Given these realities, many are left questioning why fibroid research has lagged in the past and what’s being done now to overcome this all-too-common health disparity.
“One of the issues with fibroid research is that, because it’s built as a disease process that mostly affects black women, in the sphere of research there just aren’t that many people who will consider it an immediate problem they face every day like heart attack or stroke,” explained Dr. Janice M. Newsome, MD, Interventional Radiologist, Assistant Professor of Radiology at Emory University, and Director of Interventional Services at Emory University Hospital Midtown in Atlanta, Ga.
And studies show, when it comes to racial diversity, fibroid research has taken a backseat. To examine racial diversity in fibroid clinical studies, Taran and a team of researchers at the Mayo Clinic in Rochester, Minn., reviewed available literaturebetween 2000 and 2006. The results may surprise you.
Their analysis showed that more than 75 percent of fibroid studies didn’t even report race. Most of the studies that did look at race were based exclusively on African American women—but mainly consisted of prospective studies focusing on risk factors taken from a single larger follow-up study (i.e., the Black Women’s Health Study). Of the remaining studies that addressed race, African American women represented only 15 percent of the populations examined.
Although prospective studies can be useful in following disease development and targeting things that might increase risk—the data has limitations.
“The truth is, we don’t know enough about why fibroids affect African American women,” Dr. Newsome clarified. “For example, is it scientifically sound to link the use of hair relaxers and fibroids in African American women or is it simply a correlation because African American women tend to use hair relaxers? Yes, the science shows that these women are affected disproportionately than all other women. But just because a black woman carries a certain amount of melanin in her skin doesn’t answer why it’s happening.”
Understanding the cause and finding a cure for fibroids requires public awareness, which is growing—but has been stifled in the past. A study published in the Journal of Women’s Health showed that despite severe fibroid symptoms, African American women reported taking an average of almost four years to seek treatment. According to Dr. Newsome, this hesitation could be mistaken for passivity and minimize public awareness of an important issue.
“Among African American women, having fibroids is almost considered the norm,” Dr. Newsome told Ask4UFE. “We develop fibroids at an earlier age and have more severe symptoms so it’s difficult to know what’s unacceptable when you’re a black girl who has a 10-day long period just like your mom, aunt, and cousins—then what’s really abnormal?”
Unintentionally normalizing fibroids also runs the risk of accepting unnecessary treatments. Hysterectomy rates among African American women are more than double in comparison to any other ethnic group, with the majority performed to treat noncancerous conditions like fibroids.
High hysterectomy rates among black women are multifaceted. These rates could be attributed to the fact that fibroid tumors tend to be larger and numerous among African American women, therefore requiring surgical treatment. But it also may be the only option black women are given.
“It’s 2016 and as a black doctor myself who treats fibroids, I see a lot of women who come in and say their doctor told them they needed a hysterectomy and that it was their only choice,” Dr. Newsome said. “We, as the medical community, need to change this—especially since black women are more likely to experience complications after surgery.”
With this in mind, Dr. Newsome and a team of healthcare providers at Emory University Hospital Midtown are forming a fibroids clinic that partners interventional radiologists with gynecologists so that women with abnormal symptoms can receive specialized care. “Our goal is that patients from all walks of life and from any doctor can make an appointment and have their fibroids managed in a way that is tailored to meet their needs,” Dr. Newsome described.
Progress also involves women speaking out, educating themselves about fibroids, and not accepting surgery as the only option. Thanks to grassroots advocacy groups like The White Dress Project that have worked tirelessly with legislators around the nation, July has recently been deemed Fibroids Awareness Month in Georgia, Florida, Virginia, Maryland, New York, and the city of New Orleans.
As word gets out, more doors are opening for new avenues of fibroid research at the cellular level. “This is an important area of research that’s developing,” Dr. Newsome encouraged. “When we look at the cells in a uterine wall that has fibroids versus one that doesn’t, we see that there’s an abundance of extracellular matrix (the structural substance that surrounds cells). We’re now finding that fibroids grow mainly because of excess production of disorganized extracellular matrix.”
By studying the intricate makeup of fibroid cells, Dr. Newsome has high hopes that this area of research will help find the underlying cause of fibroids and lead to effective, comprehensive treatment options especially among African American women.
“Fibroids are such a common problem,” Dr. Newsome reasoned. “If we start to put our collective heads together, this is one problem we can treat more scientifically than we have in the past.”