sharing the Struggle: Should You or Shouldn't You?
• Talk about it!