Battling uterine fibroids is one of the most significant health problems for black women of child-bearing age. This article is the first installment in a Fierce three-part series on understanding how your body creates fibroids, how to treat them, how to keep them from destroying your health and how you can raise your voice. The series launches Living Well: Fierce Reports on Black Women’s Health.
By Sheree Crute
“Having a hysterectomy is your only choice.”
PaSean Wilson Ashley was floored by her doctor’s drastic diagnosis. The non-smoking, non-drinking vegan who loved to exercise couldn’t understand how uterine fibroids had taken over her life. But they had. Normal hemoglobin is 12.1 to 15.1. Ashley was bleeding so much that hers was 7.
Imagine if there were an epidemic affecting more than 60 million American women, yet the disease received only a $10 million slice of the nation’s $28.5 billion medical research budget. The scenario sounds like a nightmare, but it’s the real story of uterine fibroid research. The paltry amount is actually $1 million less than the amount invested in research for Charcot-Marie-Tooth disease, a neurological disorder that affects about 150,000 people.
Yet, more than 80 percent of black women and 70 percent of white women have fibroids. Like Ashley, about half have symptoms so severe that they contribute to nearly 300,000 hysterectomies a year, severe anemia, pregnancy and fertility complications, pain, fatigue, and lost days at work and with loved ones.
The symptoms are more serious in black women, regardless of their level of education, income or health insurance status.
“The amount of money spent on research is extremely low compared to the number of women living with fibroids,” says Elizabeth Stewart, M.D., a scientist at the Mayo Clinic in Minnesota.
The small amount of investment is pocket change compared to what fibroids cost society each year. In 2012, Northwestern University reported that “the estimated annual direct costs of uterine fibroids (surgery, hospital admissions, outpatient visits and medications) were $4.1 to 9.4 billion.”
Hippocrates came up with the name “uterine stones” for the benign tumors as long ago as 460 B.C. The term “fibroid” was coined in 1860. Yet in 2014, women are still fighting to avoid unnecessary hysterectomies and suffering in the prime of their lives.
Ashley has become one of a growing number of health advocates, scientists and physicians who want to put an end to the suffering. They are working to raise awareness about the need for improved, less-invasive treatments and a cure.