Carla Dionne

(WOMENSENEWS)–When Roslyn Holcomb miscarried this summer, she joined the millions of women who suffer the effects of uterine fibroids, a widespread yet poorly understood disease affecting an estimated 70 percent of American women and one that has made hysterectomy the most common woman’s surgery in the country aside from Cesarean section.

Holcomb’s sadness over the miscarriage was compounded by anger. “As a black woman, I don’t know a black woman in my 35 to 45 age group who doesn’t have fibroids,” says Holcomb, 38, of Huntsville, Ala. “I call it the black women’s epidemic.”

Uterine fibroids, also called Leiomyoma, Fibromyoma or Myoma, are benign tumors of muscle and connective tissue developing in or attached to the uterine wall. Each year 1.6 million U.S. women are diagnosed with the disease–a disproportionate number of them African American. While many women suffer no symptoms, fibroids can cause heavy, painful bleeding, pelvic pressure, miscarriage and infertility.

According to a July press release by the National Institutes of Health, close to one-fourth of African American women have hysterectomies as a result of uterine fibroids and a quarter of U.S. women in their 30s and 40s see doctors for fibroid pain, bleeding and infertility.

But research into this painful condition is limited, says Carla Dionne, executive director of the National Uterine Fibroids Foundation. The National Institutes of Health, the federal agency scientists depend on for money to support basic research, spent just $500,000 on fibroids research in 2001 out of its total research budget that year of $19.9 billion, said Ellyn Pollack, a spokeswoman for the agency’s Office of Research on Women’s Health.

Missouri Sen. Jean Carnahan introduced a bill in April that would fund additional research on uterine fibroids, but it is stalled in a backlogged Congress. “I think we’re at a standstill,” Dionne says. She adds movement on the bill is unlikely until after the November elections.

War on Terror Sidelines Research Bill, Proponents Say

Currently before Congress, the Uterine Fibroids Research and Education Act would allocate $10 million for research, public information and education over four years. The bill has been in the Senate Subcommittee on Health, Education, Labor and Pensions, chaired by Massachusetts Sen. Ted Kennedy, since April; an identical bill in the House, introduced last year by Ohio Rep. Stephanie Tubbs Jones, likewise remains stalled. Both bills need additional support to become law.

But Congress is not expected to take up the bill when it returns for a lame-duck session after Election Day because the legislation does not have enough support to bring it out of committees and up for a vote. Instead, advocates hope it will move toward passage when the 108th Congress begins in January.

Dionne says the bill is important because it mandates a dollar amount for fibroids research, in contrast to past congressional resolutions urging the National Institutes of Health to study fibroids that didn’t tell the agency how much to spend. The NIH funds its own research, generally into disease basics, but it also provides federal funds for “partnered” studies, in which drug companies customarily propose a study using one of their drugs and offer to pay half of the study’s cost, with NIH funding the remainder. Dionne says these partnered NIH-drug company studies have consequently resulted in little basic research into what causes fibroids and what makes them grow.

GnRH agonists including Lupron, Synarel and Zoldex that block estrogen production are being tested on fibroids, but their side effects include menopause-like symptoms and the fibroids may grow back when the drug is no longer taken.

“One time I counted over 200 [partnered] studies on GnRH agonists alone and that’s never been approved by [the Food and Drug Administration] for fibroids because of the irreversible bone density loss,” Dionne says.

Mifepristone May Help Fibroid Patients

Meanwhile, the hysterectomy rate in the United States did not significantly change from 1990 to 1997, and continues to be the country’s most common surgery among women aside from pregnancy-related procedures, according to a study published in February in Obstetrics and Gynecology, the journal of The American College of Obstetricians and Gynecologists. During those years, uterine fibroids were most often given as the reason for hysterectomy, the researchers noted, adding that fibroid treatment is difficult “because of the lack of clinical trials and reports on long-term outcomes.”

Treatment alternatives to hysterectomy include myomectomy, in which fibroids are removed or destroyed, and artery embolization, in which fibroid growth is halted by stopping its blood supply. Such procedures relieve symptoms but sometimes have to be repeated. Long-term effects of these procedures have not been studied.

The drug mifepristone also may help fibroids, says Dr. Beth Jordan, a former Mayo Clinic physician who is now medical director for Feminist Majority Foundation. The foundation administers the country’s only compassionate-use program for mifepristone, a drug used for medical abortions that shows promise in treating fibroids, acute psychosis and some types of cancer, she says.

“Mifepristone has really suffered from anti-abortion politics,” says Jordan. “People need to understand that one drug can treat many conditions.”

Jordan says a new study scheduled for journal publication early next year will show that mifepristone decreases fibroids by 50 percent over a three- to six-month period with an effectiveness equal to Lupron but with fewer of that drug’s side effects and no loss of bone density. “And it’s one-seventh the price of Lupron,” Jordan adds.

Dionne says several drug manufacturers are testing their own versions of mifepristone, altering its molecular structure slightly and renaming the new drug to avoid mifepristone’s association with medical abortion.

Basic Research Study Is Still in Early Stages

Research reported in July in the journal Fertility and Sterility identified 145 genes involved in fibroid growth, and researchers believe the hormones estrogen and progesterone are also involved. But no one knows what causes the disease and no explanation exists for its higher incidence among African Americans.

Still, one important three-year study of women with symptomatic uterine fibroids is completing its first year. Designed to uncover basic facts, the Fibroid Growth Study is funded for three years by a $1 million grant from NIH’s National Center for Research on Minority Health and Health Disparities, with another $1 million in matching funds from the National Institute of Environmental Health Sciences.

“We’re really just trying to get the fundamentals,” says Dr. Barbara Davis, the study’s principal investigator. “That’s how far behind we were in understanding this disease.”

“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,” she adds.

Davis is encouraging women with symptomatic fibroids to volunteer for the study at University of North Carolina clinics. She hopes to include 300 women between the ages of 18 and 45. Each answers monthly questionnaires and receives four enhanced magnetic resonance imaging scans revealing detailed images of fibroid growth over one year. Participants who have fibroid surgery during the study year are asked to donate tissue samples.

Suzanne Batchelor has written for the national science series “Earth and Sky” and on health and medicine for Medscape Health, Web MD and the Texas Medical Association’s “Healthline Texas.”

For more information:

National Uterine Fibroids Foundation:

National Institutes of Health–Uterine Fibroids:

National Institute of Environmental Health Sciences and
National Center for Research on Minority Health and Health Disparities
–Fibroid Growth Study: