FOR IMMEDIATE RELEASE
November 14, 2018
Washington, DC — CARE (Community, Action, Research, and Education) About Fibroids, a nonprofit women’s health organization dedicated to raising policymaker awareness of the impact of uterine fibroids among women in the U.S., today announced the publication of the group’s first white paper entitled, “Uterine Fibroids: A report on the condition and its impact on women in the U.S.” The white paper builds on the organization’s mission by focusing on uterine fibroids as an under-recognized condition in the U.S. and explores the many challenges women with fibroids face and the toll on patients, their families and loved ones, and the impact on our health care system.
“One year after launching CARE About Fibroids, we are proud to publish our first patient focused white paper that aims to bring greater awareness and urgency around uterine fibroids,” said Jenny Rosenberg, the Executive Director of CARE About Fibroids. “We have put together a comprehensive report on the patient journey and the obstacles women face from managing the first symptoms to the economic and emotional toll on their lives including the impact to their families and loved ones. We believe this is a major step for us as we work to fulfill our mission of raising awareness of and better educating women, patients, caregivers, policymakers, and providers about uterine fibroids. We are looking forward to using this paper as an opportunity to take more actions that will help women with fibroids.”
About Uterine Fibroids
The U.S. Department of Health and Human Services’ Office of Women’s Health (OWH) estimates that between 70 percent and 80 percent of women will have uterine fibroids by the age of 50. Yet, due to lack of awareness or the belief that fibroids are a problem to be endured, many women go undiagnosed and untreated.
Among women in the U.S., uterine fibroids are significantly under-diagnosed and under-treated, despite being declared a public health burden by the National Institute of Health (NIH). Collectively, the price tag of symptomatic uterine fibroids, including lost work and disability, approaches $34 billion a year — on par with the combined annual costs of breast, colon, and ovarian cancer.
According to recent studies, women with “symptomatic” fibroids wait, on average, more than three years before seeing a doctor and almost a third (32 percent) wait up to five years. This lag can result in anemia, urinary tract infections, urinary obstruction, and kidney damage as well as cause women to experience body-issue anxieties, lower self-esteem, and worries about relationships and sexuality.
The problem is especially acute for black women where research demonstrates that fibroids are a pervasive health disparity. Compared to other American women, African-American women are three times more likely to develop fibroids, experience them at an earlier age, have multiples as opposed to a single growth, experience twice the pelvic pain and swelling, and have three times the rate of anemia. As a result, black women also have almost four times higher rates of hospitalizations and are close to three times more likely to undergo a hysterectomy to remove their fibroids. Similarly, myomectomy — the other form of fibroid surgery that leaves the uterus in place — is about seven times more common among African-American women.
In terms of the economic impact, it is estimated that more than $9 billion is spent annually for surgery, hospital admissions, outpatient visits, medications, and other direct medical costs for fibroid treatment. Symptomatic fibroids cost the economy above $17 billion annually in absenteeism, lost work, and short-term disability. An additional $8 billion is spent annually on uterine fibroid related pregnancy complications.
CARE About Fibroids
CARE About Fibroids is taking the lead in mobilizing women’s health advocacy and policy-focused organizations to build greater awareness of uterine fibroids, as well as a sense of urgency around the need for improved diagnosis, expanded and better treatment options, and enhanced patient access to appropriate care.
CARE About Fibroids is headquartered in Washington, DC, under the direction of its Executive Director Jenny Rosenberg and a Steering Committee of leading independent nonprofits focused on women’s health. Currently, the Steering Committee is comprised of: the Black Women’s Health Imperative, COSHAR Healthy Communities Foundation, HealthyWomen, and To Know Is To Know. Additionally, general members of CARE About Fibroids include the American Sexual Health Association, the National Partnership for Women & Families, and the White Dress Project