By: Jean Johnson for Fibroids1Where are the research dollars for uterine fibroids? Across the board, this has been the question women have been asking over the past several years. Answers stir up a swirl of issues related to gender, class, race and changing roles of women in society.
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Could you be at risk for fibroids? Risk factors include:
Being African American – Women who are African American have three to five times the risk of having fibroids.
Being overweight – Women who are overweight or obese have a higher risk for fibroids than women with a healthy weight.
Being childless – Women who have given birth have a slightly lower risk for fibroids.
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The most innocuous point out that in years back women tended to have their children earlier in life, and thus having a hysterectomy to treat symptoms related to fibroids was not as problematic as it is for women these days that might wait until their thirties and forties to have children. “Au contraire,” said Janice Burke, a mail carrier in Flagstaff, Arizona who had a hysterectomy to relieve fibroid symptoms when she was in her forties. “It’s true that I’d had my boys when I was younger, but still, having a hysterectomy in your middle years is a very big deal. Frankly, I’d bet the farm that if we’d had more women physicians back in then like we do now, there might have been more interest in exploring less life-altering ways of treating fibroids.”
Other arguments run along lines similar to those that advocated for more breast cancer research a decade ago. People in this camp tend to keep a close eye on dollars ear-marked for medical problems more germane to the male gender like heart disease and try to ensure equity among the genders.
According to a statement by the Society of Interventional Radiology, “Twenty to 40 percent of women age thirty-five and older have uterine fibroids of a significant size. African American women are at a higher risk for fibroids: as many as 50 percent have fibroids of a significant size. Uterine fibroids are the most frequent indication for hysterectomy in pre-menopausal women and, therefore, are a major public health issue. Of the 600,000 hysterectomies performed annually in the United States, one-third of these are due to fibroids.”
Interventional radiologists treat fibroids, but not with surgery. Rather these experts on the circulation system insert thin catheters the size of a strand of spaghetti into the femoral artery through a ¼ inch nick in the skin and using real time imaging, deliver embolizing particles to fibroids that cut off blood supplies. In the aftermath tumors shrink and symptoms abate.
Research related to uterine fibroids is still in early stages. Scientists do not know what causes the disease and little understanding exists of why there is a higher incidence in African American women. In 2002, though, a $1 million grant from the National Institutes of Health (NIH) Center for Research on Minority Health Disparities funded the three-year Fibroid Growth Study.
Principal investigator, Barbara Davis, M.D., enrolled 122 participants for the ongoing work at University of North Carolina clinic. She noted that “we’re really just trying to get the fundamentals. That’s how far behind we were in understanding this disease.” Commenting on using hysterectomies to treat symptoms from fibroids, Davis added, “What was always thought of as a benign disease – ‘let’s cure it with a hysterectomy’ – is getting more attention. It’s not really a benign disease; it’s not benign to the woman.”
The question of getting more funds for fibroids research hasn’t missed the attention of women in Congress. In 2001 Ohio Representative Stephanie Tubbs Jones introduced legislation to authorize $10 million through the NIH for research into uterine fibroids, and a year later in 2002 Senator Jean Carnahan of Missouri introduced a similar bill in the Senate.
Although these first bills stalled, as did a subsequent one by Senator Barbara Mikulski of Maryland in 2003, efforts to increase levels of funding for fibroid research have persisted. June 2005, Mikulski – with backing from Hilary Clinton, Edward Kennedy, Patty Murray, Barbara Boxer, Maria Cantwell and Paul Sarbanes – introduced a bill (S. 1289) once again under the hopeful title of the “Uterine Fibroid Research and Education Act of 2005.”
Pointing to problems in the area of education as well as research, backers of the fibroids legislation note that “according to a 1999 survey conducted for the Society for Women’s Health Research, as many as 1/3 of the women who have hysterectomies do so without discussing potential alternatives with their doctors.” Thus the bill is geared in part to helping make sure women get the information – including the range of available options for treating fibroids – they need from their physicians.
If the Society for Women’s Health Research’s Web site is any indication, funds for fibroid research will be difficult to access in the current political climate. The NIH’s total budget for women’s health issues in fiscal year 2005 is approximately $27.9 billion, “a level that represents the smallest percentage increase in more than 19 years, and less than what NIH estimated would be needed just to keep up with inflation in biomedical research costs.”
Also, the situation in fiscal year 2006 appears even worse as a cut of $103,000 is currently on the table for discussion. Thus, as the first decade of the new millennium crosses the cusp, advocates will most likely continue to ask where the research dollars for uterine fibroids are.
